# Parents of Pre-Teens and Teens with IBD



## CrohnsIsGoingDOWN

My name is Lori Smith and I'm the parent of Antonio, my 15 yr old "Crohnie". Antonio was diagnosed in Sept 2010 with Crohn's Disease & our lives haven't been the same. 

I'm creating this support group for other parents of pre-teen/teenage "Crohnies". I had no idea what Crohn's was and I work in healthcare. 

The main thing we want you to know is that YOU ARE NOT ALONE!!!! We are here to provide a listening ear and great information regarding research, financial, medicines, etc. to help you make the best informed decision for your child.


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## Jmrogers4

I actually really like the idea of a support thread for Parents of Pre-Teens and Teens with IBD.  There are actually a number of situations unique to that age group and going through puberty and having to deal with IBD along with all that.


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## Gmama

This is great! I do think there is quite a few of us with kids this age!


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## SupportiveMom

Oh I definitely fit the bill!


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## Jmrogers4

Eye rolls :yrolleyes:, grunts and all which adds up to most communication and the I'm fine!


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## Mehita

His voice is cracking! Hello, puberty!


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## Emily's mom

Hey Lori!

You found the forum! Yay! This is a great tool! 

Welcome!

~Julia


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## Lori1973

Thank you Julia...our son is 14 years old with delayed puberty, so we are definately looking for any ideas to continue progress.  Last week we had scans, swabs and labs done to determine why our son was so tired for about two months...Is it Crohn's related or puberty? Still waiting on results.  Will share any info that I receive from our experiences as well as looking forward to any of the info on here to help us!!!


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## Ands

DS hits 13 in August, so I think we fit the bill of this group!  Just about to start on the low FADMAP diet, we know it won't be easy but happy to give anything ago!


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## Jane and Nick

Nick will be 13 in August too ! Sounds like a great idea.


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## Kyle's mom

K will be 17 in November.  Diagnosed with Crohns in Jan 2010.  Resection in July 2011.  Hospitalized 2X in last 8 months for obstructions.  Colonoscopy and MRE next week.  Currently on Remicade and Methotrexate but GI says he sees Humira in near future.


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## Clash

Kyle's mom my son, C, is 17 now. He has been on remi since dx 2 years ago and mtx was added shortly after. He has disease progression now so we are going to be looking at changes in treatment as well.

How did Kyle do with surgery and where was his resection located, if I may ask?

I hope a change in treatment brings Kyle into remission and then long may it last!


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## Kyle's mom

Clash

K did well with surgery.  They removed about 12 inches near the terminal ileum.  We are hoping tests do not show scar tissue as the culprit for the obstructions.  This disease has affected him so much.  He was diagnosed with school phoeba after surgery.  He now attends the ged program with only a few students.  He does not like to see anyone that may know what is going in with him.


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## Clash

C's CD location is in the TI as well, it mainly involved the IC valve but now there is further progression in the in TI area.

I'm so sorry to hear that Kyle has school phobia. C goes to a flex school so he is either in class or doing independent study at home. For the most part he has done independent study this year. Especially after the ng tube, he can take it in and out daily but sometimes just leaves it in for convenience. On the days he will go any where in town with the tube in but won't go by the school. 

I hope the program Kyle is in really works for him and helps with less stress!


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## Kyle's mom

Clash does he have the ng tube for feeding?  Kyle gas an aweful time with with the ng in the hospital for obstructions.


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## Clash

Yes, he has an ng tube for feeding, it is really small, he places it in the evening most night and removes the next morning. He has not been gaining weight so we decided on the EN feeds to make sure he was getting proper nutrition. I think he has issues with absorption since it is his TI affected.


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## Kyle's mom

Good luck clash.  We may need to go that route in the future.


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## Daltonsmom

My son is 13 ( diagnosed in 2009 at age 8) with CD and UC.   He is growing, finally gaining a few pounds, and his voice is cracking       He is currently on Remicade, but developing antibodies, so we will see where we go from here.  Great forum....I cannot wait to learn from other parents.


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## greypup

I'm in.  My daughter is 17 now, diagnosed one year ago.


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## Precious ones

Hi - I am a mum of a newly diagnosed son aged 10 of severe crohns found throughout the colon, ileum and in the stomach. He has been on the modulen drinks for 2 weeks and just started azathioprine.  His hair is already starting to fall out. I am so scared of the disease and the powerful drugs on such young children but feel like we have no choice.  

I have a second son aged 12 who is in the process of starting tests as he has shown growth delay in the last 2 years, night sweats and eye inflammation.  Docs dont seem too worried at the moment.  This whole journey scares our family.  I have been following some of the posts as I am not sure how much emotional support there will be from the medical side of things.


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## Maya142

I'm in too - M is 17 now and was diagnosed about a year ago.


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## Jmrogers4

Welcome Daltonsmom and Precious Ones, glad to have you on board but sorry you had to find us
:welcome:


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## Daltonsmom

Thanks---it has been a tough year.  Despite his remicade, he continues to have symptoms and may possibly need to move to Humira soon.  I am not looking forward to the switch, hoping we can hold on to remicade a little longer.  He has started to develop antibodies, and the GI said it is unclear how much longer remicade will work for him.   

I hate to see him in pain.  If I could trade places with him and take this all away, I would do it in a heartbeat.

Thanks for welcoming us to the forum, I am sorry we have to be here....but it is awesome that we are not alone


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## Jmrogers4

my little penguin's son although younger had to make that switch a while ago and her son is doing quite well on humira I believe there are a number of kiddos on humira who it is working very well.  I hope it provides many years of symptom free relief for him.
I can certainly understand though when something has been working and finally brought some relief it is hard to let it go and once more venture into the unknown.


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## Daltonsmom

He is really afraid of the shot....he has heard that it burns, and that you need to inject into an area that is a bit more fatty.  How in the world do these young folks find a place to inject themselves, when they are so slim ?


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## Jmrogers4

I believe they ice the shot spot, leave the shot out to warm up a little and some use a numbing cream.  Maya's daughter is also on Humira.  I'm sure more will chime in shortly with some of the tips/tricks.


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## Jmrogers4

http://www.crohnsforum.com/showthread.php?t=44910
This is the link to the kids Humira lots of tips and information there.  Hope it helps


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## Maya142

Hi Daltonsmom,
Both my daughters have been on Humira. The shot does burn a lot but they got used to it. We ice for 15 minutes and then inject into their thighs (they're both pretty skinny, so they don't have fat on their stomachs). We do it while watching TV so that they're distracted and after we have ice cream. 
The shot is painful but we found that the relief they get for 7 days (they both do weekly shots though some kids do every other week) makes it worth it. Initially I did their injections but now they both do them by themselves. I've heard people say that the syringe is less painful (compared to the autoinject pen) because you can control how fast you inject it. We never tried the syringe though because neither of them wanted to see the needle. Also, we ice after the shot too.
Mylittlepenguin has found a way to make the shot less painful - I think she injects lidocaine into the shot itself. I'm sure she'll be along shortly to explain how she does it.


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## SupportiveMom

My daughter is on Humira. Not making a difference for symptoms, but according to MRE she is healing considerably so either that &/or the Methotrexate. Maya said it pretty well. We also ice, and we so it right before bed. It works for her best that way. Good luck!


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## mugsymagoos

Hello everyone,

My daughter is Kayla and she just turned 19 last month.  She was diagnosed with UC 7 years ago and now is diagnosed with Crohn's.  She is currently on Stelara every 8 weeks, and also has a temp ileostomy due to a stupid doctor perforating her colon during a scope.  Am hoping that she can have the surgery to reverse that this summer.  She is a Freshman at the University of Florida.  We live in the Tampa area.  She has been on every medication out there over the last 7 years, and so far Stelara has been the best.   Next scope is in a month and praying for more improvement!!

Therese


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## my little penguin

DS has been on humira for almost a year now give or take a few days.
He reacted to remicade twice even though it was working well for him.
Humira took longer to start working since a) we didn't do a loading dose and b) we started at the lower pediatric dose ( 20mg ).
I inject DS with a syringe every other week.
His Rheumo prescribed lidocaine to add to the humira syringe to reduce the burning of the shot.
The lidocaine increases the pH I think.
We take the shot out of the frig
Draw up a fresh syringe of lidocaine
Add the lidocaine per his doc to the pre filled humira syringe
Then inject.
He gets to pick a movie to start watching during the shot.
He also has squeezy stress balls he holds in. Each hand.
Or a laughing happy pill to squeeze during the shot.

Seen here 
http://m.youtube.com/watch?v=5L0wt2HoZgQ


 He gets doughnuts or ice cream after the shot.

As far as fatty area -DS has been supplementing his diet for over three years now with en ( peptamen jr ). He drinks 2-3 a day so an extra 500-750 calories a day.
This helped him gain over 30 lbs since dx. And start growing again.
I don't plan to let him stop till he is 18 at least.
He is 10 now .

Good luck with the humira .


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## kimmidwife

What a great idea to start this! Caitlyn is 16 and Mugsymagoo we are also in Florida. Super sorry to hear about your daughter experiencing a perforated intestine I know they list that as a possible complication though rare thank goodness. Hopefully she will have the reversal and all will go smoothly. Is she in college?


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## mugsymagoos

Where in FL are u guys?  Yes I pray she can have the surgery this summer!  She is currently a freshman at the University of Florida!


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## kimmidwife

We are in South Florida.


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## Mehita

For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?


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## Willowcat05

Were in, my son is 14 diagnoised feb 2012 currently in remission due to surgery and methotrexate


Past meds
Azathioprine
Ferrous sulphate

Right hemicolectomy
Methotrexate 0.3ml
Folic acid


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## Chester31

We're in too! Son diagnosed June 2013, is now aged 15. Back on EEN while waiting to see if he generates antibodies to chicken pox vaccine before going on to AZA.


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## Willowcat05

Mehita,
I find it really hard to tell the difference, with the easter hoildays just now my son is sleeping to 2pm in the afternoon .he is not having any crohns symptoms so hope its just him being a teenager.We are also waiting on tests coming back to confim that he has Gilberts syndrome which can also make you tired.


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## greypup

Mehita, the teenage fatigue that M has is easier to overcome and doesn't have other IBD symptoms that show up with it.  Does that make sense?


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## SupportiveMom

I am glad my other teenager in the house went through sleeping a lot and no energy. If she didn't I probably would have been more concerned when D has it. I admit though it is hard to know the difference between teenage tiredness & IBD tiredness. When she is overly tired I start looking for other signs of issues but not to hard until I see something else. Raising a teenager itself is hard!


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## Clash

I think C's fatigue is a combo of things, incl. Chronic disease, lowered iron, possibly active disease and a messed up sleep schedule.

My college age daughter slept a lot as well in high school and was tired but it seemed comparable to the amount of activity she was exerting, not the same with C. She is in college now and will sleep all day on off days but she carries a full academic load, works two part time jobs and carries on a full college social life so it makes sense for her.


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## positivemum

Another teen here DS 15 and controlling his crohns through EN. a good idea to have a teens support


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## Ands

Fatigue is awful with J, not 13 until August.  Bloods currently OK but very erratic BM, mouth ulcers, sore eyes....  Hoping FODMAP will help with some of this, slightly nervous about starting but are going to do 6 weeks.  J sleeps from 8.30pm - 6.30am and is just as tired when he wakes up!!!!!


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## SupportiveMom

Cool the 'mum's both doing EN at the same time. How is your 15 yr old managing it? Tube or orally? Any issues getting him to start it?


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## griffin123

I'm joining this group too! My son is 14, got diagnosed last year right before he turned 13.  He is now on remicade and methotrexate, things have been going well until last week when he got a stomach bug and that caused a flare up. I think this support group is going to be great for us parents with teens!


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## Maya142

I think when my daughter is tired and it has to do with active disease, no amount of sleeping or rest really helps. If it's just regular teenage tiredness then a nap or going to bed earlier helps.


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## Chester31

Hi SupportiveMom
My son takes EN orally - he doesn't really mind it any more. We 'paid' him to do it first time around but he's keen to do it this time to avoid going on to stronger medication. Unfortunately I think we're heading down that path anyway but I'm keen for him to keep going with the EN in addition as I'm sure it helps to maintain his weight.


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## SupportiveMom

Well keep up the EN orally. Good for you. Learning the hard way there is much more to this EEN than I'd like. So wish I could get her to stick to oral EN. We are already on the strong meds so I appreciate waiting for them as long as possible.


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## positivemum

Hi supportivemum

my son was diagnosed 3 years ago and initially did EN for 8 weeks - didn't want a tube so went for it orally - brilliant willpower at the age of 12 and he only likes one flavour! It helped a bit but damage so great we ended up with prednisalone course then 2 years AZA with Pentasa. Did work. But last Aug he felt ' not right' and decided to go back on shakes exclusively for 6 weeks. really did the job this time - is still on 6-8 shakes a day and a meal sometimes 2 a day but very restrictive diet at the moment. However, he is off ALL meds at the moment and school attendance 100% better this year etc. He sometimes says he needs to line his stomach with a shake before food and he seems to have it all worked out at the moment. After his exams etc this year we will try to add more food in. EN does work!


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## SupportiveMom

I wish more doctors pushed it in the beginning. Many step right up to meds. D was so bad I know we had no choice but to do meds. I'm glad to hear he is making it to school more. That is our goal too!


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## kimmidwife

I too wish doctors pushed EN. I only knew about it from the forum and that was after we had tried many meds first.


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## Spershick

I am a new member so not sure if this is the right spot to post this...my son Sean age 15 was diagnosed in jan when a bout of salmonella landed him in hospital. We think he most likely suffered in silence for about a yea before. He had lost tons of weight, never ate much and was always tired. Spent most of his days glued to his computer. Over this past four months has had steriod treatments and now on maintannce meds while weaning off steriod. Has has two flares already. When he's not flaring he's feeling fine but I've noticed tons of brain fog? He was a straight A student before this all happened and now is having a hard time. Has anyone else noticed short term memory loss? Has anyone done something that helps?

Taking
Prednisone..started 50 now down to 20
Imuran
Asacol
Multi vitamin


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## kimmidwife

Welcome Spershick,
I am sorry to hear about your son but glad you found us. There are many things that could cause brain fog. It could be exhaustion from the illness. It could be from the medications. Are you making sure he gets enough sleep? I know this is a battle with my teenager. I have to literally take away the computer and make her go to bed. She needs 8 to 9 hours of sleep to really feel good. How much sleep do you think he is getting? Maybe he needs more.


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## Mehita

Has he had his Imuran levels checked, spershick?


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## Spershick

Yes he has blood work done every 2 weeks..do you think it's the imuran causing the memory loss?


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## Spershick

Yes kimmidwife I think he is sleeping ok, he likes his sleep unlike most teenagers who stay up till all hours of the night...I'm guessing it's most likely just the whole "crohns" stuff that is making him foggy. I'm sure all the pills don't help too


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## DustyKat

@Spershick

Where is your son’s Crohn’s located? 

If it is in the small bowel have they done testing for levels of B12, Iron Stores, Vit D, Magnesium and Zinc? 

Dusty. xxx


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## Spershick

Hi Dusty,  yes most of his inflammation was in colon but some in small bowel was seen with MRI so crohns was his diagnosis. I really don't know all the blood work they do..every 2weeks because of the start of the imuran. I will ask the GI nurse about all of those you mentioned. Thanks so much. I see you have 2 kids with crohns. I have been wondering about my sons older brother..I heard its common in siblings. I also see yours are both on imuran. I have been worried about this medication and all the scary things that could happen..this is all new to our family and so glad to see positive advice from other parents out there.


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## DustyKat

@Spershick,

Your lad has ileocolitis which is the most common type of Crohn’s. :ghug: Generally it affects the last part of the ileum known as the terminal ileum and the first part of the large bowel or the ascending colon. 

Since he does have ileal involvement, and because you feel that he has had symptoms for some time, he is at higher risk of having issues associated with malabsorption. The vitamins and minerals I mentioned above are the ones most likely to be affected if there is a deficiency and may well cause the issue you are speaking of, particularly the B vitamins and iron/folate. It is very common for those with Ileal Crohn’s to be deficient in Vit D and also Magnesium and Zinc. All these play various roles in the normal functioning of the body and some play a critical role in the immune system and healing. Symptoms of deficiency do involve such things as weakness, tiredness, lightheadedness, depression, impaired memory and cognitive function, loss of appetite. I have picked out the particular issue you are dealing with right now so you can see how malabsorption may be playing a role but as you can imagine the symptoms of deficiency of each of these things has quite an extensive list. Unfortunately a multivitamin won’t cut it with these sort of deficiencies. 

I have my own views on what level should be aimed for when supplementing so should it ever come to you needing to do that and want my opinion I am happy to give it. :lol: 

They won’t necessarily be tested for unless you specifically ask or unless the GI is on top of things. 

Having one child diagnosed with IBD means the risk of another developing it is about 30%.  We lucked out on that one and although I am not the only one here with more than one child affected there are loads that don’t.  

Yeah, the drugs suck ay? But then so does under treated Crohn’s. :voodoo: 
Our introduction to Crohn’s wasn’t a pleasant one, as if any are!, my daughter went undiagnosed for 18 months and ended up getting her diagnosis via emergency surgery. We nearly lost her so I must admit I grabbed onto those drugs with glee! :eek2: :lol: 
Seriously though mine have been on Imuran for nearly 8 years and 3.5 years respectively with no issues, touch wood! The main thing is to ensure that you regularly monitor their bloods whilst ever they are taking the drug, that is at least every 3 months. 

Dusty. xxx


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## DustyKat

Mehita said:


> For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?


@Mehita,

With Matt it was how he looked. Pale, drawn and dark circles under his eyes. His lethargy was almost palpable. 

When his long hours of sleeping wasn’t related to Crohn’s he looked rested and had that bounce about him, when he was awake! :lol: 

Does that make sense? 

Dusty. xxx


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## Daltonsmom

Can anyone help me out with lab work results?  D was in the hospital for labs and remicade on Monday 4-14-14.  The GI called yesterday, said most counts look great, but anemia is still present.

What tests do they use to determine anemia?  I have print outs from his last three lab results, and I can see drops in many levels ( WBC, RBC, Hemoglobin, Hematocrit, MCV, MCH etc.)   Which drop in level should I be most worried about, they are all dropping-----not shockingly so, but dropping at each of his last three lab draws---January, March, and April.


Can someone please shed some light on the subject?  He takes Vitamin D supplements and a multivitamin, and now we are discussing adding iron to the mix.

I would love some advice on what to look for, questions to ask 

Thanks!


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## Spershick

Thank you so much dusty I think some times parents know more than the specialist do! I think you are right about all the deficiency stuff. My Sean has always been skinny, pale, tired, cold, no motivation to do anything but sit in front of a screen. I will be calling my GI nurse after the weekend to get everything checked


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## DustyKat

Good luck and let us know how you get!  

If you do get bloods done be sure and get copies of the results. If you feel so inclined you can post them on the forum and we can all put our two bobs worth in. :lol: 

Dusty. xxx


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## Pink

Hi! I am in! My son age 18 was diagnosed recently  and the GI started him with a Top down approach and is currently on remicade . His disease is in the upper part of the small intestine. Glad to have this support group


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## jjohns23

Hello to all, this group is going to be such a benefit to Makayla who will be 13 in July.  We live in the Tampa area also.  Just finished 1st Remicade treatment last Wednesday and praying for good results, but I guess it will take time to see if it works. 

Jo


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## mugsymagoos

Hi Jo!  Where in the Tampa area are you?  Which GI are you taking Makayla to?

Therese


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## lbligh

This group is a great idea. My daughter is 13. 

Our story: We were fortunate to get the definite Crohn's diagnosis only about a month after she got sick last fall -- she was totally healthy before that. Pediatrician kept saying it was probably a virus causing the fever and weight loss, but we insisted on blood work, which showed anemia and a lot of other abnormalities. Pediatrician said "I don't know, maybe you should see a rheumatologist?" My husband's brother is a doc and said he thought a pediatric GI would be a better choice. In our area it is very difficult to get an early appointment with either. I made appointments with both types of doc and asked to be on a waiting list for both, and the pediatric GI had an unexpected cancellation a week later. 

Had the colonoscopy and endoscopy and biopsies and MRE, all said definitely Crohn's. Doctor gave her Pentasa and Prednisone, neither helped much, and the doctor started pushing 6MP.

We did a ton of research. My husband is a health care researcher by profession, and I know a lot of people, so between us we came across a lot of alternatives. Early on, someone told me about the Specific Carbohydrate Diet, and we got the book, but it sounded so goofy, we didn't take it seriously.

We tried a lot of dietary supplements such as turmeric, tart cherry juice, probiotics, cat's claw, wormwood, and some others. Also supplemented with B vitamins, zinc, Vitamin D3, and lactoferrin, because of her anemia and malabsorption.

None of these things seemed to help. The only thing that did was EEN which came about because she wasn't eating and we essentially bullied her into drinking Ensure shakes all day for a few days, which was followed by the all-liquid cleanout for the colonoscopy. Amazingly she felt great for about a week after that! When we told our doctor about that, she said "Oh yes, EEN can work well, but it's too difficult to stay on it." We were furious that she had known about it all along and had never bothered to mention it as a possibility! On the other hand, she was right in a way - when we brought it up as something we should try again, our daughter flatly refused.

So we're four months into this nightmare, and we went so far as to fill the 6MP prescription, but couldn't quite bring ourselves to start administering a chemotherapy drug to our daughter without trying one last thing. With no great expectation, but considerable desperation, we started the whole family on the Specific Carbohydrate Diet.

Our daughter had had a fever every day for four months, except for the week after the EEN. Sometimes as high as 103. She had stomach aches and fatigue every day. Weight loss. Facial flushing. No appetite even though she was on 40 mg of Prednisone.

Four days after starting the diet -- no fever. No stomach ache. Both completely gone. Tons of energy and appetite. It was like a miracle. After two weeks, all the inflammatory markers in her bloodwork were back to normal. In fact, low normal. After another month, virtually everything in her bloodwork was completely normal.

She's now been on SCD for two months. We tapered her off the Prednisone and other supplements, and now all she's taking is the Pentasa and zinc and Vitamin D3. (Not sure if the Pentasa is doing anything at all, but we will reassess when it comes time to renew the prescription.)

We just came back from a week in England over Spring Break, and she was perfectly fine the whole time. Eating was a bit difficult, but thanks to good restaurant advice from some Paleo blogs, we worked it out OK.

SCD doesn't work this well for everybody, but it does seem to help a lot of people. We have become SCD evangelists, spreading the word that this is something that is worth a try. At the very least, doctors should give the information to their newly-diagnosed patients, even while they are waiting for the first appointment or the endoscopy or for other meds to start working. 

We know there will be some bumps in the road, that's the nature of this disease. Still, for now she's doing well, and we are continuing to educate ourselves.


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## SupportiveMom

Your doc is right, EEN is hard to stay on, and in my experience very hard with a teenager. We tried EEN orally and my D didn't stick with it. When the GI discussed it again this time she knew orally she wouldn't commit to it and actually opted for the NG tube to ensure you sticks to it. We are just about at the end of week 1 and so far so good. It has been a learning process with measuring bile in her stomach and how fast she digests. We have had 2 night passes and she was around food & people and wasn't tempted. She knows the risk in doing so and doesn't want a set back.

I do hope when she is reintroduced to food to try the SCD diet  or low residue as that was one we couldn't really switch to with success mid stream of the disease. I have a while to think about sitting down at the family dinner table again so I have lots of time to read & plan. Be sure to post issues & successes in the diet section so I know what works & doesn't!


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## Chester31

Ibligh - it's fantastic that your daughter is doing so well on the SCD diet. I also bought the book but didn't even mention it to my son as I thought he'd hate it and I couldn't see how to make it work for us as a family. He's had great success on EEN too but symptoms come back when he starts eating again. He's currently on EEN once more although his GI wants him on azathioprine once we've sorted out his immune issues. I am really struggling with the idea of Aza, particularly given his age and the fact that he's male, and would love to find an alternative. Please keep us updated - we just might have to give it a go!


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## jjohns23

Hi Therese, we are in East Tampa and Makayla is seeing Dr. Arasu at St. Joseph's Medical Arts Bldg.

GO GATORS!!

Jo


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## mugsymagoos

We have been to every pediatric GI in the Tampa area since Kayla was diagnosed at age 12.  Didn't like any of them!  We started taking her to the Mayo clinic in Jacksonville 2 years ago, and we love it there!  

Yes, Go Gators!  Kayla finishes up her freshman year next week!!!!!  

Therese


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## lbligh

Changing to SCD was actually easy for us because for weeks we'd been eliminating every food that seemed to disagree with our daughter. Plus we had been doing what the doctor directed and eating "low residue." By the end it seemed as if she could hardly eat anything.

So when we started SCD it was such a luxury. Salads! Shrimp! Meat! Fruit!

We go to a whole lot of effort to make the food delicious. For the cost of one endoscopy, you can buy a whole lot of out-of-season raspberries! There is a new variety of bacon from Gwaltney that has no sugar or starch, and that's perked up our breakfasts a lot.  I make a half batch of SCD-legal macaroons every couple of days.

It has helped a lot that the Paleo diet is so similar to SCD and is currently popular. There are tons of great recipes online. My daughter likes to look for recipes that sound good, and it gives her much more feeling of control over her diet. 

Truth to tell, the rest of us sometimes cheat when she isn't around. But we only eat SCD-legal food otherwise. It's only fair, and it's actually a very healthy diet.


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## Pink

Hi Ibligh,
Such great news re your daughter and her success with the diet. Has the diet actually reduced her inflammation, besides symptom control? Its great that you are all supporting her in the change of diet.
What area is her crohns located ?
I have always been curious about the diet, but in my sons's case he barely had symptoms, so I didn't want to add another stress.  I will do some research. Thanks for sharing!


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## DanceMom

My youngest saw Dr. Arasu for laryngopharyngeal reflux a few years back.  We felt he was adequate but we were very unhappy with the hospital he worked out of.  Ironically I worked for the same hospital a few years prior to taking her there.


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## mugsymagoos

Dancemom,

Where do you guys live?  I am a dance mom too!  LOL!  Two of my girls dance competitively!  We had a very bad experience with Dr. Cuenca who is in the same practice as Arasu.  I hope I never see that woman again!

Therese


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## DanceMom

I bet we've passed each other at competitions!  What studio are you at?

We live in Lakeland but use Nemours in Orlando. She saw Dr. Winesett at St. Joseph's, and though we liked her she just couldn't give us answers.


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## mugsymagoos

My girls dance at Dance Extreme Academy in Trinity!  We are actually going to Headliners Comp this weekend in Orlando!  What studio are you at, and what comps have you been to this season???

We saw a few docs in Winesett's practice also.  Like I said, we have seen every ped GI doc in the Tampa area!  lol


----------



## DanceMom

A dances for Tammy's Dance Company.  This season we've done Showbiz, Hall of Fame, StarSystems, State Dance Championships, and StarPower.  We will also be doing ShowStoppers and Thunderstruck.  It has been a busy season! lol

Glad to meet a fellow Dance Mom on here!!


----------



## lbligh

Pink, my daughter has (or had) patches throughout her upper and lower GI tract, but especially at the terminal ileum. She never had diarrhea or vomiting, though, just fever and weight loss and stomach aches. We were really surprised by the Crohn's diagnosis.

Anyway, all the inflammatory markers are now normal. In fact, they are low normal. 

Now of course we are wondering how long she needs to stay on the diet. We are guessing a couple of years.


----------



## SupportiveMom

Ibligh its hard to know how long to stay on the diet. Personally I would always stick to it to avoid a flare. What has the GI said?


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## nani0126

Hello all...my son is a newbie...diagnosed last tuesday. Glad I found others in my area. I live in riverview..just moved from Tampa. .love reading all post..I am learning a lot... I recently bought everything gluten free dairy free soy Because I heard this diet is good..also looking into paleo diet. Anyone been on this diet? My sons Gi wants to try remicade and 6mp soon. Hes currently on 10 Pentasas,  4 prednisones,  6 zincs, prilosec, vit d, k and pediasure peptide..I feel like he's getting worse..any advice..is this normal? Is there a group that meets in tampa..my son is a very mature 10 almost 11 yr old thats obsessed with mind craft :/ he feels alone. I was looking to take him to camp oasis in georgia. Anyone been there? Also hes seeing a doctor in st pete hospital named kargoo..anyone know of her...or anyone can recommend an swesome Gi around? Sorry so many questions..I have tons more..also heard of something happening at MOSI I believe may 17th or 19th I was thinking of going anyone else going the program about Crohn's but you have to RSVP for and then free entrance to mosey afterwards


----------



## Clash

Welcome nani0126, so sorry to hear about your son's recent dx.

There are some parents here who have tried SCD, paleo, gluten free etc. I haven't had experience with diet helping with my son's CD other than low residue when flaring. I'm going to tag some others whose children are following a diet plan I think Jenn has a son following low FODMAP, jmrogers4 I think has tried gluten free and maybe SCD or paleo, my little penguin has a son that may have tried some of these diets and Dusty has a daughter that has been on raw vegan maybe? A lot of us have done elimination diets to try and figure out what possibly could be triggering issues.


----------



## Jmrogers4

Nani,
I answered you about diets on the other post so wont repeat all that.  I will say that Camp Oasis was a minor miracle for my son.  He was also diagnosed at 10 and went to Camp Oasis (in Washington State) for the first time that summer.  Before camp he was pretty depressed about the disease, didn't want to talk about it, didn't want anybody to know.  He met some incredible kids at camp that are dealing with the same issues and he wasn't different there.  They have maintained that friendship throughout the year and all look forward to meeting at camp again every summer.  He came home from camp and had a completely different attitude.  He may have crohn's but crohn's doesn't have him.  He stood up in front of his entire 6th grade class at the beginning of the year and told them all about  it.  They were all really supportive.  I was one proud mama!
In fact one camp friend who lives in another state has become one of his best friends and are each others go to person for support on the disease, they talk about medicines they are on, how they are feeling and just regular teen stuff.  It is nice to have a peer to talk to that "gets it" kwim?  My son's are minecraft freaks as well and he regularly plays minecraft together with his camp friend on both the xbox and computer.  When he is on the computer he usually has my laptop next to him skyping his friend so they can talk while playing.


----------



## nani0126

Thats hilarious jacqui...my son  is always on minecraft with his friends and labtop at the same time ....thanks for the advice about Campo oasis... I think it truly will benefit him. I am excited for us to go please keep in touch, i very much appreciate yourS and everyones advice especially since we are new at this...


----------



## my little penguin

Pentasa was. Useless for my kid .
We were told it either works or it doesn't but to only give it 30 days .
Diet helps crohn's but since most kids tend to have a more severe course more meds are needed.
DS tried free of this that and the other you name we tried it.
Nothing really helped
He also tried all the different meds.
EEN - peptamen jr helped him grow and gain weight but only remicade /humira got him back to being a kid again.
All the recent studies show remicade plus immunosupprent early on are the best way to reduce the risk of surgery later and stay in remission longer.
My son was 7 at dx and is now 10.

Sorry you joined the club


----------



## Jenn

Welcome. We haven't tried any special diet for my son, now 12, I think maybe you meant the admin Jennifer  . My son is doing well on Humira. The top down approach going for Remicade first usually gets quicker and longer remission. My son is hooked on Minecraft too. He plays it while listening to youtube videos of people playing it also.  He has gone to Camp Oasis in CA once, absolutely loved it, and will go again this summer. Such an amazing place!


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## Jmrogers4

I think it is Twiggy930 whose son is doing FODMAP.  I believe she has a thread about their journey


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## Clash

Ah yes Twiggy930, sorry I remembered the thread but mixed the users names up!


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## lbligh

Nani, the Paleo diet is quite similar to the Specific Carbohydrate Diet which has been such a success for my daughter. The Paleo diet is popular now, and that has been great because people have posted great Paleo recipes online that I can either use or adapt slightly for SCD. 

Because SCD is specificially designed for Crohn's and Ulcerative Colitis, you might want to focus on that diet, but I've heard of people having a great success with Paleo instead.  

Some differences: SCD can have cheese and homemade "SCD yogurt" but Paleo is no dairy

Paleo can have maple syrup as well as honey; SCD is honey only

Paleo can have chocolate and SCD cannot (I still haven't figured out why)

Paleo can have potatoes and sweet potatoes, and SCD cannot.


----------



## Twiggy930

The FODMAP diet has greatly reduced my son's chronic abdominal pain.  When he went on it all his inflammatory markers were normal but he was still having lots of pain.


----------



## nani0126

I definitely have to look into both diets. Thanks. Were can I find posted recipes? and are there any favorites that your kids like?


----------



## lbligh

We have tried a number of recipes from the "Comfy Belly" blog including a recent big success with Chicken Tikka Masala. I do a lot of recipe reading online, both SCD and Paleo sites.


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## DustyKat

Thanks for the tag Clash.  

@nani, I am so very sorry to hear about your lad. :ghug: 

Both of my children are in remission following surgery that was required either at diagnosis or closely after it so their eating habits have been based on this state. Neither had the opportunity to use diet as a treatment when they were flaring. 

With this in mind my son’s diet hasn’t really changed from pre diagnosis to post diagnosis. Having said that he has for such a long time preferred a very bland, somewhat low residue type diet even when in remission. I guess he became very in tune with his body a long time before any disease process showed itself and that style of eating became a comfort to him and it has remained that way. 

My daughter, on the hand, has over time made a drastic change to hers. Her disease went unchecked for 18 months so the damage done was more extensive.  She was 14 when diagnosed and had a difficult few years of adjustment, physically and psychologically,  before she finally found her feet. She has transitioned from a ‘normal’ diet to pescetarian (fish meat only), then vegetarian and finally raw vegan. She states she feels the most healthy and energised on this type of diet but I do note there is some relaxation back to vegetarian as it does help in social situations. This type of diet certainly won’t suit everyone and I honestly don’t know how suitable it is for young, growing children as my daughter was an adult when she commenced eating this way. 

Dusty. xxx


----------



## CDJ

My son is 13, was diagnoised just over 4 years ago with crohns.  He has delayed puberty, which we are hoping will sort itself out in the next year or so.


----------



## Mehita

Do any of your kids have boyfriends or girlfriends? Have they told them about their disease?


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## SupportiveMom

My daughter had a boyfriend briefly and he knew before they dated. Everyone in her school and her extended friends circle know she has crohn's though.Makes it easier. in the fall she starts high school with a whole bunch of kids she doesn't know. I am not sure what she will chose to share yet.


----------



## Jmrogers4

Jack has always been very open about it so not that he has had a serious or really non-serious girlfriend, there have been a few crushes but I think pretty much everyone knows he has crohn's so it has not been an issue but I think if it was someone new he would have no problem telling them.


----------



## Tesscorm

Stephen already had a girlfriend when he was diagnosed and he was completely open with her re his diagnosis as he was with most of his friends.  Not sure how much detail he tells new friends/girls but I do know he's pretty casual about it if it comes up in conversation, ie when friends in residence asked about his Boost shakes, etc.  

He's even used it to his advantage :lol:, he's never liked veggies and, his entire life, has had people say 'but just TRY it', 'Oh come on, it doesn't taste bad', 'just a bite', 'it's good for you', 'you're too old to be picky', etc., but now (he's told me) he just says 'oh I can't, I have crohns' and says no one ever bothers him again! :yfaint:

But, and I think this applies to anyone of any age, telling people you have crohns doesn't mean you have to explain every and all details.  In reality, the details of 'your' experience with crohns may be very different from someone else's anyway...  

With casual friends/acquaintences, I've heard S just say he has crohns which is an auto-immune disease that causes inflammation in his intestines so he just has to watch what he eats.  If there's a reason, he will offer up whatever info is asked, ie another boy in his residence was diagnosed with crohns this past year and another friend's sister was recently diagnosed with UC, in both these cases, S offered up all the info he knew re tests, symptoms, etc.

Stephen was an older 'child' when diagnosed so his explanations have always been his decision but, maybe some of the younger ones just need to realize that keeping the explanation simple doesn't mean they're lying or hiding something, that how much or how little they explain is totally up to them and there is no wrong explanation.


----------



## greypup

M has had a boyfriend since Sept.  She's in her junior year of high school.  He and her close friends know that she has crohn's.  She was pretty open about it all when it happened and they were super supportive.  Her boyfriend is a very compassionate and thoughtful guy, which we are all grateful for.


----------



## Daltonsmom

We live in a very small town, and unfortunately some people can be very cruel when faced with a situation that they are uncomfortable with.    My son does not have a GF, but he has a small circle of friends that know he is ill, and that he has to travel a great distance to a specialist to get treatment.

I know he shares information with his close friends, and coaches....but I don't think he is comfortable sharing information with just the average kid.

I hope when he gets more stable, that he can attemp camp and actually meet other kids who are dealing with the same issues.  It may make him more comfortable.  I know he feels alone some days, and I ( while attemtping to be compassionate) listen to him....but I can't possibly even understand what or how he is feeling.

He is on the quiet/shy side too, so that may be why he is not as open as other young people.


----------



## Catherine

Sarah has boyfriend? close friend.  He knows that she Crohn's Disease.  She know he has celiac disease but if anything his health is worse than hers.


----------



## Maya142

M had a boyfriend last year when she was diagnosed. She told him and her close friends about her diagnosis. She's also pretty reserved and only her closest friends know details about both the Crohn's and the arthritis.


----------



## lbligh

I've been very open with my daughter's friends' parents, teachers, etc. They know there was some kind of illness going on, and if we made a big mystery about they would probably start speculating it was childhood cancer or something along those lines.


----------



## Daltonsmom

I had to be open with teachers, and put a 504 plan in place.  The county where we live has a limited number of bathroom visits allowed per each 6 week block.  There is no way he would ever have been able to remain in school with that restriction.  Therefore, I have to have a conference every 6 weeks with the school teacher, and school division......to tell them that he is still sick, and he still needs unlimited bathroom visits.  Also, I have a plan in place that he is always seated next to the door, and that he gives some sort of signal to the teachers....so he can excuse himself quietly without stopping classroom instruction to ask to use the restroom.......grrr, as if this disease were not challenging enough already ?????


----------



## jjohns23

Wow Daltonsmom, your county needs to come into the 21st century.  I completed the forms for 504 plan in 2010 and no update has been requested or needed.  Crohns does not go away and symptoms can not be predetermined.  Maybe you can speak with guidance counselor, provide detailed info and supporting documentation to him/her and let that person be the go to. 

Jo


----------



## lbligh

Daltonsmom, your county school rule sounds ghastly! I've never heard of restrictions on bathroom visits -- perhaps there has been a problem with students cutting class and hanging out in the bathroom, or smoking there? 

And having to reiterate every six weeks that "Yes, my son still has the same incurable disease he had six weeks ago"?!?!?!?!

I had printed out a sample 504 template that I found on the Crohn's and Colitis Foundation website. My daughter found it and started reading aloud, and we agreed that many of the "accommodations" are merely basic human rights. They have to let the kid go to the bathroom? Yup. If the bathrooms are locked, the kid gets a key? Good grief, yes! Another item in the template said that the kid should only have one major project or test in a day, which is also perfectly reasonable for pretty much anybody. 

My son just graduated from the same high school that my daughter will be entering in the fall. He tried never to use the school bathrooms because they were so odious. I am going to try to get a 504 in place for my daughter that includes the right to use the staff bathrooms.


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## Aniuko

I haven't been active lately, but I am back...I am a mom of almost 14 year old teenage girl. She is on Remicade since November '12 and she is doing great. A couple of times her calprotectine levels were up and we worried that she had a flare up, but they magically went down again. Kasia was on MTX for the first year of Remicade treatment and now is off...and is SOOOO happy! I am happy to be back!


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## Jmrogers4

Welcome back Aniuko!
Dalton'smom, have to agree with everyone else.  Every 6 weeks?  We review once a year at the beginning of school unless something changes and needs to be added then I can call a 504 meeting.
Jack is switching back to public high school next year and I have been in contact with the counselor who pulled up his 504 from 8th grade and asked if anything has changed, no so it is being reinstated and we will meet the first week of school to sign off and follow but that way all his teachers have a copy before school starts.


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## jjohns23

Aniuka, I am so happy to hear that Remicade is working well for Kasia.  Makayla is having her second treatment on Thursday and I am so praying that this will continue to be a good change in meds for her.

Daltonsmom, Makayla was in so much pain a couple of months ago, as long as she was sitting she was ok and going to school was no problem.  Moving from class to class and walking up the stairs was too painful, so she was given a wheelchair and an elevator pass and the students took turns pushing her from class to class.  The bathroom situation was another horror story, so much pain and so embarrassing that the nurse now allows her to use the one in her office which affords much more privacy.  Of course Makayla only uses these options when she can not endure.
Get an administrator on your team!

Jo


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## Daltonsmom

Trust me,  I wish I could handle this another way.   In addition to traveling far for his Remicade treatments every 6 weeks....meeting with the school system every 6 weeks,  and trying to hold down a full-time job, and take care of 2 other children.........my schedule is full 

I have tried to get them to understand that there is no cure for this disease, and that he will always be ill.......I just want him to have the ability to use the restroom anytime he needs it, even if it is 20 times a day !

Luckily, he has a great sense of humor.......all around he is a terriffic kid who rolls with the punches.  It is me that gets annoyed with red tape and such.   I just want him to be a normal 7th grader, not too much to ask right ?

I do have his 504 to include extra time for SOL testing, and 2 extra days built in when he is admitted to the hospital....that way he has a bit of extra time to make up assignments, or take a difficult test at a slower pace.   I felt that was important, especially when he is feeling less than stellar


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## my little penguin

We have multiple letters from DS's docs permitting him many things including unlimited bathroom privledges as part of his 504. He also never has to ask . He just gets up and places a card with him name on it on the desk so the teacher knows where he went.
I will say he still doesn't want to use the bathroom since he misses class time and the work is suppose to be done in class not at home so...,
Only so many hours during the day you know .
Never easy


----------



## DustyKat

Mehita said:


> Do any of your kids have boyfriends or girlfriends? Have they told them about their disease?


Sarah has had a few boyfriends with the last two being pretty serious. She was very open about her Crohn’s at school and at uni it was pretty much known because of her work as the disability officer and also picking up that sort of role in her political postings. 

Her boyfriends certainly knew. The second last one I think may have had some issues with her Crohn's so he was dumped. I am positive the last one didn’t but Sarah ended that one too! :lol: 

Matt? I have no idea. I assume he doesn’t have a girlfriend because he rarely goes out other than to uni and soccer. I don’t imagine that is very girlfriend sustaining! :ylol: 

Dusty. xxx


----------



## ChampsMom

Mehita said:


> For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?


I have a couple things that I watch for:

1) Attitude... he has MUCH  more attitude when it's normal teenager fatigue.  2) All over appearance - he "looks" different when it's an IBD fatigue.
3) How long he sleeps.


----------



## ChampsMom

Mehita said:


> Do any of your kids have boyfriends or girlfriends? Have they told them about their disease?


Alex is very upfront about his disease.  He is regularly meeting new kids through church activities and they always do ice breakers - it has become his "go-to" answer for "Tell us 3 things about yourself." :rof:


----------



## ChampsMom

I'm in too... I really love the idea of this support group - as much as I have appreciated the whole forum and the TONS of information and support I have received, teenage stuff is different.

My son was diagnosed 4 years ago and is now 17 (and a half!!)  I can hardly believe it has been 4 years!

He continues on the same medication routine and is doing well.  

The toughest thing is keeping on top of his meds (or moreso making sure he stays on top them)!


----------



## Clash

ChampsMom, I'm am so with you on getting them to stay on top of their meds! C is 17.5 too and his pillbox is a nagging point. Oddly enough, because of this I worried about compliancy when we started EN yet he goes through the hassle of pouring up formula, priming and connecting every night without prodding. Where as popping a couple supplements and pills daily needs constant reminding!


----------



## bellewis

My son Dom was diagnosed at 11.  He is now 17.   Nothing seemed to help him until he began remicade 3 years ago.  It was a life saver.  He has extensive Jejunoileitis.  We had to recently add methotrexate to the mix because he has been losing some response to remicade and his joints have been hurting.  He has a gf who tells on him when he eats something that is "going to murder his stomach".   I wish the remicade worked like it used to, but I am really, really interested in the clinical trials in Canada for Qubiologics.  I just feel it....  You know?


----------



## Twiggy930

bellewis said:


> I am really, really interested in the clinical trials in Canada for Qubiologics.  I just feel it....  You know?


I am super hopeful about this too!


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## greypup

Super hopeful here too! I'm also encouraged by the fecal transplants.


----------



## Tesscorm

Mehita said:


> For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?


Mehita, I missed your question earlier...  The best answer I can give is look back 6 months and is his current fatigue 'different' to how he was six months ago??  Prior to S being diagnosed (before crohns was even a thought), S had lots of fatigue but, while in hindsight, it seemed to happen quickly, at the time it didn't seem to be that way.  He started to fall asleep after school... blamed the extra phys.ed. class (even though he was always very active... wud one extra hour really 'fatigue' him), blamed hockey play-off schedule (even though he'd played hockey all his life!), etc.  :ybatty::ybatty:

The same happened with me when I my HGB was extremely low...  I started falling asleep almost every Saturday and Sunday afternoon...  I NEVER do that!  But, at the time, it didn't seem odd to me at all...  easy to explain away - late night, busy week, quiet afternoon, etc.  Actually, at my check-up just before finding out how low my low HGB was, dr asked me if I'd been fatigued lately and I said 'no, nothing different'. :lol:

So, don't compare to last week or the week before...  compare how he is now to six months ago.


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## SupportiveMom

Well this is a teen with IBD issue if I ever heard one. I can't believe I am saying this in public. 

We were in ER again for D vomiting up her NG tube a 4th time, as I mentioned in another thread. The ER doctor didn't have the greatest bedside manner, & we were there over 8 hrs (never had to wait that long ever, it was a very busy night). When the ER doctor came in without even seeing us, just tube in hand saying lets start this, D woke up and told him to F*** off, she wan't putting that tube in again until they figured out why she keeps throwing up!

I can't say I blame her for the attitude, but COMPLETELY out of character for her. The ER doc left and hollered to the nurse to get pediatrics down to ER cause he 'wasn't dealing' with this kid. I kinda laughed at that reaction.  Later the doc said he thought she might be vomiting on purpose & I lost it on him (Basically a jerk of a doctor). Once we got peds down (they knew us already, really the ER doc should have just read all of her chart from the hospital duh!) they talked to us about it all, and D said she was afraid of vomiting again so we opted not to continue (after we woke up her GI at 5 am on the weekend).

D has never refused any treatment (the NG tube was her idea with her doctor!) but I get why she did. Anyone ever have a negative reaction to treatment from your kid? 

FYI we think the reason EEN failed was the formula she was on, but because she refused to try again we won't know for sure. I also have 8 cases of Peptamen Jr. I have no idea what to do with...


----------



## Jmrogers4

I tell my kids all the time that there are appropriate situation for swear words and they loose their UMPHH if you use them all the time.  Sounds like it was a good time to drop an F bomb.  Poor girl had reached her limit and I can't say I blame her.
Sounds like he was looking for the easy answer thinking if she doesn't want it in now then she must be making herself throw up.  What an A hole.
Jack absolutely refuses Pred... Flat out told his GI not to prescribe it, he wasn't taking it.  We got him to try a 5 day burst but would not go for full course.  He doesn't like the way it makes him feel.


----------



## greypup

Yep! We came home w/a NG tube last year after finishing TPN.  I bought 8 weeks worth of formula and M was on it for maybe a week.  She couldn't tolerate it, made her nauseated and miserable.  It was also her idea, we didn't have to talk her into it.

Several months later, while having stomach pains she opted to try again, but not with a tube, just orally.  She tolerated it much better.  After about 3 or 4 weeks (I honestly forget) she was nauseated again and stopped.  Even that shorter duration spared her having to use steroids. 

I ended up donating my cases of formula to the pediatric GI dept at our hospital.


----------



## SupportiveMom

Donation! Great idea!


----------



## lbligh

SupportiveMom, I didn't know whether I should laugh or cry to hear about your terrible Emergency Room ordeal.

My son for many years was part of a community service project at Georgetown University Medical School, where teen actors trained in improvisation did workshops with the medical students to give them practice in how to interact with teenagers. Apparently the workshop is considered a vital part of the training and they even did a demo at the American Academy of Pediatrics conference. Obviously that ER doctor would have benefited from being taught how to talk with teens!


----------



## my little penguin

Oley foundation takes donations of formula and gives it to other tube fed people in need.
There is also children's magic foundation
Not sure about in Canada .

Love the language .
Shows she has spirit .


----------



## CarolinAlaska

I can totally relate!  My girl would be right there totally understanding.  I hope they can find out why she is vomiting.  Was the feed too fast?  We had to do a lot of juggling of formulas before we found something that worked - ended up having to drink it because the NG tube was not going down again...  Now she won't drink any more...

Oh, and I've got a garage full of Peptamen Junior too, and Ensure, and some other kinds as well...


----------



## SupportiveMom

Our hospital will! Take it as a donation, but only the full cases. I will have like 8-9 left. I think it was the formula that didn't agree with her. Now I won't know if EEN would have worked. Now she's on prednisone so here comes a lot of attitude!


----------



## malorymug

So glad I found this group!  My 13 year old boy has just been diagnosed with CD.  I love reading about your experiences with fatigue.  Prior to diagnosis we were convinced my son was depressed because the daily fatigue was so severe.  Therapist after therapist assured us that he was okay.  He's been on prednisone for two weeks now and I think I have my kid back again. Back to sleeping only 10 hours a day.

On the line of therapists, do your teens see someone to talk about their feelings about their disease?

Thanks.


----------



## kimmidwife

My daughter has refused things too. Prednisone is her major thing that she absolutly refused to take. I can't blame them though they have been through so much and sometimes they just need to take control. I think it is also a part of growing up.


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## SupportiveMom

Malorymug at our 2nd hospital stay we started seeing a family therapist who works on the peds ward. We say him for about 6 months and haven't seen him again. It helped us for a bit, but we probably should have continued. Just hard to keep up with one more appointment. My older daughter has been having a hard time coping with her sisters disease and just started seeing someone. Surprisingly D isn't interested in speaking to someone else about it, but she has a great network of friends that support her. Starbright is also great for the kids online.


----------



## CarolinAlaska

malorymug said:


> So glad I found this group!  My 13 year old boy has just been diagnosed with CD.  I love reading about your experiences with fatigue.  Prior to diagnosis we were convinced my son was depressed because the daily fatigue was so severe.  Therapist after therapist assured us that he was okay.  He's been on prednisone for two weeks now and I think I have my kid back again. Back to sleeping only 10 hours a day.
> 
> On the line of therapists, do your teens see someone to talk about their feelings about their disease?
> 
> Thanks.


Yes, my daughter does, and it has been quite helpful.


----------



## frustrated mum

I am new to this site. I have a 12yr old girl who has been sick for 18mths now. The drs dont know what to do with her besides pain management. She has all tests done besides a colonsocpy which they wont do. She has constant abdo pains. Nausea. Diorhea. Dizziness. Reflux and headaches not constant but daily. She is gluten and lactose intollerant and the only other thing she gets is mucosa in the neck. She was always a healthy girl with neva any problems until 18mths ago. They r saying its either in her head or she has FAP IBS and abdo migraines. Am at my wits end with it all am looking into getting a second opinion. I have been told by numerous people that it could b crohns and have suspected this from the start. I did try and get dr to do colonscopy when they did the endoscopy but the dr wouldnt do it. What r ur opinions.


----------



## Sascot

Sorry to hear your daughter is struggling. A second opinion is definitely important. Our docs can be reluctant to do colonoscopies as well. Has she had the faecal calprotectin test done. This shows whether there is inflammation from a stool sample. It is the only test that ever shows anything for my son and is the only reason we got a colonoscopy. Doctors weren't even expecting to find anything (I had been trying to get help for about a year) and there was Crohns. Good luck, hope you get answers soon


----------



## frustrated mum

Hi sascot. As far as i know they have taken one stool sample in 18 mths and it wasnt checked for that faecal calprotectin. I will ask the dr when i c her next. Thanx for the info.


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## upsetmom

Hi frustrated mum. I'm sorry to hear about your daughter..:ghug:

We too had a hard time convincing my daughters DR to do a colonoscopy, but in the end l told him if he wasn't going to do it l was going to find someone who will. She was 14 at the time and was sick for a year. You need to find a DR who will do a colonoscopy.


----------



## Catherine

Sorry you had to find us.

Another Australian mum here.

Faecel calprotectin test can be order by a gp.  This test is not covered by Medicare, get quotes from the labs as the price varies.

Have you obtain a referral to GI?  Can you afford to go private?

What blood tests have you had done?

Please do not except to dx of IBS without further testing.  IBS is a dx of exclusion.

Still kicking myself for accepting the IBS dx for my daughter:ybatty::ybatty:


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## DustyKat

Hi frustrated mum and :welcome: 

I am so sorry to hear about and it breaks my heart to read your story. :ghug: 

I know exactly what you are going through. My daughter went undiagnosed for 18 months, she too was healthy to that point and only received her diagnosis via emergency surgery. Aside from the diarrhoea, my daughter tended to constipation, many of your daughter’s symptoms were the same as my daughter’s and we too received a diagnosis of abdominal migraine. IBD wasn’t on the radar so she never had a colonoscopy either. 

My husband has a first cousin with Crohn’s and on reading up on it I felt Sarah had enough symptoms to warrant it being looked into. She was admitted to hospital that same weekend I told the paediatrician that we weren’t leaving until they proved to me it wasn’t Crohn’s. I was pissed off and had had enough. I was essentially demanding a scope but she ended needing surgery. Even going into theatre they were saying it wasn’t possible she had Crohn’s and they were going in to do an appendectomy and have a look around because she was septic. Well how wrong they were! Grrrrrr. 

Are you seeing a paediatric gastroenterologist? If so where? 

Since the doc is adamant that he doesn’t want to a scope then do as Sascot has said and get a faecal calprotectin done. They are a non invasive way of guiding a doctor as to whether to proceed with a scope if they have doubts. Also have bloods done for the inflammatory markers CRP and ESR.  

Did they say why they won’t scope? 

Does she have any growth and/or weight issues? 

Sorry for all the questions mum. :ghug: 

Dusty. xxx


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## frustrated mum

Hi again to all. I want to thank all of u for just giving some info. As all of u would know it is a long frustrating time. She has had all blood tests that they would do. Not exactly sure on what but mainly on things like guardia etc. She also has barium meal follow thru. Xrays. Ultrasounds. Mri. White cell scan. And an endoscopy. They wont do a colonscooy cause they said it dont mske sense as she has no other positive tests to say do it. And they say its invasive on a girl her age. She had lost 6kgs at the beginning of all this. But is stable since then. She has only gained bout 2 kgs since. We have been seeing a gi ped in westmead sydney. But she has told us she has exercerted all her tests and theirs nothing more she can do. So its off to pain management clinic. Looking forward to hearing what u all have to say. Thanx


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## DustyKat

I have no issue with her being referred to a pain clinic as they are a very useful tool but I still think they need to get to the bottom of the problem. 

Enterography has largely overtaken the barium follow through so I am not sure why they did that one. The MRI that was done, do you know if it was an enterogram or an MRI only? 

So they will go almost all the way with testing and then stop saying a scope is too invasive. Since a scope is still the gold standard in diagnosing IBD then they are effectively locking that out and that just doesn’t make sense. I mean I know what they are saying about invasive tests but what, they risk a diagnosis for the sake of some misguided idea of ‘niceness’? Ugh! 

Okay, they don’t want to be invasive so they can do a pill cam instead!  

Sorry, I am sounding very cynical.  

I think a second opinion would serve you well at this point mum. 

Dusty. xxx


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## frustrated mum

I didnt worry about the invasive part of it cause they were putting her under for the endoscopy procedure as well. I think they only did mri not enterogram. They have just recently done another barium meal follow thru xray to check. Im not sure y. Just to make sure her bowel is working ok with food going down. Will b looking into a second opinion. Not happy


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## DustyKat

I hear you mum. :ghug: 

She really needs a colonoscopy and I well understand your frustration at them not doing it at the same time as the endoscopy. Imaging will only show so much and it cannot replace the eyes of a GI actually looking at the bowel and taking biopsies. 

A scope in conjunction with an MRE is your best bet and perhaps even a pill cam. 

Tagging upsetmom, you go to Randwick don’t you? If so how are the docs at the IBD clinic at Sydney Children’s? 

Dusty. xxx


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## frustrated mum

I have heard bout the pill cam. Also heard it costs al9t of money but will do what i can. Thanx


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## upsetmom

My daughter does see the DR's at Randwick but she was already diagnosed when we were referred there.  

The DR's are good so maybe get a second opinion there. 

I hope you get some answers soon.:ghug:


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## Catherine

Is a private an GI option?  Do you have private hospital cover?


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## frustrated mum

We dont have private hospital cover. But will get a referral to c dr in randwick. Have also been told to try acupuncture and chinese med.


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## Catherine

I personally would be attempt to move forward with get a referral for the faecal calprotectin test.

I am currently waiting for the results of the test for my 15 year old DD who has been dx with low iron (ferritin) of unknown origin.  The GI we saw was also unwilling to further testing but my daughter has far less symptoms than your.

The test is not covered by medicare and appears to cost between 40 - 120 per test.  I was told the current test will cost $50, previous tests have cost me $40.  The other lab I could use is quoting $120.

Your other course of action is ask your current gi to explain to your why the dx is FAP IBS and what they are going to make your daughter better and what there course of action would be if the treatment did not work.


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## frustrated mum

The course of action for ibs is mainly diet. The course of action for fap is pain management. Im going to c my gp on friday and ask her about the faecal calprotectin and also bout some more blood tests for crp and era. I will also get referral for another gi and c how we go from their. Thanx


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## Catherine

As a diet for IBS look at FODMAP

I have a dx of IBS myself, my faecal calprotectin and colonscopy were negative. When my daughter (who is now dx with Crohn's) and I did the FODMAP diet I my symptoms improved within days of starting the diet and daughter got sick and sick.


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## frustrated mum

Yeh we have tried all the different diets the drs have recommended and they dont seem to make a difference.


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## lbligh

What kinds of diets have your daughter's doctors prescribed? My daughter's doctor wanted a "low residue" diet and that didn't work at all, not to mention being pretty bad for you (no fruits and vegetables?!).  I think very few doctors in our area even suggest the low-starch diets such as Paleo and SCD, both of which help many people and are quite healthful.


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## Jmrogers4

Most GI's go with a low residue in the beginning not so much to control disease but more for ease of digestion so food/fiber is not scraping along inflammed tissue.
It seems diets help control symptoms but maybe not disease activity so much.  Fwiw we have tried Paleo and SCD our biggest issue was getting enough calories of legal foods.  We ended up modifying and basically now try and stick with a clean eating diet although we certainly are not 100% but we do try.  When in remission he is able to eat pretty much anything with no problems, we of course always stay away from popcorn and seeds.


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## my little penguin

I agree with the low residue for flares-
everyone is different - kids especially.

Ds can not tolerate raw veggies period- gives him stomach cramping and watery D.
Cooked is fine.
We may revisit it later per the GI just not a good idea now.
 .


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## Maegans mom

My 14 year old is on the low residue diet and it stinks!  She is so tired of eating junk and misses her fruits and veggies.  We have also been been weening her off of the predinisone (down from 60 to 25) and that makes her hungrier.  She is feeling so yucky that she has no energy and doesn't do dance anymore.  She is on the azathioprine and other meds also.  She has started gaining weight, and growing hair and is really depressed about this situation as well as being sick.  Any suggestions moms on how to comfort her?  Teen girls have enough to deal with but this too...  Just doesn't seem fair.


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## Maya142

So sorry to hear she's having such a hard time! What about soups or smoothies if she's missing fruits and vegetables and is hungry? Also, some of her weight gain may be water retention - it should go away after she's off it.

When my daughter was on prednisone I just emphasized that all the side effects were temporary. 

Prednisone can affect moods, so it's possible some of her moodiness is from that. My daughter didn't have problems with moods while on pred but some parents on here have mentioned that their kids did.


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## lbligh

Maegans mom, I'm so sorry your daughter has been feeling so lethargic. It really is totally unfair. 

My daughter will be 14 soon and was diagnosed in December, so our family has been going through this for about the same amount of time as yours.  One of the things that was terrible for my daughter's morale was that people stopped inviting her to things like birthday parties, "because you won't be able to eat anything." She was very brave about telling everybody that she would rather come to the party or the outing anyway. I talk to her friends' parents about what she can and cannot eat. I am very open about what the disease is, because if we were mysterious about it, people would assume it was something fatal.

We gave up on low-residue in March and tried the Specific Carbohydrate Diet. It helped almost immediately and boy were we excited to get fruits and vegetables back into our family diet. We were able to taper the prednisone from 25 to zero in a month. For us it was like a miracle cure, but I know it isn't quite so dramatic for most people. Our daughter's doctor didn't tell us about the diet, we heard about it anecdotally and did our own research. My husband is still really steamed that the doctor knew about the diet and had at least one patient who was doing well on it, but didn't even mention it as a possibility. I guess the doctor thought it was too difficult to stick to, but by the time we started the SCD it seemed as if my daughter couldn't eat anything but eggs and rice, so we felt as if a whole banquet of possible food had been set before us.

There's actually excellent science behind the diet, and small scale trials have been written up recently in scholarly journals. What really needs to happen to make doctors pay attention is for there to be a large clinical trial, but so far the funding is not there.  U.Mass. medical school tested a similar diet for IBD and I hope pursues it: http://escholarship.umassmed.edu/cgi/viewcontent.cgi?article=1025&context=cts_retreat


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## frustrated mum

Where r some good recipes for lcd diet for kids and snacks.....am struggling to find some my daughter would like.


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## lbligh

Frustrated mum, how old is your daughter? Mine is 13 and really enjoys researching recipes. If you tell us some of the snacks she likes, I'll try to suggest SCD alternatives.


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## frustrated mum

Ibligh. My daughter is 12 and likes choc ice cream and all the things that are hard to find. Although she does love her fruit and veges just a very plain eater and gets sick of eating the same thing. Has ur daughter been diagnosed??? My daughter hasnt. And have been told once again today that its in her head and she needs to c a psychiatrist....


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## lbligh

My daughter has been diagnosed with Crohn's but none of the doctor's diet recommendations ("low residue"!) helped at all. The Specific Carbohydrate Diet brought about a huge turnaround though. Because it is similar to the Paleo diet, there are lots of recipes online, so we have been using a lot of online Paleo recipes as well as SCD.  One of my favorites is http://comfybelly.com/ and there are many others. 

I tend to look for recipes where the blogger says something like "This is the seventh recipe for this dish I have tried, and my kids love this one and wouldn't eat the others."

You're right, variety is important. It took us a while to get over the feeling that some fresh fruits were "too expensive." They aren't if they help keep her healthy, so we go for variety and also get her tons of blackberries no matter what the season! Obviously this depends on what diet you are using, as well.

My daughter doesn't like the SCD "bread" type things at all, and most of the recipes we have tried that involve coconut flour have not been a success. We eat a lot of grilled meats and fish, trying to get good variety in. We found a type of sausage that is SCD legal, and a brand of bacon that is also legal. Lots of omelettes and scrambled eggs with vegetables for breakfast, with some kind of fruit. When we have more time for breakfast, she likes "paleo pancakes" which have bananas and coconut flour and eggs in them. Lunch is either leftovers in a thermos bowl, or a lettuce wrap, with some cut-up fruit, maybe veggies with a dip, a little bag of nuts, and some SCD-legal cookies. The cookies are very good but don't keep too well, so I make half-batches often. 

I really try to make her lunches good. Lunchtime at school has a lot of temptations to "cheat" on the diet. Kids like to share their food. Lately she has mentioned that she shared some of her SCD-legal treats with her friends and they agree that they are yummy! Victory dance for Mom!

There's a recipe on Comfybelly for Chicken Tikka Masala that we all absolutely love. It uses SCD yogurt as well. We eat it with cauliflower rice, and it is great the next day and in lunches. I intend to try other spicy recipes soon.

Last week we got a deep-fat fryer because we realized that there wasn't anything "legal" on my daughter's diet that was also crunchy and salty. So far we like celeriac chips and mushroom chips the best. I need to experiment more. Not the most healthful way to eat vegetables but good for an occasional treat.

Ice cream and chocolate are not allowed on my daughter's diet. Smoothies with fruit and SCD yogurt are good. Sometimes she makes them, sometimes I do. Different every time. I keep frozen banana slices in the freezer to add to smoothies. Frozen seedless grapes are very good eaten plain, like little nuggets of sorbet. Last week I made the SCD yogurt with half-and-half and made some really good strawberry frozen yogurt.

My daughter is a little older than yours, and she likes to go out to the mall with her friends, so we did a lot of research to identify things she can eat under those circumstances. In our area, for example, she can get lettuce-wrapped burgers at Elevation Burger or Five Guys, and at Chipotle she can have a salad with carnitas, no rice, and guacamole if she wants it, etc. etc.  There is also a kabob place that has food she can eat, where they will give her the meat with a salad.

It really helps her feel she has some control over what she eats, if she does the research herself. But that's just her personality. 

It's all rather time-consuming and expensive, but a lot better than surgery!


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## SupportiveMom

Yesterday I took my daughter for her first official undergarment shopping at a store dedicated only to that. (Up until now bras and underwear have been bought at target, children's place, sears, the bay, etc.) . It was an experience I was looking forward to and carries mixed emotions that she is actually growing up. Looking at the underwear I noticed she was picking dark colors, or ones that were well lined in the crotch area. I thought maybe she was doing it for 'that time of the month' so I explained about having "granny panties" for then. 

She told me she was choosing ones that could cover stains that happen from diarrhea or leakage and it made me sad crohn's has creeped into this part of her life. I kinda expected it but it still made me sad.


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## Maya142

Has she ever used panty-liners? My daughter does when she's having bad diarrhea - won't prevent a big accident but at least her underwear doesn't get stained from leakage. 
Sending hugs, hope things improve soon!


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## my little penguin

^^^ yeah that
Panty liners work well - I think more than a few of the adult guys here use them as well since they are thin and absorbent .
You go with what works


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## SupportiveMom

Yea she uses them but they move around on her so they aren't a favorite. I posted about these butterfly pads for ABL but from what people are saying it probably won't help much either but for $7 I'll probably try.


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## momofboy

My 13 year old son was disgnosed with Crohn's this week, his GI wants to start him on Remicade next week.  Any information for this would be greatly appreciated.


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## habbymomma

momofboy - so sorry you having to go through this. My son was 15 when he was diagnosed. He has been on Remicade for a little over one year. Until recently, it was working just fine. No complaints of side effects or anything. At first, we were at the hospital for 5+ hours getting the infusion. Now the infusion itself only lasts 1 hour and if the nurses aren't busy we can be done in less than 3 hours. Make sure your insurance covers Remicade, and be sure to submit for the Remistart program that will cover all but $50 of the cost of the Remicade itself. 

Best wishes to you!


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## momofboy

Thank you for replying! Was Remicade the first drug they put your son on? I am reading horror stories about this drug on other forums and it all has me so stressed and upset so glad to hear something that is not scary.


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## habbymomma

He had surgery and was on entocort until we could get insurance approval (which took 5 months). I also read a lot about Remicade, and had talks with our GI and his nurse. In the end, we decided that since we trust the GI and know the risks, we would follow his recommendation and start Remicade.


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## my little penguin

Remicade was a miracle drug for my kid.
We spent a year on the lesser drugs which didn't do a lot and most of the time made him sicker.
He started remicade at age 8.

A lot of parents on here have had success with their kids on remicade.
Tess
Jmrogers
Crohnsinct

To name a few 

Highly recommend it.
Everything has risks 
Riding on a car
Swimming
Taking Tylenol 
All of which can kill you 

Biologics give kids the best chance at changing the disease course( reduce likelyhood of surgery ) when given early.


See the parents Ibd research section at the top of the page .


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## Hope345

Remicade worked somewhat for a while with our daughter and after 13 treatments, we stopped it and have moved towards a naturalpath which she is doing well with.  The Remicade came at a time when she needed it, and now it is time to move a different direction.          It is different for everyone and a hard call for us to make, but we are building her immune system up rather than bringing it down at this time.             She went from bad to worse for awhile, and I almost had a breakdown myself...  but now she is doing so well.    However, with IBD, you just take it one day at a time.               

It was recommended to use Imuran with Remicade for best results.   This is another big decision however, because of the long term effects or possible side effects.  The people that have gotten cancer from these meds isnt very high, I was told.  They are life changing drugs for some many.


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## Maya142

My daughter has also been on Remicade and when it worked, it was a miracle. No side effects or anything, and she quite enjoyed the infusions - it was a day off from school and a chance to relax and nap and watch tv. 
I don't know where she would be without biologics, I'm so grateful that they exist!


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## Jmrogers4

It has been our miracle drug so far.  He did okay for 4 years on the various "milder" drugs but was not thriving.  We started Remicade in January and it has been a complete turn around we have even had to adjust the dosage to account for growth (which had been stagnant for 4 years).  We are enjoying our longest remission to date.  I fought remicade I was terrified of it I think in my mind going to remicade I had to admit that he was sicker then I thought and always had excuses that he was not that bad.  His labs have always been normal regardless of disease activity and he does not present with "typical" symptoms.  I wish we would have done it sooner then maybe we would not be playing catch up in regards to growth and puberty or at least not as much.


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## Patricia56

Remicade saved my son's life in January. I would not hesitate to do it again. 

Remember that most people posting to online support websites are sicker than is typical. Many have had poor care and are frustrated with doctors or their health system. some have had difficult experiences like post-surgical complications or drug reactions that are rare or very, very uncommon.

The people who are in remission generally do not post to these websites. They are busy getting on with their lives. So you don't get a balanced view of things like drug reactions and side effects.

The bottom line is whether you trust your child's doctor. You need to have a thorough discussion of the reasons for his recommendation and share your concerns. Whenever you are discussing treatment options you should consider BRAND:

B - what are the Benefits
R - what are the Risks
A - what are the Alternatives
N - what if we do Nothing
D - Decide


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## Ands

Patricia 

Your message was just what I needed to see this morning.  We are feeling helpless towards J, he's just slipping into a place we don't want him to be.  Bloods results are normally OK, apart from ferritin was low last time, he has constant tummy pain, feels sick and the fatigue is unbearable.  

We know he is an anxious child and this is all the drs seem to focus on but surely we are right to want more for him.  The BRAND principals highlight what we have been thinking, alternatives?  Something never really discussed but I think the time is righty too.

Last night I cried as DS's friends walked by our house on the way home from youth club, something which J didn't feel up to going to and then poor J spent hours trying to get to sleep, as got himself worked up thinking what was the point, as sleep doesn't make anything better!

I take my hat off to him, he's gone into school this morning but I'm picking him up at break, the afternoon is all non academic lessons which he can afford to miss.

On top of this last night I spotted stretch marks on his bum!  His weight hasn't increased (if anything decreased on Gluten and Dairy Free diet), is this just normal growing things in a 12, soon to be 13 year old?

Sorry to vent but I know you all understand.  Thanks. Xxxx


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## Patricia56

The stretch marks are probably from the prednisone. My son has them on his stomach and won't go topless because of it.

My son was seriously depressed for nearly 3 years from about 13 to 16. He was in remission, I had no doubt of that. It had taken us almost 3 years to get him into remission. His labs were nearly perfect, he had no bloody stools and no constipation - his chief symptom. He was growing, slower than we would like but still growing.

Despite our certainty that he was in remission he had severe fatigue, intermittent belly pain and generally felt bad. He pretty much stopped going to school for about a year and a half.

when his depression lifted the only thing that was left was fatigue but not so bad he can't function fairly easily most days.

I am not saying your son is depressed or in remission. I'm just offering you my experience FWIW. Clinical depression comes with very real physical symptoms such as the ones you are describing. This confuses the picture with our kids leading to uncertainty about remission and distrust of doctors who suggest that there may be something psychological going on.

Because of the severe stigma of mental illness, many people reject the possibility of depression as a cause for physical symptoms and feel insulted/angry/abandoned by any doctor who suggests it.

I know of 3 boys who attempted suicide, including my own, because of the severity of their depression as teens with CD.

when you go back to the doctor, along with Crohn's I urge you to be open to hearing whatever your son's doctor has to say about what's going on and following all suggestions including seeking psychological assessment if that seems appropriate.

As for labs being normal, my son's labs were all normal 4 days before he went in the hospital in January with 30+ bloody stools a day. It's clear he had not been in remission for a while - perhaps several months - because his weight had gradually been dropping. Now that he's in solid remission he's up to 160 where before hospitalization he was 132. I do not judge remission based solely on labs.

The questions I ask are:

Is he growing? Measured over a period of at least 6 months during which he is supposed to be in remission and is not on prednisone or entocort.

Are there any trends in his labs that are troubling even though they may not be severely abnormal? Ferritin is one I follow because my son's ferritin starts to drop before anything else goes wrong. But ferritin is tricky - it can be meaningful when it is too low but it can also be meaningful if it is going up. Increases in platelets, shifts that persist and get more extreme among the white blood cells.

Does he have any blood or abnormal stooling?

Is his belly tender or sensitive?

Is there a clear pattern to episodes of pain?

You know your child. If you think he is not in remission then stick to your guns and request more imaging or a new scope or a change in treatment plan. If his symptoms are so severe that they are interfering with his ability to go to school and  hang out with his friends then he is not well - for whatever reason.

All the best


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## Ands

J is seeing a counsellor, every three to six months.  It does help but J then slips back during the time in-between.  We are not in any doubt that he is suffering from some form of depression, I guess just looking for that one 'miracle' thing to break the cycle.  

He is in school, most days, and is achieving in the top percentage of his year but that uses all his energy, he comes home drained to the core.  His tummy pain is constant, be it a school day or weekend and his BM are erratic, either nothing or everything, if you know what I mean!!!!!!!  He is however growing....

What you've been through with your son sounds so sad.  It is hard enough having a condition such as Crohn's, then as you said coping with a mental illness as well makes things even harder, all this whilst going through puberty!!  I know J doesn't even talk about the Crohn's at school, let alone anything else.  I am so grateful that despite all the anger he has at times, he does talk very openly to me, I just hope that continues.

Still waiting on blood test results, and a call from dietician.....

Thanks.  Knowing I can write openly here, does help me at least.

Xx


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## Patricia56

Teens should be seen every WEEK if you expect to get meaningful therapeutic results. Every two weeks at most.

If you see a clear response to the therapy then I would do whatever you can to increase the frequency of those visits or pay for private therapy (I"m not quite sure how things work across the pond). 

As long as he is suffering any significant level of depression you are going to have a hard time distinguishing between that and low level CD symptoms. IMHO. And depression deserves to be treated just as much as the CD so I would press the medical system there to actively treat his depression.

It is good that he talks to you but he is reaching the age where he should be pulling away not drawing closer. For his long term well being (and yours), friends and outsiders like therapists are the people he needs to learn to turn to for most of his support and companionship. It's a tricky time with no road map when you have a kid with chronic health problems. You have to stay engaged regarding their physical well being at a time when, developmentally, you should know less and less about how often they poop, to take one example not at random.

I think it's not unusual for our kids not to talk about their disease. My son goes to a Health Professions high school and STILL doesn't talk about his disease even though he knows a lot of the kids will have some understanding. He says no one wants to talk about pooping including him 

I am very thankful to say that we got through it and have come out the other end when it comes to the depression. Weekly therapy and medication and family therapy all helped and he is much more resilient than before. I expect your son will come through this hard time and be better than before with such a supportive and committed advocate on his side.


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## Ands

Off to see consultant, dietician and counsellor today.  Hoping for a plan forward, whatever that may be!!!!! Xxx


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## frustrated mum

So my 12 year old daughter who has seen so many specialists has been seeing a different natural lady for month now. She has been deteriorating every week with her body cannabalising her muscle and is loosing weight rapidly. She has lost about 3.5 kgs in 4 weeks....they say her body is not digesting any foods and is very malnutritioned. I am pushing for nasal tube as i think she will start to feel better if ahe can get the nutrients i to her and start to do more. She wakes up so weak and tired and has been pretty much bed ridden for weeks now. She is still undiagnosed...what do i do


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## Tesscorm

Have you tried giving her the shakes?  Enteral nutrition, whether as a treatment or supplement, can be ingested either orally (by drinking shakes) or through an NG tube.  Often the same formula is used.  Some of the more common oral formulas are Peptamin, Pediasure, Modulen...  Can you try having her drink a few of these each day?


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## ChampsMom

I don't know how the medical system works in your area, so I'm unsure if my advise would be of any use to you...  I am not opposed to a natural approach if/when it is working, it appears it is not helping at this point.  If getting a doctor's appointment is too far out,  can you go to your hospital emergency room?  They would be able to say if she needs to be admitted to receive IV fluids/nutrition, etc.

God bless...


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## Book Diva

I'd love to join.  My son is newly diagnosed at 15.  He is beginning treatment and the warnings scare me to death!  Trying to stay positive   Thank you for creating this forum!


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## Jmrogers4

Welcome Book Diva,
My son will be 15 at the end of the month.  Sorry you have had to joint our club.  Please feel free to poke around the forum and check out the treatment section.


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## lbligh

Good news to report. My daughter's bloodwork came back completely normal. 

Three months ago she successfully tapered off prednisone, and bloodwork was mostly normal. She had been symptom-free for a few weeks, on the Specific Carbohydrate Diet.

One month ago, when her bloodwork report was mostly normal, she asked if she could discontinue the Pentasa. We never thought that drug had any effect whatsoever anyway. She especially hated it because the capsules were too big for her to swallow, so she was mixing the granules in water, but some granules got caught in her braces no matter how she tried to avoid this. She also hated finding residual granules in her stool. 

We said "Let's try without it for a month."  So we were sort of holding our breath when the lab report came in. But even med-free, all her bloodwork is still great. It was a CBC with metabolic panel, C-reactive protein, Sed rate, some iron levels, and Vitamin D. Everything is solidly normal with the exception of Alkaline Phosphatase, which is elevated, and that's almost certainly because she is (drum roll, please) in a growth spurt! Hurray! She has grown almost an inch in the past month, and gained a couple of pounds.

She has politely requested that we stop referring to "meds" and that if we feel the need to remind her about her pills, we should call them vitamins, which is what they are. All she's taking is Vitamin D3, zinc, and fish oil.


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## Patricia56

Glad to hear she is doing so well.


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## my little penguin

Welcome book diva
Sorry you need us....
The meds are scary but they are just possible side effects not definite ones .
Most members have had experience with one drug or another .
DS was dx at 7 and is now 10.
He is on humira and Mtx.


Lbligh
I am glad your dd is doing so well on scd .
Please realize she is the exception among kids rather than the rule ( most if us here have tried all the various diets ). Maintaining remission for more than a year by diet alone in child is extremely difficult( not due to diet adherence .
Pentasa is only effective as a monotherapy in a very small percentage of crohn's patients .
Be sure her gi is aware you removed the med.
Aslo be sure to request imaging/scopes after a year since this disease can be silent in most even with normal bloodwork .
DS 's bloodwirk is always normal despite having Ibd and JIA .

Wishing you the best that your disease break continues .


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## Book Diva

Thank you so much for the welcome!  Learning so much and this site is so helpful


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## Mehita

Hey, guess what we found today?

Muscles! Like, real ones. 

DS was helping me move some furniture and the muscles on his arms caught my eye. The last several years he was so sick he had no muscle mass whatsoever. Literally, just skin and bone. 

I know it's a combination of puberty, the growth spurt he's in and the conditioning he's been doing for tennis lately, but I've been so concerned about his height that I haven't been paying attention to the rest of him. He actually looks like a teenager now... and a healthy one too!

Muscles!

.


----------



## greypup

Muscles?! That's awesome!!!


----------



## Maya142

Great to hear Mehita!


----------



## Patricia56

Before you know it there'll be a beard or moustache to match. Congrats!


----------



## Book Diva

Congratulations!  I bet he is proud of them


----------



## Clash

As they feel out it is so surreal since they have spent so much time not gaining, so glad to hear of his progress! Woohoo!


----------



## Jmrogers4

Whoo hoo! Muscles


----------



## Mehita

:rof::rof::rof::rof::rof:


----------



## Farmwife

Congrats on the muscles but you might not be the only female to notice.:eek2:
Get ready....their coming.:rof:

:ymad:Jmrogers how did you get a pic of my hubby's arms. :ybiggrin:


----------



## JenniferJuniper

Joining up here as I slowly begin to navigate this site. My son is 13 with no puberty in sight but hoping that will change soon. Who knows, maybe I'll be posting about muscles soon!


----------



## Monnipenni

My son is 18 and was diagnosed with Colitis in March of 2013.  The Dr. put him on Pentasa and he did OK for the next year until June 22nd of 2014 when he got sick and the disease just spiraled out of control.  He ended up in the hospital on July 3rd, had a surgery to drain fistulas on July 4th.  He couldn't go on any drugs until the infection cleared up so he spent the next 2 weeks in the hospital on super strong antibiotics.  They gave him a treatment of remicade and sent him home but he was back 3 days later after a visit to his GI.  He had lost a significant amount of weight and the Doctor was worried so he went back to hospital for another 15 days.  He's currently on Prednisone, Imuran and had 3 doses of Remicade. (The GI doubled the dosage because he wasn't seeing the results he hoped for) Even though he's feeling much better, he's still not gaining weight, having 4-8 bowel movements per day, throwing up, night sweats and abdominal pain.  He has a call with his GI today.  It's very difficult for an 18 year old who just graduated high school and should be heading to college next week.  (We have delayed the start to January)

Oh forgot to mention, they have now changed the diagnosis from Colitis to Crohns and Colitis


----------



## my little penguin

http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/types-of-crohns-disease.html
This explains crohn's colitis is not ulcerative colitis AND Crohn's disease ...
But Crohn's disease of the large intestine  affected for the most part at the present time.

Hope the meds kick in soon,


----------



## Book Diva

Monnipenni-so sorry to hear about your son's struggles!  I think you are so wise to help him get the disease under control before the huge transition of college.  I will pray for his quick response to the meds.  Sounds like they are using a well studied combination to get things under control!  My son is also hoping for remission from symptoms and active disease.  Keep us posted on his progress


----------



## michelepta

Need some advice.  I have an 18 year old daughter who is in her Freshman year at University and I am trying to convince her to go to the GI, while at the same time not wanting to fully disclose how bad IBD could be if she has it.   Her father went anemic last year and after finally getting a pill cam that showed apthous ulcers through out the ileum and he was diagnosed with Crohn's.  He is extremely fortunate and has almost no symptoms at all unless he eats gluten (Doctor thinks he probably is Celiac also since hubby's brother has it and hubby's reaction is so strong even to cross contamination.)  My husband also had Prometheus testing done which showed IBD, but not which kind because he had genetic and antibody markers for both.  Prometheus looks for four genes and he tested positive for three-which even seemed to surprise the GI.  Plus you add in the fact that both parents have psoriasis which is associated with Crohns.

Our daughter began complaining about night time nausea and stomach pain in 10th grade.  Then she started loosing her breath and feeling faint and at the same time she started having hives and angioadema (swelling of body parts like the lips.)  First thing to get diagnosed was her Chronic Autoimmune Urticaria (hives).  They looked to see if the hives were autoimmune because she had autoimmune thyroid since she was nine and autoimmune hives are associated with that.  I noticed they did not run a CBC and since I come from a family of people with Pernicious Anemia I asked for one. I had to switch doctors cause the guy wanted to wait three months-I'm telling the nurse that now she is having to sit in the shower and he tells me to wait three months.  The new Doc saw her the next day and did a rapid test which showed a hemoglobin of 8.1.  When her ferritan came back it was a 1, retested by hematologist the following week who said it was probably wrong-still a 1.  Her B12 and Folate where also low normal, so they put her on those supplements also.  There explanation was her period even though her endocrinologist and I had put her on birth control 14 months before any of this started to control everything and we have always reported a normal period. I repeatedly mentioned that nausea and stomach pain.

We eventually fixed everything with drugs and supplements.  (Although sometime in the midst of this she developed a light case of Asthma.)  Expect she still would have the stomach pains and nausea.  (Which of course now they blamed on the high Iron supplementation even though we always said this came before Iron,)  So I took her to the GI who ran some test for Celiacs, HPV, other critters, had us keep a food diary which showed no patterns and then told us that he did not want to do anything else and blamed her type A personality on it all-I should say the last test he did showed her ferritan had dropped to 6 from 28 while on supplements. I think he was frustrated by not being able to do food allergy testing because when you have autoimmune hives you test positive for every skin prick test.

She wanted to drop it, so I agreed and somehow magically she would have weeks without pain for no apparent reason.
 Her anemia was held at bay even though her ferritan stayed in the late teens and we also found out she had very low Vitamin D.  This February she began with the stomach pains again and by April we had added diarrhea four or five times a day for a month.  We put her on a strict liquid and brat diet and she improved.  Now she doesn't have diarrhea unless she eats certain foods-tomatoes, onions, whole corn, coffee, deep fried fat foods, high fiber muffins, nuts-does this list sound familiar?  She also has to eat small amounts at a time or it brings it on.  

With her Dad's new diagnosis I really would like for her to see what is causing her stomach issues.  The diarrhea is a whole new symptom that will make the GI's listen. Plus her Dad's gene testing and her own two autoimmune issues should help.  (I should also add she just popped up slightly anemic again while taking twice the normal dose of Iron.)  She won't go.  She says she will do something if she starts to have symptoms like April where she had to stop eating.  

She's 18, 5 hours away, and I really have no control except emotional blackmail, which I am loathe to do.  She already takes six pills a day, plus three supplements and she would rather watch everything she eats than go to the GI.  I think she is playing a dangerous game with her health.  Her Dad and brother tell me she is an adult and to let her make decisions.  At least she is still telling me when I ask her about any issues.  Any advice?


----------



## Clash

Michelepta, my 17 yo son is the one with CD but his older sister started showing some symptoms. Honestly, I've always thought her bathroom habits were odd but she is not one to go to doctors. 

Since her brother's dx of CD I think she has been more aware of her symptoms and finally mentioned that her symptoms needed to be seen about. She had normal levels in her blood test except thy the GI said hervitamin B12 was really low. That coupled with the fact that she has symptoms and a family hx made the GI take things seriously, he now wants upper and lower scopes. We've not scheduled them yet partially because getting her to call is like pulling teeth but also because my son is in the hospital after having surgery.

There is a non invasive stool test that determines if there is inflammation in the bowels. It is not diagnostic as more than IBD can cause inflammation but is a good indicator to determine if more investigation is warranted. The test is called fecal calprotectin stool test. 

I hope you soon find answers, my daughter is 21, once she came to me saying things are off I haven't really given her the option of backing out of tests. She knows this can be serious and with us carrying her insurance she knows steps have to be taken.


----------



## greypup

michelepta, 

i'm sending you support for wanting to check things out now, rather than finding your daughter in an emergency situation.  we're supposed to raise our kiddos to let them go, trusting that they will make wise decisions.  the truth is it's much easier to let that happen when it doesn't have to do with their health.  so i'm sending you loads of support, hoping that she will hear you and take action.

(((hugs)))


----------



## justfortoday

Hi I am so happy I have found this forum as it is great to listen and share each others journeys. My daughter Caitlin (11 yrs old) was diagnosed with Crohns disease in May of this year. The doctors put her on Azothrioprine and she has a slight flare up so they decided to put her on steriods for seven weeks. She is coming off the steroids in two weeks time and they are expecting that her Crohns might flare up again so they have asked that we think of Infliximab as another meds to put her on. So that will be together with the Aza (75mg). So here I am hoping that she will not have another flare up..... but only time will tell


----------



## my little penguin

Hope the remicade and Aza work well together.
Remicade was a miracle drug for my kiddo.
He started it at age 8.
He is 10 and on humira now due to allergic reactions to remicade .


----------



## Jmrogers4

My so was diagnosed at 10, now 15 was on azathioprine for many years. In the end it just wasn't strong enough ad he has been on remicade (infliximab) since January and it has been a complete turn around for him.  He is in remission now and looks forward to his infusions so that he can stay that way.
Hope the aza is enough on it's own to keep things under control though, for a lot of people it is.  My husband has been on it for 13 years and it has been enough for him.


----------



## Shellyc

Hi my 16 year old daughter was diagnosed with ulcerative colitis in May. She started in apriso it worked for 2 months then her symptoms returned. We went to a gasternologist who scoped her again and changed the diagnosis to crohns. Now she's on imuran and starting humira injections this week. I am so confused about this. I have read till I am blue in the face. I feel like my daughter is in denial. She will not talk about it. Any words of advice???


----------



## greypup

Hi ShellyC. Sorry to hear that you've needed to find your way here.  Have you considered a therapist? The right one can do make all the difference.


----------



## SupportiveMom

Shelly sorry to hear this is so difficult. The 1st year of diagnosis is the toughest. It is hard when they switch diagnosis on you. We have switched from indeterminate colitis to crohns then UC and back to crohns in the last 2 years. The difference isn't much when you are working on medications to heal and get better. It only plays a big part when surgery comes into play. There is a teen forum here and starbright is helpful. My kid will use them at times. Has she found other IBDers to talk to? It might help her better.


----------



## Shellyc

Thank you so much for the advice. So far we have not met anyone who had bid. We live in a very rural area so it's hard to meet new people with it. I have family in Portland area who knows people with it and they were going to email us but so far nothing. I know she talks more to her friends about it. I will try and talk her into joining the forum. Maybe that would get her headed in the right direction. Thanks again!!


----------



## Book Diva

We are also in the first six months post diagnosis.  My son has started talking to friends about Crohn's.  Hoping your daughter heals quickly, it looks as if the meds are similar to my son's and they promote healing.  Hang in there!


----------



## SupportiveMom

Question... how do you promote positive body image? I want D to feel comfortable in her body when she gets a bag. Any good tips?


----------



## my little penguin

I have a boy so we talk about "fun" options with a bag - most he wouldn't do 
Like making it "fart" etc..,
Not sure on a teenage girl.
Mine was concerned about swimming etc..,
And covers 
Have you showed here the options for covers 
Models and celebrities with bags .
Queen gothel little one has a permanent ostomy .
May she has some ideas .


----------



## my little penguin

http://dansac.com/default.asp?Action=Details&Item=257

This is a booklet for teens with ostomy


----------



## my little penguin

This one seems to be the best
http://www.girlswithguts.org/tag/ostomy/


----------



## SupportiveMom

Oh D will like the fart things. she is a tomboy at heart for sure. She is asking things like "will it smell if someone is near me? & can people see it under my clothes?" We are meeting Jessica Grossman Monday at her talk & I think it could help. Thanks for the booklet link. What other fun things can you do with a bag? How does he handle it in social situations?


----------



## my little penguin

He doesn't have a bag but at one point the docs were talking a lot about rectal surgery -most doc said if we let the surgeons fix the rectal prolapse the odds of him getting a permanent bag were good. Other docs said it didn't increase the risk . No one could agree except that it wouldn't  really help his crohn's only make it worse.
At that point he was in a lot of pain , creams and suppositories weren't working -already on humira etc... Rectal prolapse was getting worse and trying to avoid emergency surgery.

So we decided to just talk with him about fun things you could do with a bag just in case .

Things to do:
Farting
Seeing your food later 
Never getting up during a wii game /movie to have to go
Throwing /pretending to slip and have it get on any one mean.
Watch people freak if they saw some leak on the sidewalk 
Fancy homemade covers - with super hero patterns .
Naming it .
How he could still swim and what type of suit he would use .
Showed him pictures of what they look like .

He was only 9 but ....
He still has prolapse which still get really bad when he flares and is the last to heal .
So may be a future conversation but for now fingers crossed.


----------



## SupportiveMom

I thought I was missing something because I didn't think he had one and thought i missed a big part of your story. Our doc at SickKids said Jessica is amazing to speak to & has been a great motivation and spirit lifter for many. http://uncoverostomy.org/ is her page. I am trying to show her others that handle it well in hopes it keeps her positive. Some of Sara's videos have spoken negatively about her ostomy experience but I think it is because how she got the bag, and has had many health issues lately. D follows her & I think some questions have arisen from Sara Ringer's health. I have told D we should document this journey for her that may give someone else some hope. She wasn't ready for that. I think she is nervous about school dances & down the road getting close to a boy and knowing how to share it because unlike IBD itself, it is out in the open in her opinion. She chooses how & where she shared her crohns but I think she thinks of a bag like a scarlet letter that everyone will see.


----------



## Jmrogers4

Google Blake Beckford, he is a male excercise model with a bag, I think there is a female model as well.





Here's the model


----------



## SupportiveMom

Names?


----------



## Maya142

Here's another story: http://www.cbsnews.com/news/for-this-woman-with-crohns-colostomy-bags-are-a-must-have-accessory/


----------



## Jmrogers4

Blake Beckford and Bethany Townsend.  Blake has been doing a ton of shows and awareness in the UK


----------



## SupportiveMom

I found this book from the UK I'm sharing: http://www.salts.co.uk/Files/Files/FlipBooks/SoYouveBeenToldYouNeedAStoma/sources/indexPop.htm


----------



## SupportiveMom

Need some advice. My too smart for her own good teenager found a way to reduce her bathroom trips from 7-9x a day to 3-4x. For 2 days she went on a "saltine cracker diet". All she ate each day was a sleeve of crackers and enough water to take her pills. She finally told me why the change of bathroom visits ( I got hopeful the meds were working) and I lectured her about why she can't do this" diet" because the short term gain would not be worth the long term pain. If I didn't discover this I think she would have continued with this diet. 

I think she listened, as she went to subway with her sister for dinner. ( and as soon as she ate she ended up going 2 x during the meal. Wishful thinking something else was the reason for the sudden decrease in bathroom trips). Now I am paranoid she will try this again. I can't hover around her at every meal and monitor her every move but I am worried. 

Oh year, scopes and surgery consult moved up yesterday afternoon to Wednesday as an inpatient. Told to clear our schedules potentially for next weekend because if they can they will do the surgery too. In for 3 days for sure no matter what. Potentially another long weekend in the hospital. If we are in for the long weekend and Canadian Thanksgiving this will only leave 2 holidays we have avoided being in the hospital during, Christmas & 4th of July. I feel my hair turning more grey by the second.


----------



## lbligh

Poor kid, she must have been feeling desperate. And poor family to spend another long weekend in the hospital.


----------



## Book Diva

Where did you get information about the diet?  Our doctor said that my son could try diet changes but gave little information as he needed pred and 6mp to turn things around.  I am curious about the diet but my other child has celiac so we are already doing this for her.  So many questions?!?  I really feel for all of you out there and send my support and admiration to you all! <3


----------



## SupportiveMom

Most of the diet we have learned through elimination /trial & errror. I have read almost every IBD book and the only one that helped was the gluten free, but for me, not her. That and we eliminated dairy completely which helped. With crohns there is no standard recommendations because the disesse varies so greatly. Seeing a nutritionist helped us.

When in a bad flare we follow the BRAT diet which helps. ( bananas, rice applesauce & toast)


----------



## Maya142

Poor D. She must want to feel better more than anything. Thinking of you both and your family:ghug:.


----------



## kimmidwife

Your poor girl. I can understand though not wanting to run to the bathroom all the time. It is so hard for our babies. Good luck with the scopes and everything. Will be waiting to hear how it goes.


----------



## SupportiveMom

My mom is right, teenage girls are hard to raise! D ate yesterday, but very little (it was Yom Kippur where all jews are supposed to fast for 24 hrs) even though she was exempt from the fast. She threw up last night at services which was a bit embarrassing to her. She said some old lady kept asking her if she was ok and if she wanted her to find me. The old lady thought she vomitted because she had fasted. D was happy not to have to explain she wasn't contagious or needing medical attention that the reason was already assumed. Now I'm working on her diet with her in hopes to get this hickup behind her. I like my teenager much better when she is honest with me than keeping secrets!


----------



## CDJ

I just want to say I hope it goes well for D when she goes to hospital and the surgery too.  Never easy to deal with.  Tell D Josh and I wish her well.

I think with the bathroom visits and diet, it is something that everyone, children and adults may try at some point to avoid going so much.  Maybe not the cracker diet, but similar ones.  I know when Josh was flaring badly in 2013 he limited his diet massivly to avoid eating because he couldn't cope with the constant bathroom visits.


----------



## kimmidwife

Sorry to hear that she went through that last night. It certainly is embarrassing. I remember when Caitlyn was first diagnosed and she finally got back to school. Within an hour of arriving she vomited all over the hallway. She was mortified. Luckily her classmates and teacher were all very supportive.
Sending her lots of hugs and tell her it happens to the best of us.


----------



## SupportiveMom

I just wiped all my calendar for the next week. D skipped school today & went to her elementary/middle school to hang out. I think she needed to be with people that have been with her in this journey. Think she is really getting scared. I know they will take good care of her there (principal is a friend of mine too). I hate the head space she is in. Gawd it is so hard to read a teenager's emotions some times it is so up & down!


----------



## Clash

In the US, the children's hospitals usually have Child Life Specialists. The one at C's hospital has CD and was really wonderful as a sounding board for a teen.  She was really great and comes by each time he's been admitted. Maybe there is something similar in Canada?


----------



## SupportiveMom

I will ask. It is a good idea. D has no issues talking about everything but what she does is talk about her crohns in the 3rd person like it is happening to someone else like she is talking about a TV character. It isn't until you dig in deep with her that she shares all the emotion. Maybe having a sounding board for her would help.


----------



## Nadine

Hi everyone!  I hope I'm still welcome here although my daughter will only be a teen for one more week!  She is 19 years old and just diagnosed today with Crohn's, chronic active ileitis (?) and reflux esophagitis. We live in NJ and she is a sophomore at USC in Los Angeles. It is very difficult with her being so far away. Thanks for the support!

Nadine
Mahwah, NJ

and 

Jessie
Los Angeles, CA


----------



## my little penguin

A lot of parents here of older "kids" ( early 20's)
Welcome
Sorry you had to find us but glad you did .


----------



## SupportiveMom

Of course you are welcome! MLP is right there are a few parents of university age kids here too. Maybe you can help us with some of us with the younger grouping!

Sorry to hear about your daughter. Being that far away is tough too. How did you manage the diagnosis being so far away? How is she handling it being far away?


----------



## Maya142

Hi and welcome!
There are a number of us with older teens and young adults. 

Is your daughter back at college? My older daughter had to withdraw for a semester during her freshmen to get her health under control. It was very difficult until she withdrew and she wasn't even so far away from home. Being registered with the Office of Disabilities helped immensely. They were very good about being accommodating - getting her a notetaker for the days she missed class, taking exams separately, extra absences, changing her schedule so she didn't have class in the morning (she is in more pain in the morning) and just helping her advocate for herself, since she was a freshman and very new to college.


----------



## Nadine

@SupportiveMom and @Maya142....thanks for the welcome!  Yes, she is back at school at USC.  She started experiencing some symptoms in the summer when she was home but she attributed it to the antibiotics that she was put on for suspected Lyme disease (which was ruled out).  It got really bad when she went back to school at the end of July (she is a Resident Assistant this year and had three weeks of training before school started).  It was a stressful time with training from 9am - 9pm M-F and she was also dealing with trying to make up the work from three incompletes that she had to take from the Spring semester due to the chronic headaches she was dealing with then (see my intro in Your Story for more background).  She went to the health center at school at the beginning of September.  The doctor did some blood work and took a stool sample and referred her to a gastro doctor at USC Medical Center but she couldn't get an appointment until the end of October so I brought her home to NJ on September 24, she had a colonoscopy and endoscopy on October 3rd (at which time the doctor said she had esophagitis and that he was 99% sure she had Crohn's but would have the results of the biopsies today), flew back to California on Sunday (two days ago) and we got the diagnosis today.


----------



## SupportiveMom

Nadine how are her symptoms? Are the new meds helping at all yet?


----------



## Nadine

@Supportive Mom....I think it's too early to tell yet.  She started two of the prescription meds on Saturday and the third yesterday and is starting the Nexium today.  She still feels very weak and it's difficult for her to eat but she knows that she has to. I'm hoping that the meds start working quickly. I'm going to try to meet with the gastro here in NJ today (and then I will decide if he is someone that we can work with or if we need to look for another doctor here or in California).  I also found a local support group from the CCFA that meets once a month at a hospital about 10 minutes from my house and they are meeting tonight...perfect timing!


----------



## Jmrogers4

Welcome Nadine,
Sorry you have had to find us.  Just a suggestion on the eating issue if she is finding it really difficult, she might try Ensure or Boost that way you both can be assured she is getting her nutritional requirements.
Glad you were able to find a support group quickly and get to a meeting.  It is all so overwhelming in the beginning.
Hope the meds work quickly and she is feeling better soon.


----------



## Nadine

@Jmrogers4 Thank you!  Unfortunately (or fortunately) she ended up in the hospital yesterday and will be there til probably Monday or Tuesday.  I am flying out early tomorrow morning to be with her.  She was dehydrated and anemic.  They are doing more tests and will tweak her meds and now she has doctors in California so that is good.  And she met with a dietician today too.


----------



## SupportiveMom

Sorry to hear that Nadine. I hope she is out quickly


----------



## Book Diva

Good luck in California!  We wish you the best if luck!


----------



## Nadine

Thank you everyone!  I will keep you all posted.  Got to go do laundry now...I have no clean clothes to take to California - lol!


----------



## my little penguin

That's what they make Wally World for  
Have a safe trip


----------



## Giovanni's Mom

Daltonsmom said:


> Thanks---it has been a tough year.  Despite his remicade, he continues to have symptoms and may possibly need to move to Humira soon.  I am not looking forward to the switch, hoping we can hold on to remicade a little longer.  He has started to develop antibodies, and the GI said it is unclear how much longer remicade will work for him.
> 
> I hate to see him in pain.  If I could trade places with him and take this all away, I would do it in a heartbeat.
> 
> Thanks for welcoming us to the forum, I am sorry we have to be here....but it is awesome that we are not alone


i wish I could trade places with my Son too.


----------



## Nadine

I just posted this update on Jessie on my "Your Story" thread but wanted to update here as well and thank everyone in this group for all of your support!

Nadine

So Jessie is back at school at USC and I am back home in NJ. She was in the hospital at Cedars Sinai in LA for 6 days and was discharged on Monday the 13th (her 20th birthday!). She was treated by Dr. Eric Vasiliauskas and the IBD team and I can't say enough wonderful things about them. Jessie and I both feel very fortunate that Dr. V and his team will be taking care of her now. She was dehydrated and anemic and so they gave her IV fluids, IV Iron and also started her on IV prednisone. We decided on Remicade and azathioprine (still waiting for the genetic testing for the azathioprine) and she had her first Remicade infusion the day before she was discharged. She is on an oral prednisone taper and will see Dr. V again on Oct. 28th for a follow-up and her second Remicade infusion. She feels like a new person! She is eating, no more diarrhea, and says she has more energy than she has had in months.


----------



## Book Diva

So happy to hear your excellent news!  I bet she does feel like a new person


----------



## krmom15

Hi I am new to this grou[ so not sure if I am doing this right .  I have a 10 year old daughter with possible crohn's and ulcers.  She is been having severe constipation since she was a baby (now 10) and has an anal fissure and belly pain, reflux and vomiting not helped with meds. She has a positive blood test for saccharomyces cerevisiae ab asca IGG and we have a strong family history of UC, crohn's celiac and other autoimmune conditions.  Unfortuantely we have to wait several weeks to see the Dr.. I was wondering if it is possible to have crohn's when constipation seems to be more of the issue?  She rarely has diarrhea but has very large bowel movements even on daily miralax.  
She also has very bad reflux and some vomiting and is on her second reflux med with little relief. 

Thank you!!!

Krmom


----------



## Jmrogers4

You will actually find quite a few kids that present with constipation, my son included, especially it seems if there is small bowel involvement.  My son was dx'd at 10 and is now 15 and diarrhea has never been an issue except when he has had c-diff.  
We also had reflux issues that have been resolved since finding the right medicines.  Good luck hope you get into the Doc. soon and get answers


----------



## foggymom

Hi krmom15.  My son is 13 and was diagnosed w/ Crohn's 8 months ago.  He doesn't really have either constipation or diarrhea.  Bowel movements are pretty normal.  He has had anal fissures and an anal skin tag that inflamed but mostly bad belly pain, nausea and occasional vomiting, and severe fatigue.  I'm sorry your daughter is sick and you are going through the process of trying to figure out what is going on.  I know how hard that is.


----------



## Maya142

Yes, my daughter initially had constipation not diarrhea. It seems like a lot of kids present that way.
We had issues with reflux and it really took a combination of meds until it was controlled. She currently take Prevacid and famotidine and has been on Prilosec, Zantac and Carafate (I'm definitely forgetting some). I hope you can get in to see a doctor soon!


----------



## my little penguin

DS is constipation with only a rare D after dx .


----------



## Mehita

Puberty is here. With it, the lovely acne. What do your teens do or use to help with acne? Clearasil isn't cutting it and he's starting to become very self conscious about his face. He wipes down his face every night with a cleansing cloth and is currently experimenting with tea tree oil. We avoid any lotions with oatmeal due to Celiac. Sometimes he reacts, sometimes not, so he just avoids them. Any suggestions?

Also, it seems like the individual pimples go from tiny in the morning to super  sized by evening. Would this have anything to do with Remicade and how it suppresses the immune system slightly?


----------



## Book Diva

My son has also struggled with acne but it was brought on by 5 months of pred while we were waiting for 6mp to kick in.  He tried many over the counter lotions.  The best to date is washing with Cetaphyl (GF) and in the morning he is using the prescription benza clin (sp?). He also used a low dose of retin a (tretinoin.025) at night.  We tried everything over the counter so decided to go to a dermatologist as he was very worried about his appearance.  The combination is working great!  The derm said the banza clin was best as it has two meds in one to fight acne.  It is expensive tho!!!  Hope our experience helps!!  Best of luck<3


----------



## crohnsinct

Oh Mehita!  We have done it all for my older daughter non IBDer with Cystic Acne.  She once had luck with Proactive but then got super sensitive so can't use anything with salicylic acid or benzoyl peroxide.  

Cetaphil is good as was Noxema.  She has used EVERY natural line out there.  Some work for a bit but then the skin gets used to it so we have to switch around a lot.  We had excellent luck with Alloette (got the recommendation from Tesscorm) ...an aloe based product sold online.  Her and her collage room mates call it the miracle acne stuff.  Shipping is expensive but so are derm visits and drugs so.....

Some people swear by coconut oil applied to the face.  

My older daughter does notice a huge difference when she isn't drinking enough water so maybe up the water.  Especially going in to winter...the kids just don't remember to drink enough.


----------



## crohnsinct

I know Catherine has fought acne with one of her girls and at one time she had said something about vitamin D playing a part and potentially helping.  Maybe have his levels checked at next infusion and see if upping the d doesn't help.  I do remember though it got worse before it got better...which btw is the way of many acne treatments. So don't abandon them too quickly.


----------



## DanceMom

Tea tree oil and coconut oil??  Tell me more!!  I have both at home, and though I'm in my 30s I still have an oily complexion with pimples.


----------



## crohnsinct

haha..well here is a site my daughter uses and I ran coconut oil by the derm and she is a fan.  It helped my daughter a bit but she was too anxious for results to stick it out.  Coconut oil is supposed to be good for aging skin also.  Worth a try.  Certainly cheaper than all the cosmetic products and smells yummy to! 

http://www.acneskinsite.com/acne-tips/coconut-oil-acne/


----------



## Maya142

We used a green tea face wash (St Ives I think?). Also Neutrogena stuff (but only if he doesn't have sensitive skin since it has benzoyl peroxide). My daughter saw a derm for a separate issue who told her that she absolutely had to use moisturizer with sunscreen while using these products because they really dry out your skin.

We have had those super sized pimples (I swear they grow before your eyes) but it was before she was on biologics.


----------



## Mehita

Well, the tea tree oil is working wonders! All we do is put a drop of oil on a cotton swab and dab it on whiteheads once in the AM and once before bed. I think we might drop down to just at night because it's drying out his skin a little.

There are a lot of essential oil/acne posts on Pinterest.

Today he put coconut oil on his face and a half hour later all the angry looking red bumps had improved visibly. I was shocked. Is it supposed to work that quickly??


----------



## Farmwife

Ok, the coconut oil treatment, do you just use plan coconut oil or something else mixed in with it?


----------



## DanceMom

I tried the coconut oil the other night after using a Neutrogena make-up wipe to remove my make-up.  I wet my hands with warm water then got a glob and applied, really rubbing it in good.  I let it sit for about 10 minutes, then wiped good with a warm cloth.  My face was unbelievably soft!  Not sure it helped my red complexion just yet but it felt good.  Will try again tonight!  I'll give a few days before trying the tea tree oil so I know which one is giving the best results.  I'm too old to have pimples! lol


----------



## crohnsinct

I wash my face with my regular chemical laden stuff then use the coconut oil as a moisturizer.  Right out of the jar.  My niece was over for three days at Thanksgiving. She had horrible bleeding dry hands.  I kept applying coconut oil and she went home with beautiful clear skin.  

I like the smell.  Makes me feel like I am on a tropical vacation! 

Coconut oil mentioned twice this week...good for weight gain also...don't get me started on the anti inflammatory properties.


----------



## Mehita

Farmwife said:


> Ok, the coconut oil treatment, do you just use plan coconut oil or something else mixed in with it?


We aren't mixing anything with it. Just grabbing a bit from the jar, rubbing in out hands to liquify it, and applying it to his face. Heck, we're not even wiping it off because it's so dry here now that it's winter. I'm starting to use it too and liking it way better than the expensive crap I've been buying. I'm seriously impressed.

I do think, as with most everything, there are different levels of quality. We use organic and fractionated coconut oil.


----------



## feelsgreat

Hi ! my name is Brian  from Indiana, my son was diagnosed with crohn's 2yrs ago, he was put on a cortical steroid and azathioprine, he was 10yrs. old at the time, every since he has done great, no flares, cramping, diarrhea of any kind. he was being treated at Riley Hospital for children in Indianapolis.
All of the sudden just because some inflammation markers were slightly elevated they were talking about remicade, and remember he's still not have any pains, bad stools ect.. Then I looked into what remicade was and what it supposed to  treat within the IBD arena. I couldn't believe they were actually talking about this for my son.
His symptoms to this day or lack thereof still does not warrant this more aggressive type of treatment. So we got the heck outta there.
So we got a referral to a new GI, so he wanted to do an MRE which we did and Doc said if it looked good, no colonoscopy, well it looked great but still insisted on a colonoscopy,(lie #1) so reluctantly I said yes since it had been two yrs. before his last one with the other doc. as we still sat in his office discussing the procedure we made mention of the fact we are not interested this remicade treatment, he said oh!! your son would not have to do that , he would have to be having flares pains and I would have to find scarring or abscesses or other abnormalities in the colon.(lie#2) visually the colonoscopy and endoscopy looked beautiful nothing abnormal, but he said the biopsies did show the little signs of inflammation going throughout the colon, he couldn't even tell me the degree of that inflammation, so because of that, It's got to be remicade, remember my son do this day has no symptoms at all, he is growing well, eats what he wants, but we are going try and change to a crohn's diet as best we can.
What are my options here? I will not allow my son to be on this remicade at this stage, so me and the wife are going to look elsewhere, is there anybody out there with this frustration and what is your advice.
Thanks so much!!


----------



## Clash

Yes, the meds can be scary but under controlled or uncontrolled CD can be even scarier.The risks with remicade are the same as the risk of azathioprine as far as the scary risks. Also, the risk of combo therapy doesn't mean when AZA and a biologic are taken together, it is if you have once taken one and then the other as well. So for anyone that has been on aza, 6mp or mtx then later on have to move to remicade then the risk for HCTSL is there.Newer studies have shown the risk to be associated with either med yet with starting remicade shortly after diagnosis the risk of surgery seems to be lower.

The treatment goal for CD is full mucosal healing. Since kids tend to have more progressive/aggressive disease there are a lot of kids who are moved quickly to remicade. 


We have a diet section on the forum you may want to browse through. I think there may be a few parents that are trailing diet or have trailed different diets. 

I hope your son soon finds remission!

Edit to add: My son has been asymptomatic with his CD for the last year. No GI symptoms at all. He has been growing vertically but his weight, no matter how much he eats stays about the same. He recently required surgery even though he's been on the big guns.There are a lot of kids here that have no symptoms with their CD. A lot of kids with no symptoms and simmering inflammation move up their current dosage or discuss other meds.


----------



## Mehita

Can you ask for copies of your son's records from both places, feelsgreat? Since both GI's have said something, I wonder if they're seeing something and it's getting lost in translation. I'm not saying there is something going on, but it would be good to have his records anyway. How have his labs been? What dose of Aza is he on?

The only thing that's niggling at the back of my mind is maybe the microscopic inflammation is triggering their concern, as well it should be. If you poke around the forum here you'll read all sorts of stories of kids with perfect labs and no symptoms, but have low simmering disease. The problem with simmering disease is it can build scar tissue and cause strictures. Not fun.

Even if there is mild disease activity, I'd think they'd want to play around with the Aza levels before changing meds. Just my two cents.


----------



## xeridea

feelsgreat said:


> Hi ! my name is Brian  from Indiana, my son was diagnosed with crohn's 2yrs ago...


Hi feelsgreat, what issues was your son having initially that you took him in and ended up with the CD dx? If the latest biopsies show inflammation then the GI probably has good cause to think the disease is not under control. 

As others have said, Crohn's may be asymptomatic, but if pathology shows inflammation and the labs show elevated markers, then maybe the disease is active. Also consider that the low-grade inflammation, especially if it starts showing up in the lab reports, has some systemic implications. The inflammatory process signals and activates various agents that circulate throughout the body and their action may not limited to the GI tract.

I think you are doing the right thing question your GI. It's a necessary component of becoming informed. Think about what makes sense to reduce the chances of ongoing damaging inflammation in the gut tissue, which is what leads to so many of the complications you hear about with this disease.

There's a lot of brilliant research going on, and we may see a breakthrough in understanding the disease, as well as safer and more novel therapies, in the next few years. Good luck with your decision.


----------



## crohnsinct

Asymptomatic makes all these decisions so much harder.  

I agree with Mehita in that there must be other options both docs considered before suggesting Remicade.  As a patient, I would want to hear those options and why they feel they aren't good.  I would also want a full explanation of what they are seeing and why the jump to Remicade.  

At one point, my daughter's doc suggested adding a med to her Remicade because Remi wasn't quite getting her to full remission.  EEN has been shown to be just as effective at Steroids if not more because you have the added benefit of mucosal healing.  We chose to add Exclusive Enteral Nutrition.  It was 6 weeks of liquid diet.  The liquid is a formula.  No food!  Water and formula only.  Some kids drink the shakes others choose am ng tube if they need the less palatable formulas.  EEN worked to get my daughter to remission where she has stayed for 2 1/2 years.  Perhaps adding EEN can help put out that simmering inflammation?  Worth asking about. 

All this said, I think docs suggest Remicade because it has a great success record.  Further with kids there is a set window of opportunity for growth and simmering inflammation will interfere with that.  Also, if there is simmering inflammation with no signs some docs feel it is even more important to attack it with the med with the best chance at dealing with it.  

I agree with Clash that the risk profile is not that different.  

Good luck with your decision.  Make the doc(s) explain to you until you are comfortable with making a decision.  They sometimes forget that they have seen this hundreds of times but it is our first time so they have to take it a little slower!

P.S.  about a year after EEN we made some diet modifications for my daughter and her health took off.  We use an anti inflammatory diet.  I think that while the meds were getting most of the inflammation there must have been a very little bit left and the diet took care of that.  We have backed off from time to time and definitely notice a difference when we do.


----------



## my little penguin

My son has minimal inflammation but inflammation is still ongoing inflammation and leads to scar tissue ( resection surgery ) strictures fistulas etc...
Just because the symptoms are the outside look pretty -does not mean stuff isn't going on inside and causing damage.
Biologics are being used earlier in the disesase to reduce the risk of surgery and increase the probability of long term remission & mucosal healing .

I realized you see remicade as all risk no benefit but honestly 
Most gi are moving towards top down approach to change the natural history of crohns in kids .

Ds was placed on remicade at age 8
He didn't have a lot of inflammation but it was still in multiple places despite 6-mp and later Mtx.

He scopes after biologics showed not damage or inflammation.
If it saves more of his small bowel for later I am all for it.
Since once you cut the odds of surgery again are good.
You can live without a large intestine and have a bag
But you can not live without a small bowel .

Add in a doctor can not predict how tests are going to come out for any disease so you need to work with the test results after they are known .


----------



## Book Diva

Dear Crohnsinct,

Where did you learn about the anti inflammatory diet?  I'd like to try it with my 15 year old son.  Currently he uses 6mp.  Off the pred now for 2 1/2 months and no symptom return.  Waiting for next lab set.  Did you use a specific book or program?  Thanks for any tips!!!

This is certainly a journey!!


----------



## crohnsinct

There is a lot of information  out there on anti inflammatory diets as most diseases start because of inflammation somewhere in the body.  However, I used Clean Cuisine (an 8 week anti inflammatory diet) written by Ivy and Dr. Andy Larson.  They also have a website and facebook page.  They are wonderful and encouraging people and take time to personally respond to questions about the diet etc. She has MS and has been able to control it in large part through diet.  Her neurologist suggested this way of eating.

O's doc was adamant that diet wouldn't make a difference but now he can totally tell when she is off her diet.  Nothing really bad happens but I imagine some values move a little and he calls us out on it.  He does think that diet combined with meds makes for a great treatment and says that researchers are working on identifying types of Crohns and being able to customize diets for each type.  

It takes a lot of patience and persistence but it is worth it when you see the payoff.


----------



## feelsgreat

Thank you all who have responded to me, it has helped us a lot in our decision, it has been an agonizing process for me and my family as I'm sure it has bee for all of yours but I guess I still want to know why my son's GI has not discussed any other options other than remicade right off the bat, I guess that's something we will to have address with the GI.
We have been trying to educate ourselves more and more about this disease, I think we have just been in denial about all this since he has been asymptomatic for so long.
This forum has been great in educating us with this disease and we've only been on 1 day.

I guess another big question I would have, is there any financial programs or assistance out there that can help us, as you know remicade is so darn expensive even after insurance, we have fears that this could cripple us financially, if so please let us know.

Again thank you all for your support and experience with this.


----------



## Jmrogers4

Remicade has an assistance program called Remistart and it pays for co-pays for infusion up to $8000 for the first year and you can request extensions.  
My son has been on remicade for a year in January and I have not even had to use my remistart card as the cost of the remicade has been covered by our insurance.
I was in the same boat as you and my asymptomatic son went nearly 4 years with simmering inflammation before we finally started remicade.  In my son's words I didn't realize that I didn't feel 100% until now when I feel 100%.  It's easy to see now that all these little things that we just always attributed to puberty/being a teenage and it was nothing big are gone and it's only in hindsight that the Aha! moments have hit because all those little minor things become part of the normal.
Best of luck, it's not an easy decision by any means and we still (GI and myself) shake our heads and say I guess we made the right decision and he really did need remicade based on his current state.


----------



## xeridea

I think a lot of pediatric GI try to take into consideration what the best option is to give your child as close to a normal life as possible while still effectively managing the disease. I'm sure if you talk to your GI he would agree that EEN is effective, but may question whether it's practical enough to adhere to long term for a pre-teen. Conformance is hard.

Remistart, http://www.remistart.com/, can help with offsetting the cost of the drug but not the infusion facility charges.


----------



## crohnsinct

Also, with Remicade and Crohns in general, you tend to max out on your deductible pretty fast.  Our first level is %400 then we pay 10% our out f pocket max is $3,000 and after that 100% is covered.  We have been on the Remistart and Remistart extended access for2 years now and they have just approved my daughter for a third year.  The program is not income based at all.  You pay the first $50 for the actual drug and they cover the rest.  The administration charges (nurses and supplies) are not covered but those are pretty low compared to the cost of the med.  

Remicade has been wonderful for my daughter.  She actually has forgotten she has Crohns.  She just remembers once every 6 weeks when she has to go for infusions or on doc appointment days.  Otherwise, it has totally given her, her life back.  She is bouncing along happily like every other teen. Well o.k. she did get psoriasis from the Remi but she is handling that fine as well. 

I would still want to hear all the other options and want to discuss EEN with the docs and hear their reasoning behind why they think those options won't work.  The patient/doctor relationship is a partnership not a dictatorship.  You have to be a part of the decision or at least feel like you had a say. 

It is true that EEN is hard but when we negotiated EEN for our daughter our doc had to agree it was the better option (as opposed to adding MTX to the Remi).  He stated non compliance as a big factor.  So we decided to give the EEN a try and if she couldn't do it then would fall back on MTX.  You never know until you try.    When we approached it with our daughter we just asked her to try one shake.  Then one day, then another...before you know it we were three days in and she really felt she could do it.  We tried not to focus on the 6 weeks part upfront but rather take small steps.  

Good luck!  Keep us posted.


----------



## Maya142

Did your doctor mention Methotrexate (just by itself in place of the Azathiprine)? Some kids do better on MTX vs Imuran and vice-versa.

That said, both my daughters have been on biologics for years and I haven't regretted it even for a single second. Both girls liked Remicade better than Humira because though the infusions are kind of inconvenient, both girls liked the chance to relax and watch tv and miss school! Neither has had any sort of side effects from Remicade - they just tend to be tired the day after the infusion.

There's a great presentation on this site: http://programs.rmei.com/CCFA139VL/
that explains the risks and benefits of various IBD treatments. The risk for Remicade (like others said) is really not that great. And for some kids, it really is truly miraculous.
Definitely talk to your doctor about all the options. I think EEN is great idea if you can get your kid to do it (my daughter is 17 and completely refused).
Good luck!


----------



## my little penguin

Same here it's actually cheaper for drugs once they are on biologics since there are programs like remistart /myhumira you pay the copay but... It still counts towards your deductible.
It's covered under medical procedures not prescription plan .


----------



## feelsgreat

Jmrogers4 said:


> Remicade has an assistance program called Remistart and it pays for co-pays for infusion up to $8000 for the first year and you can request extensions.
> My son has been on remicade for a year in January and I have not even had to use my remistart card as the cost of the remicade has been covered by our insurance.
> I was in the same boat as you and my asymptomatic son went nearly 4 years with simmering inflammation before we finally started remicade.  In my son's words I didn't realize that I didn't feel 100% until now when I feel 100%.  It's easy to see now that all these little things that we just always attributed to puberty/being a teenage and it was nothing big are gone and it's only in hindsight that the Aha! moments have hit because all those little minor things become part of the normal.
> Best of luck, it's not an easy decision by any means and we still (GI and myself) shake our heads and say I guess we made the right decision and he really did need remicade based on his current state.


thank you so much for your reply, this has been a very traumatic situation for our family, we are just coming into an understanding of this disease, we thought we knew more than we did until we joined this forum, I have to admit my wife and I have been so against all these chemicals, but when your faced with a situation like this, when we know our son is not doing as well as he should be what do you do, his future is what is important.
We do have the paperwork for remistart and we will fill it out and get started on it.
Again thank you so much for your reply


----------



## feelsgreat

Maya142 said:


> Did your doctor mention Methotrexate (just by itself in place of the Azathiprine)? Some kids do better on MTX vs Imuran and vice-versa.
> 
> That said, both my daughters have been on biologics for years and I haven't regretted it even for a single second. Both girls liked Remicade better than Humira because though the infusions are kind of inconvenient, both girls liked the chance to relax and watch tv and miss school! Neither has had any sort of side effects from Remicade - they just tend to be tired the day after the infusion.
> 
> There's a great presentation on this site: http://programs.rmei.com/CCFA139VL/
> that explains the risks and benefits of various IBD treatments. The risk for Remicade (like others said) is really not that great. And for some kids, it really is truly miraculous.
> Definitely talk to your doctor about all the options. I think EEN is great idea if you can get your kid to do it (my daughter is 17 and completely refused).
> Good luck!


thank your for your reply, it has been a very difficult time trying to decide what to do, my son is not a big fan of this choice, but it has to be made, I think we will go with the remi, our son was upset about the decision, but that is our fault as we have always been against these chemicals being put into our bodies, but he is a child , he cant make that decision, we do, what do I do, I have to look out for his future and the potential complications that we could reduce by doing this now.
Again Thank you!!


----------



## feelsgreat

xeridea said:


> Hi feelsgreat, what issues was your son having initially that you took him in and ended up with the CD dx? If the latest biopsies show inflammation then the GI probably has good cause to think the disease is not under control.
> 
> As others have said, Crohn's may be asymptomatic, but if pathology shows inflammation and the labs show elevated markers, then maybe the disease is active. Also consider that the low-grade inflammation, especially if it starts showing up in the lab reports, has some systemic implications. The inflammatory process signals and activates various agents that circulate throughout the body and their action may not limited to the GI tract.
> 
> I think you are doing the right thing question your GI. It's a necessary component of becoming informed. Think about what makes sense to reduce the chances of ongoing damaging inflammation in the gut tissue, which is what leads to so many of the complications you hear about with this disease.
> 
> There's a lot of brilliant research going on, and we may see a breakthrough in understanding the disease, as well as safer and more novel therapies, in the next few years. Good luck with your decision.


2 yrs ago my son was diagnosed with  a parasitic infection called giardia, it is a parasite that infects the intestinal tract, it is known to come from infected water such as shallow water wells in rural areas caused from fecal contamination from a variety of animals due to it's lack of depth, now we live in a rural area but our well is a drilled well and is about 125' deep, safe from contamination, but our neighbor who lives in a trailer with a very shallow well has 2 kids, who were not all that clean, we have always wondered if that is were this all started, our son has not been the same since, even though with antibiotics the giardia parasite was killed off, he has continued to exhibit the symptoms of crohn's , we have always questioned whether is this just some lasting affect of the giardia, or did this traumatic episode trigger the CD diagnosis. 
Thank you for your reply!!


----------



## crohnsinct

We have all been there.  I used to joke that after they propose these drugs and we freak the GI's probably take bets on how long it will take us to say yes...or if they throw down the challenge...send me in, I'll get them to cave!  

Whatever you decide I hope the next step is your son's magic bullet and that you don't have to make any decisions for a long, long time!


----------



## feelsgreat

Maya142 said:


> Did your doctor mention Methotrexate (just by itself in place of the Azathiprine)? Some kids do better on MTX vs Imuran and vice-versa.
> 
> That said, both my daughters have been on biologics for years and I haven't regretted it even for a single second. Both girls liked Remicade better than Humira because though the infusions are kind of inconvenient, both girls liked the chance to relax and watch tv and miss school! Neither has had any sort of side effects from Remicade - they just tend to be tired the day after the infusion.
> 
> There's a great presentation on this site: http://programs.rmei.com/CCFA139VL/
> that explains the risks and benefits of various IBD treatments. The risk for Remicade (like others said) is really not that great. And for some kids, it really is truly miraculous.
> Definitely talk to your doctor about all the options. I think EEN is great idea if you can get your kid to do it (my daughter is 17 and completely refused).
> Good luck!


thank you for your reply, and for the (FYI) on the site for remicade, it has been very difficult for our family on this decision, I am so grateful that your children are doing great with this treatment, until we discovered this forum, we thought we new everything about what we need to do about this disease, we have probably learned more from this forum than we could from our Doc.

Again Thank You so much for your feedback!!


----------



## feelsgreat

crohnsinct said:


> We have all been there.  I used to joke that after they propose these drugs and we freak the GI's probably take bets on how long it will take us to say yes...or if they throw down the challenge...send me in, I'll get them to cave!
> 
> Whatever you decide I hope the next step is your son's magic bullet and that you don't have to make any decisions for a long, long time!


LOVE your response!!, made me laugh!! which has been hard to do lately, I have always said that these doc's hold us hostage, giving us this ultimatum, it's this way or the highway, they ware you down until you just give in, but at the end of the day I have look out for my son, after all it is still his future we are trying to protect, always, always, always do your best to keep informed.


----------



## feelsgreat

Mehita said:


> Can you ask for copies of your son's records from both places, feelsgreat? Since both GI's have said something, I wonder if they're seeing something and it's getting lost in translation. I'm not saying there is something going on, but it would be good to have his records anyway. How have his labs been? What dose of Aza is he on?
> 
> The only thing that's niggling at the back of my mind is maybe the microscopic inflammation is triggering their concern, as well it should be. If you poke around the forum here you'll read all sorts of stories of kids with perfect labs and no symptoms, but have low simmering disease. The problem with simmering disease is it can build scar tissue and cause strictures. Not fun.
> 
> Even if there is mild disease activity, I'd think they'd want to play around with the Aza levels before changing meds. Just my two cents.


Thank you for your response, sorry took so long to respond, my sons aza dose is at 100 mg, the max for his weight, and there is still this smoldering inflammation going on, he is 12 yrs of age and weigh's about 74 lbs, he growing upwards, but not in weight, and I think your right, it is this smoldering inflammation that is present, even though he is asymptomatic that is concern.
Than you for your response!!


----------



## Marni's mom

Hi everyone!  Looks like I'm late to this party!  I've been away from the site for almost two years, and while i was gone, my daughter became a pre teen!  Lol.  Now I see Lori started a group for that lovely age braket.  I used to read posts from parents who described their kids' lack of compiliance and think to myself that Marni would never act that way about taking her meds or treatments.  Ha!  We're sure there now!  I also started a forum for teens and pre teens with IBD on Facebook so the kids could connect and vent/share.  It's brand new, maybe a week old, so just getting started.  Let me know if your kids have Facebooks and I'll post the link to the page/group.  It's private.  I'd love for Marni to be able to correspond with other kids her age about IBD in addition to her camp Oasis pals.


----------



## kimmidwife

Marni's Mom,
Welcome back!


----------



## CarolinAlaska

Hi.  I'm jumping in late too. Would like to be a part of this group.


----------



## Book Diva

Great idea!  Please post the FB link.

Welcome carolinAlaska!


----------



## CarolinAlaska

I am sure J would like the link also, Marni's Mom


----------



## SAHM

Lori1973 said:


> Thank you Julia...our son is 14 years old with delayed puberty, so we are definately looking for any ideas to continue progress.  Last week we had scans, swabs and labs done to determine why our son was so tired for about two months...Is it Crohn's related or puberty? Still waiting on results.  Will share any info that I receive from our experiences as well as looking forward to any of the info on here to help us!!!


My son has delayed puberty as well... yet that runs in our family...but perhaps that is Crohn's related - although no one in my family before him and then me, has been diagnosed with Crohn's.  We see a Endocrinologist next month to determine if he needs to go on hormones.


----------



## SAHM

crohnsinct said:


> We have all been there.  I used to joke that after they propose these drugs and we freak the GI's probably take bets on how long it will take us to say yes...or if they throw down the challenge...send me in, I'll get them to cave!
> 
> Whatever you decide I hope the next step is your son's magic bullet and that you don't have to make any decisions for a long, long time!


lol! I was thinking the same thing!  My doc thinks food has nothing to do with it...at all.  Kind of frustrating, but I like her otherwise...


----------



## SupportiveMom

Here is a strange one... My daughter has been dating. She is now dating her 2nd boy, with her 1st relationship lasting about 4 months. A pattern I noticed is both of these boys have someone in their lives with Crohn's. Her current boyfriend's mom has it, and her last boyrfriend's aunt did. Anyone have this come up? 

I guess it is good the boys would know a little about the disease already.


----------



## Farmwife

Maybe your girl feels comforted or attracted by the fact that the boy(s) might be a little more understanding about the disease since they have a loved one with it.
That's as far as I can guess.
 Grace won't be dating until she's 30 according to get dad. :lol:


----------



## SupportiveMom

Yea D's dad tried that. You can see how that worked out. Lol


----------



## Tesscorm

Likely to just be a coincidence... given the high per capita rate of crohns in Toronto.  Once S was diagnosed with crohns, suddenly we began to hear of tons of people we knew who had crohns.  Not including three extended family members with crohns/UC, we became aware of eight or nine others (all related in some way to close friends - sister, grandfather, roommate, teammate, etc.)

But, I do think it probably gives her some comfort that they are aware of the illness.


----------



## lenny

What are the odds that Remicade will work?  And for how long??


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## crohnsinct

Loads of studies stating the effectiveness.  I can't recall what percentage they all hover around and quite honestly depending on when the study was done the percentage changes but it worked here and for three yeas and running!


----------



## SAHM

That sounds great!  Exactly what I am finding...





crohnsinct said:


> There is a lot of information  out there on anti inflammatory diets as most diseases start because of inflammation somewhere in the body.  However, I used Clean Cuisine (an 8 week anti inflammatory diet) written by Ivy and Dr. Andy Larson.  They also have a website and facebook page.  They are wonderful and encouraging people and take time to personally respond to questions about the diet etc. She has MS and has been able to control it in large part through diet.  Her neurologist suggested this way of eating.
> 
> O's doc was adamant that diet wouldn't make a difference but now he can totally tell when she is off her diet.  Nothing really bad happens but I imagine some values move a little and he calls us out on it.  He does think that diet combined with meds makes for a great treatment and says that researchers are working on identifying types of Crohns and being able to customize diets for each type.
> 
> It takes a lot of patience and persistence but it is worth it when you see the payoff.


----------



## SAHM

I do not know what I am doing with this whole reply thing...there are so many threads!  So I am posting a reply/update about my13 year old with Crohn's.  First of all, YES, I think it makes a difference how old a kid is in how they deal with Crohn's.  My son is so embarrassed by things that it definitely factors into the equation.  His "role" in school, his identity, perse, is wrapped up in being an excellent student...so going to school without enough energy to be that person is off the table at this point in time.  As for exhaustion and figuring out what is normal, and what is Crohn's, I can comment on that.  My middle son is fit as a fiddle and here is what is going on with him:  He stays up too late and then has trouble getting up in the morning.  It seems to be his natural "schedule".  He is totally "out of it" some days...especially in the morning when he is waking up.  When he sleeps in, not being able to get up despite his alarm clock, he usually seems to have grown!  But he can put in a full day, and he can do his schoolwork, and he can exercise without a problem.  Maybe a complaint, but not a problem.  He has been tested and he is in excellent health. 
As for my 13 yr old... We started him on Remicade a week ago.  He gets his next infusion this week.  He just was getting sicker and sicker as we went from Fall to Winter.  No blood in his stool that we saw, just fatigue, cramps, reflux, headaches, etc.  We had his blood tested and his inflammation and Crohn's numbers were up.  So I threw in the towel.  The kid has been SO good about his diet, but either we haven't rid of the one thing that is causing the problem, or who knows what, but we decided it was time to try Remicade.  This has been too much stress for one little boy, and seeing as stress make Crohn's worse, we saw that we were working against ourselves.  I am quite hopeful that Remicade will be the key to his return to good health.  We are continuing on the no corn, no wheat, organic, low carb diet, and other suggestions of the Blood Type Diet System...but we are going to allow in some foods, like some cheese every once in a while, if we can get him feeling well again on the Remicade.


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## Jmrogers4

I hope it works wonders for him SAHM. I have been in those shoes and can only say I'm glad I threw in the towel this last year and just a bit have been a different world.  He is happy, healthy and the energy is there.  Sure he stays up too late on occasion and pays for it the next day but he is not falling asleep in class.  The fatigue is no more than any other teenager.  Growth has been phenomenal (7" since starting remicade Jan. 2014) weight has gone from 4% to 50%.  
I totally get it you get to the point where you just want them to feel better and the big meds don't seem as scary if they will give you your child back.


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## my little penguin

I think it has a good success rate .
On here alone I know only two kids that it didn't work for . 
Otherwise nothing but happy success stories
It worked wonders for DS 
We only switched to Humira after an allergic reaction( DS is allergic to lots of drugs and everything in between)
Since being on biologics SAHM DS has gained 36 lbs and grown  8.5 inches
Granted he is only 11 
He is back at the 70. & 75% for things again


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## CarolinAlaska

SAHM, we will likely be doing the same (going to a biologic), and I have a lot of hope that we'll finally see the same results as so many others.


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## araceli

I hope Remicade works for both of you kids (CarolinAlaska, SAHM). 2 years plus and working wonders for my Daughter.


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## CarolinAlaska

I heard from the GI office today.  Scopes are scheduled for the 18th.


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## SupportiveMom

Glad you are getting a scope so soon Carol


----------



## Smile Please

Hello everyone! We've been a bit busy these last few months with a new GI for our 12 year old son. The first GI, the one who diagnosed him with Crohns just wasn't as I'm sorry to say smart or informative as the one our son has now........ Even though he is just as young or maybe be even younger then the last doctor he's more understanding, listens, remembers and yes takes our constructive impute with stride (learning as he goes). Unlike his young nurse who is still taking my calm, stern impute as hate rather then help. I can see it she'll come around. I tell her things I discover in hopes she won't tell the next parent the same and find they may not be as friendly as I. 

But after the Yoyo effect of deciding if our son should or should not be on Remicde to bring him to remission. We finally decided and he will be starting as soon as his pre testing comes back. I am scared, my husband (ie. who is Feels Great on here) is too..............for our son, he hasn't said much. Like most things it'll be in the car on our way there or maybe even right when we get there. 

I do wish he knew other kids his age with Crohns in our area but we don't know of any. Also my son is getting infused at an infusion center in our town instead of at his GI's office 1 1/2 hours away. Which is great but they told me even though they do have kids come in they've never had one as young as he is. It's an infusion center in a bone and joint center. It might be fine though? He connects well with older people. He will have his laptop and tablet to keep him busy. Also school work!!!


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## Jmrogers4

Good luck!  Hope it works wonders for him.  It has been a miracle drug for us after we finally made the decision a little over a year ago.
Jack has his done in the GI office but he is in a room by himself and just has his laptop to keep him busy.  It would be nice if he did his homework then but he looks at as if he has to be there doing that then he shouldn't have to do homework.  He looks at it as free time.
We knew of no other kids in our area with Crohn's until he went to Camp Oasis and has met several kids who he keeps in regular contact with.


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## crohnsinct

Good Luck!  Remicade has been great for my daughter.  

She has her infusions at the GI's office with up to two other kids in the room and they rarely talk to each other.  They either have their noses in their books or their phones or head sets on.  I think at the center you describe he will probably be spoiled.  The little prince.  Everyone will think he is adorable and feel bad and dote on him.  Tell him to eat it up while he can!


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## kimmidwife

Good luck! A lot of doctors want the infusions done in the hospital or an infusion center. It is not uncommon. Keep us posted!


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## CarolinAlaska

We will likely be following suit.  We live 2.5 hours from our GI.  I was worried about the logistics.  Hopefully Jaedyn can get her infusions locally and not have to miss any school.


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## my little penguin

Carol regardless of where the infusions are located they take at least 4 hours 
Without travel so school is generally missed infusion day


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## Maya142

Yes, definitely have to miss at least half a day of school, if not the whole day. My girls loved the day off! It was a chance to relax, nap and watch TV! The nurses also really spoil the kids at pediatric infusion centers/hospitals.


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## crohnsinct

O is down to a 2 1/2 hour infusion (they get faster once they get through 6 or so and now her dose has been lowered).  We get the first appointment of the day (7:30 a.m.)  The center is about an hour and a half away.  So I usually get her back to school for a few hours of the day.


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## Farmwife

Grace's first infusion was 6 hours. They were worried about her past history of allergy reaction.
Now she's finishes in 2.5 hours.


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## DanceMom

2.5 hours would be lovely! A's infusions take 5-6 hours (if all goes well). We use that time to watch movies, relax, and play games. She actually doesn't mind it.


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## Jmrogers4

Yep miss a 1/2 day here and it's only 15 minutes away but lunch for him starts at 11:46 and it is just easier to take him from school then and get food on the way.  We like afternoons then he only misses 3 periods instead of 4. 

On another note Jack had a huge project for English due today which he has not been very good about getting things done ahead of time for it.  He stayed up till 1:00am last night to finish and he has had no issues today because of it.  In the past the stress of the project combined with a late night would have caused issues and taken days to recover from.  I'm glad he is healthy enough to be able to pull an extremely late night and not pay for it more than any other teenager. (And he got 235 out of 230 points).


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## SupportiveMom

Fantastic for Jack!


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## Clash

C's infusions took about 2.5 to 3 hours and since we traveled to his GI IV lab he missed the whole day.

Way to Jack, jmrogers4 I know it has to great to see all of these changes.


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## CarolinAlaska

That is great about Jack's paper.


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## CarolinAlaska

High School Struggles:  Is anyone else having them?  Your kids all seem superkids with amazing stories and seem to come through everything shining like some super hero.  We're having a bit more of a struggle when it comes to high school.

Jaedyn has always struggled to keep up with school.  She is a bright girl and catches onto concepts quickly.  Problem is:  she is sick so often she has a hard time keeping up and when she gets behind she starts hating school and stops trying.  She struggles mainly with two aspects of school:  taking notes and writing.  She is a slow writer.  Getting concepts from her brain onto paper takes a long time.  If you ask her the same question she'll tell you orally without any problem.  I will admit, I've been lax on making her do the written stuff, because I know that it would be impossible for her to keep up with it all.  Now she is finishing her freshman year and I here her saying things like, "I don't think I can do ________" because I won't be able to go to college.  She thinks college will be too hard for her.  I don't know how to help her.  I brought her home this semester halfway through the year because she was so miserable.  Granted she did pull off As and Bs last semester at her private school.  However, the stress seemed to be making her crohn's worse and worse.  I'm glad now that she is only doing half-time school at the private school, because she has a colonoscopy coming up, starting Remicade (probably), etc.  That would definitely put her over the edge.

We went last week and took a look at the public high school.  My oldest daughter wants to transfer there for more opportunities for different classes.  Jaedyn is not so sure.  I'm not so sure!  It is so scary to make changes, especially when you don't know what it is like, and when your child's health may or may not be good...  They aren't taking her homeschool class credits this semester (English and Biology) and so she'd probably have to do them over (or take remedial English - which sounds like a bad word to have on your transcript...).  I'm not sure what to do.  I have these options:  1. continue to do what we're doing - half-time homeschool, and half-time private school (I feel her education is lacking in the English department); 2. put her back in the private school full time (very stressful, but supportive staff); 3. try public school, and hope they work with me to find a track that fits her; 4. full-time homeschooling with an accredited program that she can do at her own pace.

Thanks for any advice or encouragement you may have!


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## Jmrogers4

Oh goodness, writing is our biggest issue as well.  We have actually found that the public school has more to help him out.  Jack went to a private school last year (Freshman) and struggled with his health and especially in English class even though it was essentially a repeat of his 8th grade year and covered the same curriculum.  (A in 8th, C in 9th).
We struggled with where to place in Accelerated English (which was the track he was on before transferring to the private school) or Regular English.  His counselor was great he suggested we try Accelerated and could always drop him down if it was a problem.  The first semester was a bit of a struggle and his writing was okay if I went over it and pulled more details from him and really helped him. They have a writer's block at his school now on Mondays and Wednesdays at lunch, which is essentially seniors in the AP English class go over your papers and help you with the writing.  This has been amazing for us.  Current grade in English A.  I think his improved health has helped as well as the fatigue isn't a huge issue anymore and I think in the past he just wanted to hurry through it and get it done it so he could rest.
While he will not be doing AP in English next year, we've figured it is just not his strongest subject and that's okay.  
You of course know your child best and we found visiting the high school and counselors and even the 504 manager (who happens to have Crohn's and is on humira) just made a great fit and he is happy and thriving.


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## my little penguin

Other thing to suggest is dragon naturally 
A software program where you just speak
The program types out what you say
The difference in writing content from spoken word to trying to type it/write by hand is amazing .

Second testing for special education
Sometimes there are things going on ( not major ) that can cause issues with writing/processing -simple aids ( not a special class ) may be all that is needed .

Good luck


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## crohnsinct

For starters my oldest daughter had average grades.  Average student.  Took only one or two honors courses.  English (her worst subject) she took very basic level...not even college prep.  Her SAT scores were dead on average for the country which in our area would be a pathetic score (very competitive).  She applied and was accepted to 12 colleges and got scholarships to all but one...her first choice and the one she is attending...go figure!  She was chosen for a very competitive program.  1,100 applicants and they accepted only 100. On paper she was not a candidate for the school but she tried anyway. I think what got her in was her mission work and investigation in her chosen field (she shadowed an OT for 40 hours and had a sister who underwent OT).  My point...don't worry about the transcript.  Her comfort with the subject matter and her growth is what is important. Colleges look at the whole individual and really look to the essay to understand the person.  She will go to college if she wants! 

Jae seems very intelligent and driven but really how can anyone expect her to perform at such high levels when she is not feeling well, fatigued and mal nourished.  I really think when she is healed up and able to absorb all her nutrients and they feed all her systems you will probably see a very different girl.  

O is in all honors with the exception of English...her worst subject.  She is also in basic level...like her sister.  I worry she is taking too aggressive a schedule next year and that she needs some down time to be a kid and also in the back of my head wonder, "what if she flares". 

T is a nightmare when it comes to school.  She has severe dyslexia and like Jae if she experiences a set back she gives up.  Everything in school is a constant struggle for her and she also feels she will never go to college.  She went to a private school and then public.  She likes the public school better.  Larger, more diverse community of learners.  She isn't so obvious anymore.  Lots of services.  They are also amazing with the 504 and all kinds of support for her with regard to her Crohn's.  

I would echo MLP's suggestion of learning testing.  There could be an issue you haven't discovered.  After T was dx'd we tested her sisters and guess what...Dyslexic!  Every one of them.  But the older girls somehow learned a way around it so if it ain't broke don't fix it.   

If you are able to identify a learning difference they have to make accomodations for that just like with IBD.  Maybe oral testing for non English classes etc.  

Good Luck!


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## CarolinAlaska

Thanks, Ladies.  Do I call and set up a meeting with her counselor they assigned us to to discuss these things?


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## SupportiveMom

I would Carol. Maybe they have options you haven't thought of. When D started high school I sat down with guidance and principal and was introduced to a class that I didn't know existed. it's like. homework helper and that teacher is my go to person to gather homework when D can't get to school, and it gives her a place to catch up on concepts she might have missed. I didn't even know it was an option. Maybe the school has an alternative you don't know of. Big hugs.


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## crohnsinct

Yes.  In public school it is the guidance counselor who starts that ball rolling.


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## kimmidwife

Carolinalaska,
Sent you a PM


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## SAHM

:shifty-t:We are doing our best to be "patient", but we are waiting anxiously for our 3rd Remicade treatment.  How did you survive in the mean time?  My son's first infusion, he had 1 good day after.  His second, 2 weeks later, he had 5 good days.  Now we are waiting the 4 weeks until the 3rd infusion! tick tock tick tock.  I sure hope this works!  Anyone else have this happen?  How many days do you think we will get after our 3rd infusion?? Thanks for your input.


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## Jmrogers4

Jack did not make the full 8 weeks after the 3rd infusion we ended up on a 6 week schedule for several infusions and had to adjust dosage at nearly each one, just couldn't get to that 8 week mark.  We have finally ended up on the high end of dosage (standard is 5-10ml/kg) at 10ml/kg every 8 weeks and so far so good. So I think it takes tweaking of time/dosage until you find what works.
Hope he makes it until the next infusion without too many issues and soon can make the whole 8 weeks with no problems


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## crohnsinct

Same here.  LOTS of tweaking.  In the end it took us about 6 months to experience any sort of remission.  Tweaking aside, it does take a while for the drug to work.  Is he on anything else to handle the inflammation while you wait for Remicade to take over?


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## Maya142

It took a while for us - two infusions before she saw any improvement at all and 4 before she was actually better. Even after that it took a while to get the dose/frequency right.
Hang in there!


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## SAHM

He is on Lialda.  He was also on Imuran, but the doc took him off of it...it was messing with his liver.  I know that a year from now, this will seem like nothing, but right now, it's like waiting for paint to dry, or a pot to boil.


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## my little penguin

It took DS all three infusions plus a week or two
He never made it the full 8 weeks
He only had infusions every 6.5 weeks at a higher dose


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## SAHM

My son is also experiencing insomnia....His clock is definitely off, - for example, if he falls asleep at midnight, he sleeps til noon...but sometimes he finds himself up until 5 a.m. Anyone else's kids experience this?


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## CarolinAlaska

Both of my teens have sleep issues.  Our recent 30 day Whole30 challenge resolved this in both girls.  I think it may be related to nutrition.  Calm is an organic product that helped before the diet.


----------



## lenny

My son had a sleep study done last year.  Even though he often flips his nights and days around, he's totally normal and the cause is screen time.  The doctor said every once in a while he takes a bunch of teens camping for a week and they're all on good schedules when the week is over.

His cure: Light exposure during the day and none at night.


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## SupportiveMom

Samh I would have the talk to the doc about combo therapy. When my kid was on Remicade she too didn't get it to last more than 3 weeks and our doc added Methotrexate. She was already on Prednisone too. When Remicade was stopped for her Methotrexate was the bridge as she waited to get onto Humira. She is now on Imuran & Simponi  as combo therapy. Sometimes 1 drug just isn't enough. Studies have shown great results for combo therapy especially with Remicade.


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## Maya142

SupportiveMom is right - some kids really do need a combo of meds!
My daughter also always had to be on a combination of drugs: first Humira and MTX, Remicade and MTX, Remicade and Imuran and now Simponi and Imuran. Remicade by itself didn't help her at all. Adding MTX to it made all the difference in the world.

We also have sleep issues but they are due to joint pain. My daughter's pain management doctor recommended an app that does guided imagery and relaxation. It's called iSleepeasy. It really helps my daughter relax when she's lying awake at night and she often falls asleep listening to it.


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## SupportiveMom

Any of you catch your kids with marijuana?  D decided to smoke her 1st. She said she read it helps people with Crohns and the pain. Have to say it made the issue tougher to argue. Anyone deal with this? How would you or did you deal with it?


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## Maya142

My older daughter also tried marijuana. She was 18 at the time and in a lot of pain. Since she was 18, my husband and I made it very clear we disapproved and weren't going to help her if she got in some sort of trouble because of it. We also told her if she continued smoking she had to inform all her doctors since she was now an adult.

Luckily she didn't like the feeling of being high and also didn't feel like it helped much with pain, so she only smoked a couple times. 

I have heard adults say on the forums that marijuana has really helped them though and have one friend with IBD who gets medical marijuana. It was a very difficult issue for us to handle because on the one hand it's illegal but on the other what if it really helps?


----------



## SupportiveMom

Here the laws are much more lax about it for adults, but certainly not for kids. I don't have an issue with marijuana specifically but I do for a kid, especially who hasn't stopped growing.  Getting in trouble with the law is not much of a threat here for it. 

To me it was a big cry for help. She just wants to not be in pain. Of course she reads too much on the net and knows adults use it for pain management. Makes sense she would want to try it too. Punishment is still being laid out, but being sent to her room isn't a punishment for her, that is where she has been most days cause she can barely get out of bed. I didn't try alcohol until I was 16, and she seems to be starting early. I think this disease has made her grow up way too fast but her naivity hasn't caught up.


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## Maya142

Does she see a pain management doctor? They can be very helpful - one of my biggest regrets is not getting my girls to one earlier. There are some non-medication options that might really help - we've had a lot of success with a TENS unit. 

My daughter also now sees a psychologist - that helped a LOT. It took a while to find one that dealt with kids/young adults with chronic illnesses, but it was so worth it. S is now in college and still sees her.


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## SupportiveMom

The psychologist is ok, but I don't think she found one to mesh with yet. We are on our 2nd one. I'm not sure she will stick. If she had one she meshed with I think it would help. She now has a few IBD friends she talks with, one in her 20s & finishing university and has a jpouch that I think has done the most good for her. I don't think she would tell her therapist she tried pot. If she did I doubt she would get in depth enough about it. 

TENS sounds interesting. I will have to look it up. I will ask about a pain management therapist. I have been just focusing on when they can manage her crohns and find her the rights medication. I am trying to get her to tell the doc what the problems are but she isn't being as clear as she should.


----------



## lenny

We live in a state where it is legal for anyone over the age of 21.  When my son was diagnosed at 16, he also read about the benefits.  

Now, for legal reasons I will not speak anymore about my son, but I will say that it helps my stomach pain and my appetite and I believe it is a very safe drug.


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## SupportiveMom

Lenny what about growth? As an adult I completely understand and wouldn't argue benefits. Hypothetically would you worry about that with it for  kid? Maybe I should take this to the marijuana subform?


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## Maya142

I believe it has detrimental effects on memory and development of maturing brains - we did some research and that was our issue with it. That said, pain medications comes with their own set of horrible issues (including memory issues) so not sure which is better. 

http://www.nytimes.com/2014/11/02/e...ugs-marijuana-adults-teens.html?ref=education


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## Maya142

I wish doctors had been more open about discussing this with us but at the time even medical marijuana wasn't legal in our state.


----------



## lenny

SupportiveMom said:


> Lenny what about growth? As an adult I completely understand and wouldn't argue benefits. Hypothetically would you worry about that with it for  kid? Maybe I should take this to the marijuana subform?


Hypothetically speaking, a 16 year old who has little interest in food isn't going to grow as he should.

My son put on 45 lbs since September and is now 6 ft tall.  He lost 15 lbs in a recent flare, but has gained back 6 lbs this month.

My son's diagnosis was a complete game changer and I'd do pretty much anything to make him feel better.

I've always liked the moto; everything in moderation.


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## SupportiveMom

When you look at the side effects of the meds they are already on and pain meds, pot looks like nothing in comparison. That being said I still can't justify letting her do it. My gut just says this is my line, I can't have you do it at 14. Maybe in 4 years I can let it go. 

I hear you on the weight gain. Prednisone makes D gain weight normally too, but not this time so far.


----------



## Rose

Hi everyone. My heart goes out to all of you wonderful parents and amazing teens. As if being a teen isn't difficult enough, lets add IBD!  My son R was diagnosed with Crohn's Colitis two years ago. I knew something was wrong even sooner but doctors told me everything was fine. Parents always trust your intuition...no one knows your child better than you. He is taking maximum dose of Remicade every four weeks, Methotrexate 15 mg every week and Uceris 9mg every day. I am looking to get more involved with a holistic approach and maybe food sensitivity testing which my gastro (whom I actually love) has told me is a waste of money. Any one else from NJ?


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## SupportiveMom

Welcome Rose. How old is your son? 

My daughter did food sensitivity testing. We found the tests confirmed what we already knew in elimination diets. Our insurance covered it, but I know most don't. Worth checking just in case. The test ran us about $200.


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## Rose

Thank you for responding so quickly. My son just turned 17. He eats so few foods and I am so worried about him losing any more weight. My son was a solid 180 lbs, 5'10. Now he is struggling to maintain 158. I would like to avoid trial and error, if I can. I am also considering adding Turmeric.


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## CalMom

Hi Rose. I am new here but wanted to say Hello. we are trying to figure things out for my son. He seems to be on the better side of Crohn's than a lot of the other kids here (Knocking wood and bracing myself!) Although, these stories ARE very familiar up to a point. The reason I chimed in is b/c you mentioned Tumeric. Go to a good health/vitamin shop and ask about it. It is supposed to be incredible for many reasons: digestion, joint pain, even depression once taken for awhile. If my son would swallow the pill I would definately add it to his repertoire. Good Luck


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## Rose

Thanks. I think that I am definitely going to try Tumeric. Will keep everyone posted.


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## kimmidwife

Rose,
The best turmeric is viva labs from Amazon, curcumin c3 is what it is called.


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## lenny

SupportiveMom said:


> When you look at the side effects of the meds they are already on and pain meds, pot looks like nothing in comparison. That being said I still can't justify letting her do it. My gut just says this is my line, I can't have you do it at 14. Maybe in 4 years I can let it go.
> 
> I hear you on the weight gain. Prednisone makes D gain weight normally too, but not this time so far.


14 is young, but there are strains that don't cause any high, but do offer pain relief.  There are some very young kids using medical marijuana.

I have what's called essential tremor in my left hand.  So far, it only shakes when I drink from a glass, so I switched to using my right hand.
Well, everytime I use marijuana, the tremor completely disappears and I can use my left hand to drink, no problem.  Apparently, people with really bad cases can get medical marijuana just because they have essential tremor.


----------



## lenny

About once a week, my son has a harder time in the bathroom and it was on one of those days that I got him to give me the sample for the FCP.  He's convinced that is going to show more inflamation because of that, but I told him that is not how the tests work.  Am I correct?  Or, does the fact that you had a more difficult time pooping mean you have more inflamation.  It doesn't vary much from day to day, does it?


----------



## crohnsinct

No the difficulty of the bm nor the consistency etc will affect the fecal calprotectin results.  Calprotectin is shed from the lining of the intestine and it is either there or not and the number references how much was there.  There is a good degree of variability in results from one day to the next or from one movement to the next.  Further there really isn't that much evidence to suggest a higher result means worse inflammation as it is pretty individual along with everything else with this disease.  From what our doc tells us they are really just looking for inflammation or not and they do look at the numbers but more from a trend standpoint.


----------



## lenny

I'm sorry, I'm confused.  Are you saying that my son is correct?  That results can vary a lot from one day to the next?


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## SupportiveMom

Consistency of stool is not a measurement of inflammation. You can have diarrhea or constipation and have inflammation. The only way you can know there is for sure inflammation is blood without having the tests needed. The absence of blood doesn't mean there is no inflammation though...  Basically your poop consistency is not a measuring tool for inflammation.


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## Maya142

The results of FC can actually vary within the same day! Here is a study that illustrates that:

http://www.ncbi.nlm.nih.gov/pubmed/25793326


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## crohnsinct

lenny said:


> I'm sorry, I'm confused.  Are you saying that my son is correct?  That results can vary a lot from one day to the next?


Kinda sorta. How's that for definitive?  There are studies that show a pretty wide swing BUT results do not usually swing widely from a nice normal no inflammation reading if say 20 to an inflammation number of 300.  FC is not an exact science. The docs are typically just looking abnormal or normal and making decisions from there. Also looking for trends.

The theory behind the fluctuating numbers has to do with how much cal protection was brought out with each bm. So maybe (emphasis on maybe) first bm of the day will have a higher reading than one taken  say an hour later .  But this is all theory and if you are inflamed it typically will show.


----------



## lenny

My son's GI wants his FCP to be under 180.  If the test can vary 100's of points in a single day, how can it be worth anything?

My son only goes once a day.


----------



## crohnsinct

Our doc says, if you are inflamed it will be raised.  Very rarely will a normal FC reading be a person who is terribly inflamed.  It can happen just not likely and in that case our doc will also look to blood labs and symptoms.  

Also, my theory is, if you are only going once per day not likely there will be much variability. 

Bottom line is no test is 100% accurate and perfect all of the time for all of the people.  They are all just tools and we do our best.


----------



## lenny

I knew the FCP was just a tool, but I thought it was a more informative one.  If inflamation #s can vary a lot on a given day, I don't see them as being a useful tool for how my son's GI is trying to use them: Making sure my son stays at or below 180.

If my son's #s were 180 in the morning and 380 that evening, what are they?  My son's treatment would differ, based on the specimen that was tested, as one would be acceptable to his GI and the other would not.


----------



## crohnsinct

Yeah,  I hear you Lenny. I thought the same with t's test but that is why we do them fairly regularly. At beginning every four weeks. So doc can see trend or repetitively nice low numbers. If every test out there fc is still my favorite.


----------



## Jmrogers4

FC fan here as well.  Did one at a time of remission and it was 90.  Did a couple while flaring (based on other symptoms knew he was flaring but labs were normal) and one was 395 and a couple of weeks later was 450ish so whether it was time of day we took sample or there was indeed more inflammation on that day in the long run it was decided there was inflammation and that was all that mattered.


----------



## lenny

They called with my son's FCP results: "Normal"
They did not tell me a specific number.

That's just with cycling from food to Peptamen.  No drugs.  But, he's only been on food since 3/15, so very new.


----------



## crohnsinct

That's great Lenny!  we got the same with T but she was 100% EEN.  WE haven't done a repeat since adding in food.  That will be in a couple of weeks.  When do they want you to repeat the test again?


----------



## Maya142

That's great news!! Will he continue cycling Peptamen and food?


----------



## pdx

Glad to hear it, Lenny!  Did your son go to any kind of special diet after the Peptamen?


----------



## lenny

No special diet.  Mostly organic*. 
This is what he had yesterday: 4 Peptamen 1.5 Vanilla, a large salad*, 3 scrambled eggs*, hummus* & crackers*, a bowl of fresh strawberries*.


----------



## kimmidwife

Hi all! 
I need some advice. My daughter was offered a summer job at a sleep away camp. The same camy she went to for many summers. According to her last MRE a few wells ago her disease is much improved from the steroids But she is still having terrible pain. She wants to take this job but we are both worried about whether she will be able to do it with all the pain she is having. On the one hand I really want her to do this I think it would help boost her self confidence a lot and show her that she should not let the crohn's control her life on the other hand what if she takes the job and then can't do it and they are counting on her. Once camp starts it is hard for them to replace staff. 
The camp does know about her illness and they are very supportive. In fact they constructed a job for her that would not be to stressful. 
What do you think?


----------



## Farmwife

DO IT! 
They all know about her health and made a job that was tailored for her....take it.
I think all us parents hope that our kids could work for people like that.

The worry will be there no matter what she does with her summer. 
You've done such a good job as a mother that I'm sure she'll be just fine if something pops up.

HUGS


----------



## Maya142

I would let her decide - does she think she can handle it in pain?  

It's great that the camp understands and is so accommodating. One of the considerations might be - is she far away from home? If something happens, is there a good hospital nearby? 

Unfortunately, my daughter has had to give up several jobs/opportunities (including being a camp counselor!) because of just being too unwell or in too much pain. It's really just the worst.

I really hope she feels well enough to do it!


----------



## SupportiveMom

How far away is the camp? Can you get there when needed? If she wasn't relying on steroids I would say go, but still on steroids & pain I would be hesitant for a whole summer.


----------



## kimmidwife

We will be about an hour and a half away from the camp. I think the closest hospital is an hour in the opposite direction from us.
My biggest worry is her being able to handle this pain. Today she didn't even want to get out of bed. I have been giving her tramadol but now she says it is not helping. Really hoping we can get in with this new pediatric pain management doctor. Waiting to hear about a referral.


----------



## crohnsinct

Yeah, I guess there is a difference between then tailoring a job for her when she is doing well and her entering the job in an already sub par place.  It sounds like she will go to this camp either way and it is just a matter of whether or not she wants to take the job. So sounds more like you jus don't want to leave them in a lurch should she not be able to perform the duties.  How long can they wait for an answer?  Can you put off the decision until her next infusion to see if the Entyvio kicks in?  

If she has to pass this time, there will be other chances.  Perhaps even at this camp.  I think they will appreciate the honesty and your consideration of their position and if you come back next year and say, "good to go" they will really value that and have confidence in offering her another position.


----------



## kimmidwife

Crohns instinct,
She will only go if she works there. She is to old to be a camper. The director said we can let him know after the next infusion but I don't know if that will help because then for a week after she feels terrible. I just don't know what to do. On the one hand I think this would be great for her. On the other I am very nervous.


----------



## CarolinAlaska

J is taking her first job working at a camp.  Fortunately they know her well because my husband works there too.  I am nervous about the long hours and stress on her, nights in a cabin, etc, but I feel it is better to let her try.  She worked there as a volunteer last weekend and loved it.  She is not doing quite as roughly as your daughter, however.  She isn't in remission, though, and I'm hoping she gets put on Remicade by then and has a big turnaround.  I hope the same for your daughter too.


----------



## kimmidwife

Thanks CarolinAlaska!
Praying for both our girls!


----------



## Poached Pear

I was going to write, "I'd love to be part of the group." Manners at all times please! I forgot for a millisecond that this is really a group that none of us really want to join. We all wish we didn't have the connection. As for me, I am so grateful to have the support and kindness of people who get it, really, like no one else can.


----------



## jenni92475

Hi everyone! New to this. I'm not even sure if I'm posting in the right forum? I have a 13 year old daughter who was diagnosed 1year ago with crohns. She was on prednisone entocort and 6 mp. She has not grown at all and is losing weight. She also is becoming more anemic. The dr gave us 2 options. Biologics or enteral therapy. We have chosen to try enteral therapy. Any advice would be helpful! Should we have her just drink the formula or try a nasogastric tube? Any parents with success stories??


----------



## Jmrogers4

My son drank the formula but I will say it was kind of a pain since you have to have so many a day at the time it was 8-9 so he was basically having to drink 1 about every 2 hours and if we got off from that timing it messed the whole day up. Initially he had a huge issue with taste and it would take him nearly 2 hours to gag one down.  He literally stood over the sink with a drink and a glass of water, would take a sip of the drink a big gulp of water and gag.  It was exhausting! After about a week he could suck one down pretty fast so it was just timetable at that point.  We would probably go NG tube if we ever have to do it again.
As far as the the not growing and biologic vs. EN therapy our experience was we did the EN therapy hoping not to go the biologics route but as soon as we added food back in inflammation came back and had to go the remicade route.  For us remicade has been a miracle, he has been on it for a year and a half now, started out at 5'1" (14 1/2 y.o) he is now somewhere between 5'9"-5'10" and still growing.
Hope the EN does the trick and gets her to remission.  Will she continue with the 6MP while on it?


----------



## CDJ

Hi, jenni92475, welcome to the group.

My son [ 14 ] has done enteral therapy 3/4 times.  It is a good way to allow the bowel to recover.  I am in the UK and we use Modulen here, not sure if it is the same where you are?   Josh has drunk the Modulen, this gives 2000 calories a day and gives all nutrients needed.  It can be tough drinking it as it is a large volume over the day, but usually after a week Josh just gets on with it.  Because it gives all calories they should never feel hungry.  The hardest part sometimes is not physically chewing something.   But it is worth keeping going.
He has also had modulen via an NG tube.  This is an easier way as they don't have to drink it, but more noticeable to others due to the tube being in place.  It will depend on how your daughter feels about this.

You could try the other forums on here Parents of Kids with IBD.  You will get lots of help there also.  Good luck x


----------



## jenni92475

Jmrogers4 said:


> My son drank the formula but I will say it was kind of a pain since you have to have so many a day at the time it was 8-9 so he was basically having to drink 1 about every 2 hours and if we got off from that timing it messed the whole day up. Initially he had a huge issue with taste and it would take him nearly 2 hours to gag one down.  He literally stood over the sink with a drink and a glass of water, would take a sip of the drink a big gulp of water and gag.  It was exhausting! After about a week he could suck one down pretty fast so it was just timetable at that point.  We would probably go NG tube if we ever have to do it again.
> As far as the the not growing and biologic vs. EN therapy our experience was we did the EN therapy hoping not to go the biologics route but as soon as we added food back in inflammation came back and had to go the remicade route.  For us remicade has been a miracle, he has been on it for a year and a half now, started out at 5'1" (14 1/2 y.o) he is now somewhere between 5'9"-5'10" and still growing.
> Hope the EN does the trick and gets her to remission.  Will she continue with the 6MP while on it?


yes she will stay on the 6mp. I think we will have the same issues with her drinking the formula. So the ng tube will always stay in? or does she put it in  only when you need to? My dr mentioned a feeding tube but it sounded like it was a port put in her stomach?


----------



## Jmrogers4

Many of the kiddos put the tube in at night and pull it out in the morning but it can also be left in if she doesn't have an issue with it being in all the time.  There is a great video by a young girl on youtube putting in the tube.
A few different kinds of feeding tubes, NG is a feeding tube but there is also J-Tube which is port in stomach although I think most unless they are really young go for NG tube first.


----------



## jenni92475

Thank you so much! Im so glad I found this forum. Its been a huge help!


----------



## crohnsinct

I also posted on your other thread but both of my girls drank their formula with no real issue BUT they did Boost and Ensure and they are the most palatable ones.  They do feel normal hunger when it is time for their next shake, just like regular meals and eating but the shake takes care of that.  

Lots of suggestions: 

Make is super cold (tastes better) 
Small opening so you don't smell it as much 
Use a straw because it shoots past most of the taste buds that way 

Don't focus on the 6 or 8 weeks.  I presented it t both of my girls as, "let's see if you could do one shake", then it was let's see if you could do a day, etc. EEN is not an all or nothing deal.  You could try and if it is truly so awful she can't continue, you could always opt for the biologics. It helped my girls to know they had an escape clause anytime they wanted to call it quits.  Before they knew it, they were feeling better and that was all the motivation they needed.  Biologics however are an all or nothing.  Once you sign up to use them, you can't willy nilly change your mind and try something else.  The reason is because once you stop the body builds antibodies to them and you may not be able to go back on.


----------



## Farmwife

jenni92475 said:


> yes she will stay on the 6mp. I think we will have the same issues with her drinking the formula. So the ng tube will always stay in? or does she put it in  only when you need to? My dr mentioned a feeding tube but it sounded like it was a port put in her stomach?


The port in the stomach is called a gtube. Theirs different types and is usually used in long term case ( but not always). 
Most GI's that I've heard about start with n-g tubes and will than go to g-tubes if it's needed for a longer period of time.
My dd has a gtube placed because she was/ is so young and still have to have extra formula to thrive at her potential.
She drinks kids Boost and can do most of it by mouth but when her stomach flares she gets it thru her tube.
We are big fans of EN, she's done it for 3 years( of and on). She is also on Remicade, Mtx and sulfasalazine.


----------



## SAHM

:ghug: I hope this photo uploaded...it is a picture of my son on a relaxing two hour bike ride with his Dad on Prince Edward Island.  They took a trip together this weekend.  Was he exhausted afterwards I asked? Nope.  He just wanted a steak!  What is working for him? Being Gluten and Dairy free, focussing on meat and veggies, and being on Remicade.  He had his 4th infusion a few weeks ago.  It has been a rough road, and I thought I'd never see this.  He is coming into his own and this picture of him practicing riding hands free just says it all.  My heart is soaring.  Sending you hope and prayers for a healthy future for all of our kids!


----------



## Maya142

Great news :dusty:!!! Love the picture!!


----------



## Mr chicken

Wonderful picture !!!


----------



## CrohnsKidMom

Great pic!  Ahhh, lovely PEI...


----------



## SupportiveMom

Last night was my non crohnie kid's 16th birthday. We had a fire & cooked smores with the neighborhood kids. (20 teens!) Somewhere in this D started talking about her surgery. The kids were so cool! asking questions, wanted to see her ostomy sample bag, wanted to know about how she 'poops'. She even gave them a refresher digestive lesson. They were all so accepting I know now D has a ton of support. I was so proud she felt she could share so much and feel comfortable about it!


----------



## CrohnsKidMom

That is so awesome, supportive mom!  Love to hear a story like this.


----------



## pdx

That's really great--both that the other kids were so interested and accepting, and that your daughter felt comfortable sharing.


----------



## Farmwife

Great to hear about both kids!:thumleft:


----------



## Jmrogers4

Cool, happy birthday to your other kiddo


----------



## Lizknits99

jenni92475 said:


> Hi everyone! New to this. I'm not even sure if I'm posting in the right forum? I have a 13 year old daughter who was diagnosed 1year ago with crohns. She was on prednisone entocort and 6 mp. She has not grown at all and is losing weight. She also is becoming more anemic. The dr gave us 2 options. Biologics or enteral therapy. We have chosen to try enteral therapy. Any advice would be helpful! Should we have her just drink the formula or try a nasogastric tube? Any parents with success stories??



Hi jenni,

My son is now half way through EEN and is drinking his no problem.  The first week was tough but has gotten better as we have gone along.

We have had lots of changes to the family to make the treatment easier for my boy.  I have been doing meal replacement shakes, my other son and husband have eaten out a lot.  None of his favourite meals have been cooked for the last four weeks!  

We had a family holiday and managed that ok.

Apparently the last week can be tough, like the first but difficult to stay motivated to finish off.

Liz


----------



## Toniann

Hi
I am new to posting, although I use the forum a lot to help me when worried about my son.
My DS was diagnosed in 2013 at the age of 10 (he is now 13) with Ulcerative Colitis (pancolitis), he has a TPMT of zero so cannot have Azathioprine and the like. He is currently on Infliximab  (just had 3rd dose) and 4g Pentasa a day. He is very well looked after locally by an excellent Paed Gastro team and also at Great Ormond Street. The care he receives is amazing, but this year has been really hard with flaring, inflammation, exhaustion & pain,
I do find great comfort coming on to the threads and finding I'm not alone, so thought I'd stop lurking and introduce myself


----------



## Jmrogers4

Welcome Toniann
Hope the infliximab is his magic medicine and the next year and many after are free from flares, inflammation, exhaustion and pain.


----------



## Toniann

thank you JM, I have 'seen' your posts here and there and I am so grateful for the info everyone shares


----------



## CDJ

Hi, Tonian, welcome to the group.   My son is 14.  He was diagnosed at 8 with crohns. I understand the flaring, exhaustion etc.   Josh has been through a lot over the past couple of years, and missing a lot of school due to this.   He started on Infliximab this year.  He is due his 5th infusion in two weeks time.  It has worked really well for him.  He has finally started puberty and grown 4 " since he started it.
Hope it works as well for your son.


----------



## pdx

Welcome, Toniann!  I have a 13-year-old as well.  She started Infliximab last December, and is doing very well now.  She's gained more than 20 pounds since January.  She was out of school from Dec-June, but she will be going back to school for 8th grade at the end of August.


----------



## jenni92475

Lizknits99 said:


> Hi jenni,
> 
> My son is now half way through EEN and is drinking his no problem.  The first week was tough but has gotten better as we have gone along.
> 
> We have had lots of changes to the family to make the treatment easier for my boy.  I have been doing meal replacement shakes, my other son and husband have eaten out a lot.  None of his favourite meals have been cooked for the last four weeks!
> 
> 
> We had a family holiday and managed that ok.
> 
> Apparently the last week can be tough, like the first but difficult to stay motivated to finish off.
> 
> Liz


We are in our last couple of days of EEN!! My daughter is so excited she can't sleep. This last couple of months with her not being able to eat has been rough! Although she looks so healthy and has SO much more energy! I can't believe the difference in her. I'm struggling with what her partial enteral therapy diet will be. The children's hospital here in Milwaukee Wisconsin has no experience with a child completing EEN. The dietician gave me a diet for kids that have bloating and gas. I decided after researching that we would start the IBD-aid diet. Makes much more sense. What are your plans after you complete the EEN?


----------



## Toniann

CDJ said:


> Hi, Tonian, welcome to the group.   My son is 14.  He was diagnosed at 8 with crohns. I understand the flaring, exhaustion etc.   Josh has been through a lot over the past couple of years, and missing a lot of school due to this.   He started on Infliximab this year.  He is due his 5th infusion in two weeks time.  It has worked really well for him.  He has finally started puberty and grown 4 " since he started it.
> Hope it works as well for your son.


Thank you CDJ & pdx 

apart from at diagnosis when he'd lost a lot of weight, my son (M) has struggled more with being overweight - every time he was on pred he gained a lot and because the Drs are good at controlling his symptoms he's never at a point where he's losing. The pain is the worst, he's missed nearly half of school this year . But today there's no pain(but diarrhoea! Can't have everything).


----------



## CDJ

Josh has always been more borderline overweight.   He did lose 16kg two years ago when he went into a massive flare, but on the whole he maintains his weight.
The pain when flaring is really hard.   I know from Josh just how painful this can be.  It is really hard to watch your child in so much pain and not be able to do anything about it.  I wouldn't wish this on anyone.

How is your son's school with him missing so much?  It seems to vary as to the school and which part of the country you are in in how they deal with absences.
I have been lucky with Josh's school and they have been good with the amount of time he has had off.  At one point he got down to 52%, though he is back to 73% now. Still below the 95% he should be, but as he is top groups for just about most things he is obviously able to keep up.

He is going into year 10 after the summer, so starting GCES's.  I am hoping that stress doesn't start a flare up again.


----------



## Toniann

M's school is ok. His Year 7 year he had a week off having iron infusions, and despite me giving packs of info to Heads of Year, the Welfare Officer and the Family Worker plus having reassurances that all his teachers were aware I still got a letter from the Attendance Team asking why he was off. Sorted that with a phone call and a letter from his Nurse.
Year 8 started off well, but really after Easter he's not been in regularly, 66%. I have asked for support with him catching up but not a lot materialised. I have good comms with his new Head of House, so will kick off support and comms again in Sept. I'd heard from a Family Worker friend that if attendance is less than 70% you can get a tutor to help. I've asked several times but it's been dodged! I will get him a private English tutor come Sept, it's his weakest area. 
And I love Uttoexeter, had friends who lived there years ago, always enjoyed visiting. My maternal parents home was Wellington so I have a deep love of the Midlands


----------



## CDJ

I had the same problems with getting work home.   I just ended up phoning and emailing constantly until they got fed up with me  Even then it was only certain teachers who would send work home.  I think that they are very good at dodging issues if they can get away with it.
We have never had a problem with the attendance team.  I just update school all the time and he has been fine.
Josh will be starting a new school in September [ luckily the same as the one I work at ], so I will be starting over with getting work home if he starts missing school.  As I work there, they are already aware of Josh's issues, and already have a care plan in place for him  
I didn't know about a tutor for attendance below 70%, no one had ever told us that.  That is useful to know if we have problems again.

I know Luton fairly well.  I grew up in Hatfield, and my elder son and his family now live in St. Albans.


----------



## araceli

Welcome Toniann. Daughter Dx at 14, now almost 19. I hope remicade works wonders for your Son.


----------



## Mr chicken

Welcome!! 
Ds was dx at age 7
Placed on remicade at age 8
And is now on humira plus Mtx plus partial enteral nutrition crohns exclusive diet at age 11.


----------



## CrohnsKidMom

Welcome Toniann!  My son was dx'd in 2013 as well, and has just had his 2nd Remicade infusion as MTX failed after being on it for 2 years.  Glad you are finding help and support on this forum.  I too, feel greatly blessed to have found it!


----------



## jenni92475

Mr chicken said:


> Welcome!!
> Ds was dx at age 7
> Placed on remicade at age 8
> And is now on humira plus Mtx plus partial enteral nutrition crohns exclusive diet at age 11.


Can you tell me what you are doing for the partial enteral therapy???


----------



## Mr chicken

http://www.crohnsforum.com/showthread.php?t=71686
This is the thread on DS and his diet


----------



## Hope345

Need advice on how to bring more happiness and communication to teens:

how do I help my daughters who are always tired find happiness?
they find some with each other and doing things on their own in their rooms: blogging, looking up interesting things on line etc....and they both cook.

I guess I need to know how I personally can help bring them happiness.  I am their advocate, I have to question them quite often on health issues, buy all the healthy groceries, work full time and there are now times they actually want to be around me....         however they never want to do a craft or play a game with me.  I feel stumped on what I can do with them.  We talk and I love that, but sometimes they just stand there or lay there and I feel like I am letting them down.     what else can I say or do?   I love them so much it hurts.


----------



## Mr chicken

If your kiddo is on the right med /diet combo then they should be tired all the time.
DS is tired the day before his humira shot but otherwise not an issue .
You need to find activities outside the house that she is interested in .
After school clubs , activities with friends etc.,.
If she is generally too tired for these things then you need to talk to her doc to up meds change meds etc...
Quality of life should be a priority .
Fatigue is a sign of active illness


----------



## SupportiveMom

My mom always told me you do your job right as a parent if they need you less and less as they age. Its hard because I want to do things with them. They go through cycles and either want me around a ton, or very little. Hope345 sounds like you are doing all right things. Maybe they are already pretty happy?


----------



## DustyKat

:ghug::ghug::ghug: 

I think they when they are teenagers and young adults they need their space hun and they don’t necessarily look to have spaces filled by us. 

From reading what you have written I get the feeling that you have done everything right and at just the right level. I have two young adult children with Crohn’s and one of the positives that has come out of that is that they have each other and that can be very comforting for them both. 

I understand completely where you are coming from, we have a deep seated need when our children aren’t blessed with healthfulness to try and make all we can perfect and uncomplicated for them. We feel every hurt, every setback, every challenge, every injustice as if it were own and more and as they grow into adults this becomes even more apparent as they need us less. I know this need so well mum and over the years I have learnt to step back and take their lead but in doing so I have reinforced to them that I will always be here for them no matter what, that they can tell me anything and know that I will and advise without judgement or prejudice. 

If you have something planned ask if they would like to go with you, if they would like to play a game, watch a show together and so on. If they say yes then all well and good but if they decline don’t take it as something you have or haven’t done but simply that it is their choice at that time on that day. Sometimes the kids will actually come to me and ask that I do something with them, then I jump at the chance! :lol: 

I think being their mum, being there for them, being their rock, being their advocate, keeping them safe, and loving them more than life itself brings them all the happiness they need. 

Well done mum. :heart:

Dusty. xxx


----------



## Toniann

Hi, I have a question, although I probably know the answer but am seeking reassurance really.
My son, M, is 13 and 15 days ago had his 3rd loading dose of Infliximab. After his 2nd dose he had a lot of bloating, gas  and loose, bloody poops after 2 weeks. He did have some stomach pain, but when I took him to the Paeds Unit (my hospital has a paediatric emergency ward and my son has open access to it, there are always Drs there and they can get hold of his gastro Drs almost at any time day or night) they examined him thoroughly and although his CRP was up his pains weren't due to anything they were worried about, more likely the flare fighting through. The next week  he went in for his 3rd dose, delayed by a day because of a slightly raised temp & he was clammy, the blood was increasing and he had bad back pain (which we think was muscular/lack of movement because of tiredness)  His Drs said come in the next day for treatment, which we did. He was much better after treatment, almost normal poops for the first week. Now at the beginning of the third week although he's only pooping 2-3 times a day, no night waking, no pain the amount of blood is worrying me.
At the 3rd dose they sent for an Infliximab levels test, but I don't know the results yet. 
When his Consultant decided on the Infliximab path he said that his quality of life must be awful and we needed to get him in remission.his faecal protection levels were 1800 at Xmas (I know! A symptomatic en too) and 500 after a 3 month course of prednisone in April. 
I am ringing his nurse tomorrow, but wondered if anyone else had gone through something similar? Is this a waiting game where the Infliximab builds up over time and aids remission? Does it look like it's not working?
I have to be careful about the questions I ask when he's present as he doesn't quite understand what we are talking about and gets scared.
When I see all what I've written it worries me and makes me think this is a really aggressive flare. He is tpmt zero so can't have azathioprine, he cannot tolerate methotrexate. He is also on pentasa.
Sorry for the long post  thank you for reading.


----------



## Mr chicken

Tmpt wouldn't have anything to do with mtx ....
As far as infusions for some like my kiddo it really took much longer to build up and he had to have a higher dose at shorter interval
7.5mg/kg at every 6 weeks
5mg/kg just wasn't enough 

Let us know what the nurse says


----------



## Maya142

My daughter also needed a higher dose - we went from 5mg/kg to 7.5mg/kg to 10mg/kg and she needed it every 4-5 weeks. It took us a while to find the right dose and frequency. Some kids do see an immediate improvement but it took my daughter 4 infusions before she was much better, so hang in there!

She also had a horrible time tolerating MTX so I can sympathize with that!


----------



## pdx

My daughter didn't show much improvement until about 4 months after starting infliximab.  She ended up needing some other treatments to help tide her over until it started working (including MTX, which she still takes), and she needed an increased dose too (7 mg/kg every 6 weeks).  I know its hard to wait when your child is so sick, but there's a good chance that the infliximab will still work for your son.


----------



## Toniann

Thank you Mr chicken, Maya142 & pdx.

Sometimes waiting it out is so hard


----------



## crohnsinct

Another one who had to wait here.  For my daughter she never really reached smooth sailing until 6 months in.  Every time we tapered prednisone, regardless of where in the schedule we were (she was every 4 weeks at 11mg/kg) she would still start to bleed with loose stools.  We added a course of EEN for 8 weeks and that bought her the time she needed for the Remicade to take over.  

It is not surprising that the Pentasa is not holding the disease at bay while you wait for the Remicade to work.  Has Pednisone been completely tapered?  Our doc keeps the kids on steroids or EEN while waiting for the Remicade to take hold.  

Hopefully you have some answers from GI by now.


----------



## Toniann

Thank you crohnsinct.
I'm still waiting to talk to his nurse (our primary very knowledgeable clinical specialist nurse  ). The situation isn't 'desperate', it just seems like a loooong wait til his next dose of Infliximab.
He's not been on prednisone since end of a three month course in March. The Drs here are very reluctant to give it because of the side effects. He puts on a lot of weight which is then hard to lose because of the exhaustion.
hes seems to be doing ok, a bit of a sore throat and sharp cough, no tummy pains (which is always the worst symptom), just very loose poop with blood.

I'd like to thank all of you for your support and just simply sharing your children's journeys. It's hard sometimes for people to understand how life is and it's a comfort there are so many of you that really know what I'm trying to say


----------



## Toniann

Well I've talked to his nurse, we did his PUCAI which came out at 30 which she said was the cusp of a moderate flare. His ESR was 31 which said said was raised but not scarily so (he has a historically raised ESR), his CPR was 36. All points to and confirms this flare activity. He has no Infliximab antibodies and he levels at the last infusion were good.
She's going to ring The GOSH team and let them know, and hopefully they can give him something to help the remicade do its job.


----------



## Toniann

update - he's in our local hospital having iv steroids, hopefully to heal what is bleeding.Fingers crossed he responds well and it works otherwise it's off to GOSH .


----------



## Mr chicken

Hope the steroids calm things down


----------



## pdx

IV steroids were one of the treatments that helped my daughter while we were waiting for Remicade to kick in.  Hope they help your son too!


----------



## Toniann

I did mention the 'calming down' effect to our consultant today, but they were of the opinion that if the remicade wasn't effective by the third dose then it won't be by the fourth or fifth either. They said his antibodies weren't at a level that concerned them, but for him to get poorly two weeks post infusion means it's not working as it should.
Going stir crazy in the hospital!

Edit - I did request that continuing remicade for next dose if feasible, the protocols here may be different to the U.S. though.


----------



## SupportiveMom

The Remicade effectiveness has some merit in research by dose 5 if I recall from my kids Remi days.glad to hear no antibodies. Have they discussed other options after Remicade?


----------



## Toniann

They always have a Plan B! M's nurse knows not to give me too much detail about future plans as I Google and panic, which in turn panics M. odd I know, but I have really struggled emotionally this year with worrying and the 'What ifs' are part of the problem for me.
When M was discharged they said they will discuss his next remicade dose at our local clinic & GOSH clinic (both before next dose due)  they have something worked out. 
He's doing well on 40 mg Pred, tapering by 10 mg after a fortnight.


----------



## krb

Hi,  my son was diagnosed with crohn's in February is is 17,  he was put on Humira in April he did okay after about 3 months, but was for about 2 months after that. Now he has developed diarrhea and stomach hurts.  Can't gain weight, plays baseball and was hoping to play in college.  It doesn't look like this disease is going to let him.  Is any one else on Humira and having diarrhea?  Does this   mean the Humira is not working.


----------



## my little penguin

Have you talked to his Gi?
Any new symptoms we let the Gi know about ..
That said Ds had to increase the frequency of his humira to every 10 days and add mtx.
It also took 4-5 months for humira to become fully effective


----------



## crohnsinct

Second calling the doc.  He could just need a tweak in dosage or schedule.  

Give yourself some time.  You are still in the first year.  It tkes a while to sort things out.  

My daughter is an athlete.  Distance runner and swimmer.  She is planning to run in college and going through the recruitment process now.  He absolutely will be able to play in college.  You just have to find what is going to work for him . 

Call the doc and hang in there!


----------



## Mehita

What is his current Humira dosage? Like the others have said, he might just need some dose tweaking.


----------



## Gi-jo-mom

My son was diagnosed with Crohn's  in July of this year with a very large peri-rectal abscess/fistula being the manifesting symptom. He is 14. Then my 18 year old daughter was just diagnosed with Crohn's  this month (November). Her symptoms are the more classic GI issues that gradually got worse after she too got a peri-rectal abscess/fistula. We are finding out that she has probably had Crohn's long before our son, at least 2 years.  My son was started on Humira which is working well for him, we hope to keep it that way and my daughter is going through the tests so that she can start on Remicadee. While I am glad that the doctors are choosing to skip all of the other medications and start with the "big guns" I am also very anxious because because both of the GI docs that we are seeing have used the word "aggressive" when it comes to my children's disease. It's quite scary I have to say. I'm sure you all know that feeling.


----------



## CarolinAlaska

I am so sorry for the nightmare that you and your children are going through.  I'm glad you seem to have competent doctors.


----------



## Optimistic

Gi joe mom,

That is a lot to handle!  I am very sorry. 

The term aggressive is very scary. The meds you are considering though are designed for and proven to work for aggressive cases. I hope relief comes quickly and you all get back to "normal". 

KRB
How is your son?


----------



## cjh51

Hello.  New to the forum.  My 15 year old son was diagnosed with Crohns earlier this year.  He responded well to the initial Prednisone treatment and subsequently went on Methotrexate and it seemed to be helping.
It is no longer working and his doctor is talking about going on Remicade.  When I read all of the FDA warnings about Remicade (Infliximab) it really worries me.  Specifically the warnings about young boys being especially susceptible to Lymphoma while using Infliximab.
Almost feels like we are going out of the pan and into the fire...

Have any here experienced any terrible reactions (as described by the FDA) to treatment using Remicade?  

I've read quite a few posts in this forum and I haven't seen much discussion about Cannabis Oil.  Anyone have any experience, good or bad, with it?


----------



## Jmrogers4

cjh51 there is a thread under treatments for MM.  The forum tries to keep everything contained there about MM since it is still illegal in many places.
Yes, reading about all the side effects is scary but like many of us on here the benefits outweighed the minimal risk. 
I was terrified to start my son on Remicade especially since he had been on Imuran for several years which in and of itself increases the risk. 
Remicade had given my son his life back I try not to think about the possibilities too much after all I let him take risks every day when he gets in his car and drives to school, work, out with friends.  I let him play sports, go fishing, camping because it enhances his quality of life.


----------



## crohnsinct

Running out the door but wanted to welcome you.  

There are a lot of Remicade users here.  Most have had very good luck with it.  The risk of Lymphoma is minimal even with boys.  I think the scary risk you are talking about is the Hepatosplenic T Cell Lymphoma.  If I recall correctly no cases of that occurred in anti tnf treatment alone.  All the cases occurred in combined therapy with a thiopurine.  Even then it is still extremely rare...6 in 10,000 risk.  Your risk without the drugs is 2 in 10,000.  

This is nothing compared to the risk of undertreated or untreated disease which is a certainty.  We didn't know my oldest daughter had the disease and it was happily doing its damage for two years until her first big flare which landed her in the ICU fighting for her life.  There are other such stories.  

My daughter is four years on Remicade and doing great.  gained over 40 pounds and grew 8 1/2".  No increased infections or side effects other than psoriasis.  

Cannibis oil has had some success with treating symptoms but as far as I know so far there is no clinical evidence of it actually reducing inflammation and stopping disease progression.  

Here is an excellent presentation on the risk of the drugs.  Hopefully others will be along shortly.  

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf


----------



## cjh51

Thank you for the information and the document.
That is very helpful.


----------



## my little penguin

Things to think about
Your kiddo is older so you would have to look up those death rates since they would be higher
 We take risk with our kids every single day but no is telling you about it
Risk of death under 14 
1 in 250 by car
1 in 1000 drowning 
Give your child Tylenol as an infant 
Risk of liver damage and Steven Johnson syndrome ( which leads to death )
Same for any antibiotics given

Risk versus benefit
Doctors weight these daily if they prescribe a med it's because the benefit far outweighs and possible risk.
DS was dx at age 7
He is now almost 12
He started remicade at age 8
It last all of 8 months before he had two very mild allergic reactions
It was a good drug and gave him his life back versus other safer drugs which had him curled up in a ball
He is an extremely allergic kid reacts to a lot of drugs , food and bee stings etc...
So the docs figured he would probably react

He currently is on humira and mtx 
It works great 
He has gained weight - at this point 50 lbs since dx and grown 9 or 10 inches 
Good luck


----------



## Optimistic

cjh51,

I'm sorry to hear about your son. I don't have any experience with Remicade, but wanted to say welcome. You will find a lot of good information and support here.


----------



## Momoftwo

If on humira 20mg for 1 year, then moved up to 40mg how long should it take to see improvements since already have been on the 20 for that length of time? Thanks for any help. Daughter 16 still getting random pain in upper belly quandary, told crohns was in terminal ileum, dx 1 year ago but issues with constipation and stomach pains since she was 8. Not sure about diets to try, dr said eat anything but she might have some allergies I'm thinking......just not sure where to begin, thanks again for any help.


----------



## my little penguin

Your 16 year old Dd was on humira 20 mg???
My kiddo is 11 and started 40 mg at age 9


----------



## Maya142

How much does your 16 year old weigh? When my daughter was 13, she was put on 40mg of Humira every other week and when that didn't work, 40 mg weekly.

Humira sometimes takes quite a while to work, so it could be a few months before the dose increase makes a difference. Some kids do feel a difference immediately with a dose increase, and others take a while.


----------



## Momoftwo

She was low weight and they were iffy but went with the 20mg, since then she has gained so dr upped to 40mg, but she says she can't tell it's working but this is only the second 40mg dose, I'm just hoping even tho she was on 20 for a year, it will not take long to see results. The 20 seemed to help the first 7 -8 months.


----------



## Maya142

If it did help for a while, I'd guess the 40mg will make a difference soon :ghug:.


----------



## my little penguin

When DS switched
He was on 20 mg for the first three months 
It did nothing
Switched to 40 mg took another 2-3 months to see a difference

This last switch was from humira every 10 days 
To ever week 
It took 6 weeks to be fully effective 

Good luck


----------



## Optimistic

Can anyone tell me about true reliability of Prometheus test? 

My son had a false negative.


----------



## my little penguin

http://www.crohnsforum.com/showthread.php?t=33535

Thread discussing the test 

DS wasn't tested for it
But did the 23&me DNa test which showed more than a few crohns genes
And is now doing a complete IBd panel fit kids who are dx before age 10.


----------



## Misty triplett

cjh51 said:


> Hello.  New to the forum.  My 15 year old son was diagnosed with Crohns earlier this year.  He responded well to the initial Prednisone treatment and subsequently went on Methotrexate and it seemed to be helping.
> It is no longer working and his doctor is talking about going on Remicade.  When I read all of the FDA warnings about Remicade (Infliximab) it really worries me.  Specifically the warnings about young boys being especially susceptible to Lymphoma while using Infliximab.
> Almost feels like we are going out of the pan and into the fire...
> 
> Have any here experienced any terrible reactions (as described by the FDA) to treatment using Remicade?
> 
> I've read quite a few posts in this forum and I haven't seen much discussion about Cannabis Oil.  Anyone have any experience, good or bad, with it?




My son had a similiar situation.  was diagnosed in march wtih crohns he was 13 at the time. he was put on prednisone and methotrexate that stopped working for him, he developed a fitsula and was put on remicade quickly after. this has worked well for him and he is back to most normal life activities. i am grateful that he is doing so well but I was very upset and felt that there were no other options other than remicade.  It a tough situation to be put in and a horrible feeling that you cant fix your kid.  I worry about the warnings that come along with all these medications and just hope for the best.
We have not tried cannabis oil as of yet.  we live in a state that this is legal but i hope to wait till my son is a little older and can understand what options he has.


----------



## buchanaj

DD (13) has been on Prednisone for 4 days. She stopped the nighttime diarrhea but is still having several loose bowel movements a day. Is the expectation that the Prednisone will eventually make the diarrhea stop all together?  I have noticed the smell is less putrid.


----------



## my little penguin

The gut takes weeks to heal 
Typically 6-8 weeks to heal depending on damage so the fact she is improving in 4 days is great .
She is on remicade right .
Typically the goal will be to have normal bm and normal energy level and growth 
Just takes time to get there think months not days or weeks


----------



## Maya142

Definitely will take a while - think about how long she's been sick before dx. For some kids, it's years of inflammation that has to heal!

Glad she's already improving though - that's a very good sign!


----------



## buchanaj

my little penguin said:


> The gut takes weeks to heal
> Typically 6-8 weeks to heal depending on damage so the fact she is improving in 4 days is great .
> She is on remicade right .
> Typically the goal will be to have normal bm and normal energy level and growth
> Just takes time to get there think months not days or weeks


She's just on Prednisone right now. We are suppose to get some biopsy results back this week and then we will discuss long term treatment.


----------



## Katrina9

I'm grateful for this site and have found wonderful support on it. Navigating the world of IBD diagnosis, symptoms and treatment is so difficult!

I'm looking for other parents who have had challenges with their kids and school. I know that many kids and their parents are on the same page of going to school no matter how they feel, but our situation is extra complicated due to some mental health issues.

When she feels well, my daughter wants to go to school and does pretty well academically and socially. But, when she doesn't feel well - she is not yet in remission and we are still figuring out the right combination of meds - she wants to be in bed.  Therapy - to address how to go to school when not feeling well - hasn't worked (nor has any variation on encouragement, incentives or negative consequences).

She missed 80 days of 10th grade and despite that came out with a B average in 3 classes, doing a lot of the work on her own.  She is making up one class this summer (which is a nightmare but that is a different story).

We have a 504 plan which protects her and gives her extra time but I just don't know what to do if she is still flaring going into the school year. 11th grade is demanding and important.

My first priority is her health - physical and mental - and getting her into remission. Next, I would like to see her excel as much as she is able. She very much wants to go to college.

I've suggested cyber school to her but am not sure this is the best option for many reasons.

Has anyone else dealt with this situation?

Thank you.


----------



## Clash

My son was at a military prep school when dxed. Due to not being able to get his CD under control and his joint pain hindering physical activity we made the decision to transfer him.

We considered cyber school but after a lot of reading I really felt it would mesh with his learning style.

We looked at a couple of private schools and then decided on a private school that had a flex program. This program allowed students to go at their own pace and could be done in class or on independent study.

C did independent study 4 days a week and went to school on Thursdays if he had questions, needed tutoring, had presentations, quizzes or tests. It wasn't an all day situation either nor required since he could make up tests and quizzes.

This worked well for him. He spent most of the time in independent study at home but did go to classess occasionally for social interaction and then went maybe one Thursday a month to do all his tests, quizzes etc.

He graduated with honors and this type of program worked really well for him. He could've even went through summers and graduated early but we didn't even consider that!

It was still hard since he was doing a lot on his own but it did offer him the best of both worlds.

I hope you find something that works for your daughter. This disease can rob them of so much in their teen years!

Hugs!


----------



## pdx

I don't have too much specific advice, but wanted to offer my support.  I've been in a similar spot, and it's really hard.  It was a little easier for us, though, because my daughter was in middle school when she was diagnosed and flaring, so school was much easier to manage.  

My daughter was diagnosed in Dec. 2014, and she missed school for most of Dec and January.  The combo of feeling terrible physically and mentally (she suffers from anxiety), along with the stress of being so behind in school, was really hard on her.  We finally made the decision for me to leave my job and homeschool her for the spring semester of 7th grade.  It ended up being a great decision.  She was able to do what she needed to get better (including resting a lot and being on an NG-tube round the clock for several months), and do enough work to stay caught up, with very little stress.  I think that in her case, her time at home helped her to get better sooner.  

By the next fall she had reached remission, enthusiastically went back to school for 8th grade, and only missed a few days during the whole year.

So I think you're right to look for something flexible like cyber school (or the type of flexible private school that Clash's son attended), while your daughter is still not feeling well.  Once you find a treatment that works well for her, she will probably be ready and able to step back into regular school.  

I also wouldn't worry if she ends up taking an extra year to finish high school.  In the long run, it won't matter.  

Best of luck.  I know it's overwhelming when you're in the thick of it.  I hope that your daughter starts feeling better really soon.


----------



## CarolinAlaska

Katrina9 said:


> I'm grateful for this site and have found wonderful support on it. Navigating the world of IBD diagnosis, symptoms and treatment is so difficult!
> 
> I'm looking for other parents who have had challenges with their kids and school. I know that many kids and their parents are on the same page of going to school no matter how they feel, but our situation is extra complicated due to some mental health issues.
> 
> When she feels well, my daughter wants to go to school and does pretty well academically and socially. But, when she doesn't feel well - she is not yet in remission and we are still figuring out the right combination of meds - she wants to be in bed.  Therapy - to address how to go to school when not feeling well - hasn't worked (nor has any variation on encouragement, incentives or negative consequences).
> 
> She missed 80 days of 10th grade and despite that came out with a B average in 3 classes, doing a lot of the work on her own.  She is making up one class this summer (which is a nightmare but that is a different story).
> 
> We have a 504 plan which protects her and gives her extra time but I just don't know what to do if she is still flaring going into the school year. 11th grade is demanding and important.
> 
> My first priority is her health - physical and mental - and getting her into remission. Next, I would like to see her excel as much as she is able. She very much wants to go to college.
> 
> I've suggested cyber school to her but am not sure this is the best option for many reasons.
> 
> Has anyone else dealt with this situation?
> 
> Thank you.


I am in the middle of this with my daughter as well.  We will homeschool this year, but I know it isn't the ideal answer.  I wish I had a perfect answer for you.


----------



## my little penguin

Big hugs it's very very tricky 
The mental health side of things can cause avoidance behavior
So the longer she stays away the harder it is to get back 

But you also have the physical side of Ibd
Both are life long and need to be dealt with as adults 

Has she attended camp oasis or similar ?
So she can see how others like her are sick but still get up and "do"
Despite the illness 

What does her therapist recommend about home schooling?
I know most recommend that kids with mental health issues stay in a traditional school as much as possible for the Social side of things but everyone is diffterent


----------



## malorymug

Hi. We struggle with school too. I think I was too easy to convince to stay home early in the disease and it is really hard to change parenting strategies part way through. My son just finished 10th grade too.  His 504 gives him some flexibility but we still have to go before the attendance board every year and explain his absences even though we have doctors notes.  

My kiddo had about 6 weeks this spring where he felt really good. And he really wanted to go to school and join activities. It was a huge change and a wonderful breath of fresh air. So, for us, I think the answer is to stay healthy.

Wish I had some better advice for you.


----------



## Optimistic

Hi Katrina9. I don't have advice but do want to send some support. The school decision is so tough. 

My son is doing well now but the time when he wasn't and we had to look at options is fresh on my mind. He was sent back to hospital before school started one year and all he could ask was when he could go back. Little did I know the challenges of getting him to go that were ahead. 

I looked around and was surprised at how many different ways to school there are. I don't think I have the patience and I know I don't have the skill set to homeschool!  But many large public school systems (I see philly in your bio ) have options to take 1-2 classes online. There are also lots of nontraditional privates in big cities but you have to find them. My favorite and the one I keep in my back pocket is about 30 minutes away but is set up for actors and athletes who do competitions that require them to miss school. It is Tuesday-Thursday 9-12 with options for additional teacher time to fit your schedule. They also have kids who are  equestrians, take college classes, have medical issues, and parents who travel for work/live in 2 places.

I bet you can find options if you talk to everyone you know. 

It also took trying a few therapists before we found one who could help get results. Have you shopped around? 

Good luck. It is hard.


----------



## goldberry

Hello!  I have a teen son who has just been reclassified from probable UC to Crohn's.  He was stable for many years after initial diagnosis of IBD,  with nothing more than 5-ASAs (asacol,  apriso, delzicol).  This is the first real flare he's had.  He is on antibiotics because of abscess/fistula,  and we see a surgeon soon for that.  I'm an RN,  but haven't worked outside the home in a while.  
Nice to meet you all!


----------



## CarolinAlaska

Welcome to the group.  I'm sorry your son is flaring.


----------



## kimmidwife

Welcome! Sorry to hear about your son!


----------



## my little penguin

Welcome
Sorry you need us but many have btdt as parents here for quite some time


----------



## pdx

Sorry you had to find us, but welcome.  Has your son's doctor talked to you about long-term treatment options?


----------



## goldberry

They are talking about Humira or methotrexate,  once the abscess is healed.  

So I have a question:  DS is on Cipro and Flagyl,  now has  informed me he has a yeast thing going on in the private area. 

He just got his abscess drained yesterday,  and a drain put in,  to be removed in two weeks.  He's supposed to do sitz baths three times a day.

I'm scared of yeast getting into the wound.  I have sent a message to his GI physician.  He's already on probiotics.  Any other advice for this?


----------



## Maya142

Yikes!! Your poor boy!

Does your GI have an on-call number? Usually there is a physician you can talk to after hours. That way you can get instructions now.

If not, I'd call tomorrow (just so you get a response more quickly than with an email). I'm guessing he'll be sent to his pediatrician to get something to treat the yeast infection.

Good luck!


----------



## CarolinAlaska

goldberry said:


> They are talking about Humira or methotrexate,  once the abscess is healed.
> 
> So I have a question:  DS is on Cipro and Flagyl,  now has  informed me he has a yeast thing going on in the private area.
> 
> He just got his abscess drained yesterday,  and a drain put in,  to be removed in two weeks.  He's supposed to do sitz baths three times a day.
> 
> I'm scared of yeast getting into the wound.  I have sent a message to his GI physician.  He's already on probiotics.  Any other advice for this?


Your doctor can prescribe oral or topical medicines that are effective for that.  Sichuan orally or nystatin topically.


----------



## goldberry

Thank you for the suggestions! 

My son's regular GI is on vacation and one of his partners answered my query by suggesting we go see our primary to have it looked at.  I mean,  I'm ok with that,  I just thought since the GI physician prescribed the medicines that caused the yeast problem....but it's ok.  Today my son says it's not that bad,  lol.  I was reading that coconut oil has antifungal properties and I have some on hand so maybe we'll try that?  Overall he had a better day today,  so that's good.  He really struggles with the antibiotics,  they make him feel sick and take down his appetite.


----------



## my little penguin

Typically Gi only handles the go issues and consults behind the scenes with the gp on other issues 
Given the meds he is on - you should still get it looked at -
No one wants to go get checked but with crohns and crazy meds it's necessary 
Let us know what the gp says


----------



## goldberry

ok,  that makes sense.  I will see if we can get an appointment tomorrow.  thank you!


----------



## goldberry

Ok,  I have another question:  we have been using a probiotic,  just the CVS house brand once a day.  Do any of you have suggestions for good brands of probiotic?  I'm thinking maybe we should try something different,  in light of this yeast thing.  Which by the way,  has now started in his mouth and we are going to see his primary in a couple hours.


----------



## CarolinAlaska

We used Culturelle when J had c.diff.  It seemed to stave off yeast, even when she was on steroids and antibiotics (two courses of Flagyl followed by IV antibiotics and cephalexin for a blood clot).


----------



## goldberry

Back from seeing our primary,  he said it's not yeast/thrush,  probably a viral throat thing and also he thinks the flagyl was dissolving a little in DS's throat on the way down when swallowing it,  thus causing irritation.  so he wants him to coat his throat with yogurt before swallowing the pills. glad I was wrong and it's not yeast related.  whew!  We are still going to up our game on the probiotics,  to culturelle or something,  just to be sure.


----------



## my little penguin

Ds was on vsl#3 double strength for years ( prescription required )


----------



## LostInNY

goldberry said:


> Ok,  I have another question:  we have been using a probiotic,  just the CVS house brand once a day.  Do any of you have suggestions for good brands of probiotic?  I'm thinking maybe we should try something different,  in light of this yeast thing.  Which by the way,  has now started in his mouth and we are going to see his primary in a couple hours.


My son was seeing a clinical nutritionist and he recommended GutPro. My son took it for a while and it didn't make much of a difference. The nutritionist has Crohn's himself and is very adamant about inactive ingredients in a lot of these pills. There are a lot of products that have ingredients that will cause a flare.


----------



## JTB182

Hello. I am mum to Joe who is 13 and has just been diagnosed with Crohn's after being unwell for the past 10 weeks. He's just come out of hospital and has begun a Modulen diet. He has lost a lot of weight, has inflammation on his shins and swollen ankle joints, mouth ulcers, stomach cramps and diarrhoea. It was a shock to find out it is Crohn's, but also a relief that he has now begun treatment to get it under control. Pleased to have found a place to get support, understanding and advice from other parents who have been through the same.


----------



## pdx

JTB182 said:


> Hello. I am mum to Joe who is 13 and has just been diagnosed with Crohn's after being unwell for the past 10 weeks. He's just come out of hospital and has begun a Modulen diet. He has lost a lot of weight, has inflammation on his shins and swollen ankle joints, mouth ulcers, stomach cramps and diarrhoea. It was a shock to find out it is Crohn's, but also a relief that he has now begun treatment to get it under control. Pleased to have found a place to get support, understanding and advice from other parents who have been through the same.


I'm sorry to hear about your son's diagnosis, but I know exactly what you mean about it being a relief to finally be able to begin treatment.  I hope the Modulen diet works well for your son; my daughter had very good results with EEN--it relieved her stomach cramps and diarrhea in a matter of days, and she gained back a lot of much-needed weight.  In her case, it took almost 6 months for her maintenance medicines to start working well, so we were grateful for the healing and relief provided by EEN in the meantime.  

I hope that your son starts feeling better very soon.


----------



## Mehita

Sorry I haven't been around. DS is doing well, so I've only been lurking and not posting much.

We have been busy visiting colleges and I must admit, I'm VERY nervous.  Not only on the logistics of living in a dorm with limited bathrooms, eating gluten free safely, and figuring out a Remicade schedule, but also things like if he'll notice that he's not eating well or losing weight or looking pale. That's been my job for the last eight years! 

Thankfully, he's only a junior this year and we have two years to figure this all out, but it's pretty overwhelming! It just feels like there are so many pieces to think about. We've only visited the disability office at one school, assuming that other schools would have similar offerings, but we're finding out they're all different. To top things off, aside from the U of MN, the next closest school he's considering is four hours away and then as far as four  states away. This momma is so not ready.


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## Jmrogers4

Oh Mehita, we are so on the same page but since he's a senior we are in the midst of applying for colleges.  We have visited with disability at 2 schools (which are currently his top picks) 1 is 6 hours away through mountain passes (worrisome if we have a bad winter and he gets sick) but the hospital is only blocks from the campus if he can get his infusion there (hopefully) otherwise nearest infusion center is 2 hours away. The other school is only 3 hours away (freeway the whole way) but I haven't found infusion place there yet.  It will be part of the discussion when we meet with his GI next month.  We will also get updated letters for disability office at the colleges/universities.
Luckily he wants to stay in the northwest so farthest school so far is 10 hour drive away


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## Maya142

My daughter has just moved in to college! It is scary to say the least! Thankfully, she is only an hour away from home.

She registered with Disability services and is in an apartment style dorm. So 5 girls sharing a bathroom and kitchen. Having a private bathroom (vs. a large hall bathroom in regular dorms) really helps here. So far, there have been no bathroom issues. 

She is still getting used to doing a lot more in a day and having trouble getting enough calories. It's a work in progress, but I'm sure she will get there.

I've convinced her that I need text updates at least twice a day . She called me on the first two days but now has better, more interesting things to do :lol:.


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## pdx

Maya--so glad to hear that things are going well for your daughter at school.  I'm sure the calorie piece will get easier as she figures out her routines.  

And Mehita and jmRogers--I'd love to hear more about your kids' experiences looking at colleges as the year goes on.


----------



## CarolinAlaska

Jae is a junior this year, but wants to take a gap year after high school, so I'm not sweating the college stuff yet...  I know what you all are feeling though.  My oldest started college 7 hours away this year.


----------



## hockeymom

My son has been in remission since starting Remicade October, 2014. Lately he has stomach pain in the morning on a daily basis. Some days he vomits. We simply don't know what to do. Have done several tests and there are no signs of inflammation, is this still a flare? He started taking a prescription antacid before bed and that keeps him from vomiting but still has lots of pain. Any suggestions for something to help?

__________________
Mom of 15 yr. boy w/Crohn's, Aug. 2014 (age 13)

Current Meds: Remicade


----------



## Jmrogers4

What tests were done?  I know in my son's case inflammation did not show up on "normal tests", FC was good, blood was good, even scopes looked clean, but MRE of small intestine showed tons of inflammation.
What is his current remicade cycle/dosage maybe it can be adjusted to see if it helps. Does it go away after a remicade infusion and come back closer to next dose?


----------



## hockeymom

He has had blood work within normal limits, CT scan was good, MRE was good. He was getting 5mg/kg every 8 weeks, the doctor bumped him up to 10mg/kg which scares me a bit. It helped for about 2 weeks and now he's back to having pain.


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## Crohnsandaspiemom

hi, my 19 yr old son Liam was diagnosed in Dec 2015, has aggressive Crohn's that has caused over 100 pound weight loss so far. He has a fistula in his rectum and degenerative disc disease in his hips and spine.

 He also has Asperger's which makes everything twice as hard because he doesn't understand why he needs to do anything he is being asked to do: The Crohn's has spread everywhere but his large intestine but think we may just be biding our time there. 

But, good news is he is on Methotrexate 25mg a week and Humira so fingers crossed we may see some improvement. But he is very reluctant to go out, due to embarrassment over accidents.

just so glad to have found this forum, it is so good to know you are not alone.


----------



## Katrina9

My daughter is finally in remission from symptoms, now on remicade and Methotrexate. However, she complains of belly pain every day, fatigue and some nausea. Her GI doc thinks it is IBS on top of the IBD. :-( We are trying Elevil at night; not sure this is working - it can take a few weeks to kick in.  Also, she prescribed Bentyl but we haven't used it much. It's an anti-spasmodic also for iBS - but it doesn't seem like she has spasms; I'm not sure.

It's also challenging as there are emotional issues and it's nearly impossible to figure out what is what at this point!

Good luck with your son.

K


----------



## pdx

Katrina9 said:


> My daughter is finally in remission from symptoms, now on remicade and Methotrexate. However, she complains of belly pain every day, fatigue and some nausea. Her GI doc thinks it is IBS on top of the IBD. :-( We are trying Elevil at night; not sure this is working - it can take a few weeks to kick in.  Also, she prescribed Bentyl but we haven't used it much. It's an anti-spasmodic also for iBS - but it doesn't seem like she has spasms; I'm not sure.
> 
> It's also challenging as there are emotional issues and it's nearly impossible to figure out what is what at this point!
> 
> 
> K


Has your daughter's doctor done enough testing to rule out an IBD flare?  So sorry that she's still dealing with all these symptoms.


----------



## pdx

hockeymom said:


> He has had blood work within normal limits, CT scan was good, MRE was good. He was getting 5mg/kg every 8 weeks, the doctor bumped him up to 10mg/kg which scares me a bit. It helped for about 2 weeks and now he's back to having pain.


How is he doing this week, hockeymom?


----------



## cassiep

Hi all im new here, my son is 16 with CD. He has had 2 fistulas and one seton ring which was recently removed. we live in Brisbane but see Prof Borody in Sydney. He has been on antimap now for 10 months and this is the first time since diagnosis that his bloods are in full remission and perfect. He is on 4 antibiotics a day14 tablets a day, vit d3, scd diet and ldn as well. had limited success with cbd in the past. He was depressed but is now working and doing a diploma in youth work is a different child.


----------



## CarolinAlaska

cassiep said:


> Hi all im new here, my son is 16 with CD. He has had 2 fistulas and one seton ring which was recently removed. we live in Brisbane but see Prof Borody in Sydney. He has been on antimap now for 10 months and this is the first time since diagnosis that his bloods are in full remission and perfect. He is on 4 antibiotics a day14 tablets a day, vit d3, scd diet and ldn as well. had limited success with cbd in the past. He was depressed but is now working and doing a diploma in youth work is a different child.


Thanks for the encouraging word.


----------



## Lark28

JTB182 said:


> Hello. I am mum to Joe who is 13 and has just been diagnosed with Crohn's after being unwell for the past 10 weeks. He's just come out of hospital and has begun a Modulen diet. He has lost a lot of weight, has inflammation on his shins and swollen ankle joints, mouth ulcers, stomach cramps and diarrhoea. It was a shock to find out it is Crohn's, but also a relief that he has now begun treatment to get it under control. Pleased to have found a place to get support, understanding and advice from other parents who have been through the same.



So sorry to hear. Our 12 yr old son was just diagnosed in July. It's awful to see our kids go through this. Me.. his mom, I have it too and was diagnosed at 11. Never thought my child would get it too.


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## TysDad

Good morning everyone,

Our son (age 13) was recently diagnosed with CD.  He had developed a perianal abscess which was drained via surgery at the local ER.  All went relatively well.  After a series of tests, an endoscopy and colonoscopy with biopsies, it is a near certainty that CD is the culprit.  

We are currently researching treatment options, even though the Ped-GI doc wants to go with Remicade right out of the gate.  He indicated he observed inflammation along the entire GI tract and a small fistula at the ileum, during the scoping process.  Any idea why the doc would go right to Remicade and not even mention other options?  Our son is currently on 500mgs Flagyl 2xd and supplementing his low amount of food intake with Ensure and Peptamen Jr.

Our sons is small for his age, underweight and possibly puberty delayed, probably due to malabsorption.  We are looking for guidance from some of you, more experienced, parents.  Thank you, in advance.


----------



## Clash

Remicade has done better than lower tier drugs when dealing with fistulizing crohns disease. Fistulizing disease is considered severe.

Since kids tend to have more aggressive forms of CD and are in their growth period it is important to get the disease under control quickly so normal growth can occur.

Tagging my little penguin and maya142


----------



## Maya142

I responded on his other thread and tagged you Clash .


----------



## my little penguin

My kiddo stated remicade at age 8
And switched to humira at age 9 due to allergic reactions 

He tried all lower drugs but his disease was mild on his colonoscopy at dx 
Biopsies suggested moderate but no ulcers or fistulas etc...
I can say biologics had the least amount of side effects and the list benefits for my kiddo 
No wants to believe how bad it can get or what their insides look like
If it was on the outside for all to see it would be easier 

Starting biologics was the best thing for my kiddo 
He is now13 and his GI tract looks pristine .

As far as risk 
Tylenol and abx have risk of liver failure ,Steven Johnson syndrome and even death but we give those every day to infants since the benefit far outweighs the risks 

Risk of T cell lymphoma is when a child takes or has taken both 
6-mp/aza with a biologics 
That risk is 6 in 10000
The average person  on the street without ibd has a risk of 2 in 10000


To put it all in perspective 
Risk wise

Death risk for kids under age 14 in US

By car 1 in 250
By drowning 1in 1000

So we takes risks everyday but the benefits far outweigh 
The risks 

When a doc prescribes a med it's because they feel the benefits far outweigh the risks


T cell lymphoma is less of risk if the child is only on biologics without having tried immunosuppressants 


I know it's hard 
It took a long time to come to grips with how serious this disease really is and that meds are needed 
Also that the meds seem very scary but getting things under control and having a happy hero wing kid makes it all worth it


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## TysDad

Thank you all for the replies.  Wasn't sure where best to post, so I placed my questions in a couple of threads, then decided to just create my own.  It does seem as if "biologics" such as Remicade are most effective and generally bring about remission more quickly.  I believe the dr wants to get things under control quickly, so as to avoid further complications and possible surgery.


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## Amelia hamilton

CarolinAlaska said:


> Thanks for the encouraging word.


Thank you and bless you for the information they started my son immediately on the Remicade also unfortunately yesterday I had such a bad reaction I guess that's why humira  is next. Sorry to ask but when you say Sorry to ask but when you say cbd. Do you mean the medical THC? I was curious about that


----------



## Amelia hamilton

Amelia hamilton said:


> Thank you and bless you for the information they started my son immediately on the Remicade also unfortunately yesterday I had such a bad reaction I guess that's why humira  is next. Sorry to ask but when you say Sorry to ask but when you say cbd. Do you mean the medical THC? I was curious about that


Oh and I guess also yes they started him immediately on Remicade unfortunately he cannot take I wasn't sure if it was because of insurance or because it was the best medicine but now they're pushing for Humira.   I've been divorced for 10 years and my ex-husband has primary custody he and is not the most friendly and I received very little information although this has just happened and I have an appointment with his doctor myself the last few nights have been rough    Lack of information is fair my son is strong in our family has faith we can make it through this as long as I believe in what we're doing in some positive testimony, CBD was something I was curious about    If it's the same thing I'm thinking about which was just passed here in Florida


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## CarolinAlaska

Amelia hamilton said:


> Thank you and bless you for the information they started my son immediately on the Remicade also unfortunately yesterday I had such a bad reaction I guess that's why humira  is next. Sorry to ask but when you say Sorry to ask but when you say cbd. Do you mean the medical THC? I was curious about that


Cassiep, I think you referred to cbd...


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## Mehita

Is there anyone from Indiana here? Looking for info on hospitals and infusion clinics near Purdue...

Or maybe a better question, how does one go about finding a hospital/infusion clinic in cities you're not familiar with?


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## Jmrogers4

Is he interested in college there?  I'm in the process of doing the same thing but then Jack's made a college decision so now I'm trying to get the medical all in order.  Luckily he chose in-state so we have an appt. with GI on the 6th so I was going to ask him along with all the papers I have for him to sign (release from disability office, letter to disability office, letter about housing, crohn's scholarship papers).  I think probably a call to insurance also.  You know me I want to have everything set as soon as possible my own little control issues with this disease since I can't control anything else


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## Mehita

I'll email you, Jacqui. I'd love to know how you're going about all this. He has an appt with his GI in a couple weeks and we have lots of college questions for him! 

Glad to hear J made a decision!


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## kimmidwife

We started a Facebook group for us parents who are dealing with kids transitioning to adulthood and college. I want to invite you all to join us,

https://www.facebook.com/groups/1470097109683916/


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## Katrina9

I wanted to post an update; I haven't posted on here for awhile.

DD is 16 and in 11th grade and her IBD has been pretty treatment resistant. She's now on Remicade, MTX and Uceris and may be making a change; we're waiting on the remicade levels. She has consistently had a lot of morning pain and nausea and episodic flaring. We had difficulty with her school district - we had a 504 that didn't go far enough and then they fought us on an IEP and we had to hire lawyers to get one.  In any case, it became apparent she would do better in another setting and she is doing great in cyber school. She's still connected to friends through social and volunteer activities when she's well. She even went to her (former) high school prom!

What we thought was her latest flare turned out to be c diff and she is now on vancomycin.  :stinks:

She is starting to look at colleges and knows that one of the criteria needs to be access to a top-notch hospital.

This continues to be a roller-coaster and it would just be great to get her onto meds that keep her in remission!


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## pdx

Thanks for the update--sounds like things haven't been easy this year.  I'm sorry to hear about the flaring and c diff, and also about your difficulties with her school.  Glad to hear that the online school is working out, and I really hope you can find a treatment that works well for her.  Hope that the c diff is gone soon too.  Hang in there!


----------



## Jmrogers4

Thanks for updating Katrina9, the college search can be a little trickier with IBD my son is about to graduate from high school in 2 months (UGH! can't quite believe it) and we certainly checked hospital location and talked to the disability offices at each one.  He has made his college choice in fact we go out for early registration and to pick classes in a week.  We will also be visiting the hospital where he will receive his infusions.  It's an 8 minute bus ride from campus and the bus leaves every 1/2 hour.  While it wasn't the deciding factor in choosing a college we did cross some off the list due to greater difficulty in getting to an infusion location.
I've talked to a GI office out there, though he will continue to see his GI here in town (college is 3 hours away).  We will just schedule check up appointments during school breaks but he is good to go at the GI office in town for emergencies. 
It's an exciting time but I have to say his two top choices were because how helpful the people in the disability office were I guess he figured if he really had problems they would be easier to work with than the one that kind of blew us off and basically said if you decide to go here than we will set up a meeting.
Good luck in the college search and glad the cyber school is working out for her.


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## Faithsg

Katrina9 my son is in 6th grade and has missed 3 months of school. I'm curious if this happened in high school how on-line/cyber school can work with College applications and choices. Right now my son has a 504 and they send the work via friends or computer he keeps up the best he can, but it is stressful. He is on remicade monthly methotrexate and uceris and just came up with a high calprotection level. His pain has been so bad at times he can't walk and nothing has worked he's also been seen by pain clinic. I appreciate advice on cyber school in case we need it in the future even though I pray daily he will not have this pain forever. Thanks in advance for your help!


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## my little penguin

Has he been on een(formula only -no food)
It is as effective as steriods without the side effects
Some use an ng tube 
Others like my kiddo drink it orally 

Ds is 13 and just started a 8 week course last week

Good luck


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## Katrina9

I'm so sorry your son is experiencing pain and hope his docs can find something to help.

My daughter was diagnosed at the beginning of 10th grade and missed 90 of 180 instructional days that year. We did the best we could with her 504 plan. She managed to finish 3 courses with a B average, after dropping two classes. While some of her individual teachers were helpful and sympathetic, we had a very difficult time with members of the school and district administration (including the nurse) who questioned why we couldn't just make her go to school by 7:20 AM everyday.  Their focus was getting her to show up - even if she went home after that - so they could count her as having attended.  If she wasn't there, we had to provide a signed doctor's note for each day she missed or was late.

By the beginning of 11th grade we did not see any other option than cyber school because it was clear that our daughter was still not in remission and was going to continue to miss a lot of school, so, even with the accommodations the school provided - and we paid lawyers to help us secure a more rigorous IEP - she was not going to be able to get an education or keep up.

I'm so glad we made the change. She can sleep in, get up and do all her work - it usually takes her 3-4 hours (and then there isn't homework) - and interact with her teachers in real time.  She is getting A's in six classes, including Honors.  She will take one class this summer and be on track to fulfill all her HS requirements.  She can do work from the hospital - if she is there for an infusion or is inpatient.

She attends a state approved cyber charter school so it is a free education.  Working with them on the 504 was very easy and was accomplished in a 20 minute meeting.

Regarding college, I know that the graduating classes from this school attend good colleges. Students go this cyber school for many reasons - including physical and emotional health - and also because some are competitive athletes and performers who need the flexible schedule.

My daughter will be applying to colleges in the fall and so we are hoping that attending a cyber school in no way hinders her. She is taking honors classes and next year plans to take AP courses as well. For us, this has been a really great option.

While I am finally quite clear that my daughter's symptoms - pain, nausea - and worse when she flares - are due to the IBD - I know that the stress of being at war with the school - and us at times pushing her to go when she was ill just to appease them - could not have helped her.

Feel free to message me if I can answer any other questions.

Kathy




Faithsg said:


> Katrina9 my son is in 6th grade and has missed 3 months of school. I'm curious if this happened in high school how on-line/cyber school can work with College applications and choices. Right now my son has a 504 and they send the work via friends or computer he keeps up the best he can, but it is stressful. He is on remicade monthly methotrexate and uceris and just came up with a high calprotection level. His pain has been so bad at times he can't walk and nothing has worked he's also been seen by pain clinic. I appreciate advice on cyber school in case we need it in the future even though I pray daily he will not have this pain forever. Thanks in advance for your help!


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## Faithsg

Thank you so much!  It good to know the options.  I pray every day my son is in school or on the baseball field because then I will know he's not in pain.  He's getting an endoscopy and sigmoidoscopy Thursday so hopefully we will get answers.  He's so sad and angry at this pain it's so hard to deal with he's now on month four of no school. I am getting sick over this too because we've been to the doctor he's on all these meds and the pain clinic and no resolution.  Every time they try to say it's not fully real pain or something not sure they find something else.  He's so depressed won't see his friends too much.  Just so sad.  I hope your daughter is doing well.


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## Maya142

Is your son seeing a psychologist Faithsg? If his scopes don't show anything, then it might be worth also looking into one of the pediatric pain programs. They have inpatient programs for kids with chronic pain that are just in so much pain that they're unable to function. My daughter did one and it really changed her life.


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## Katrina9

Let us know how things are going with your son.  I do hope he can find some relief.

K





Faithsg said:


> Thank you so much!  It good to know the options.  I pray every day my son is in school or on the baseball field because then I will know he's not in pain.  He's getting an endoscopy and sigmoidoscopy Thursday so hopefully we will get answers.  He's so sad and angry at this pain it's so hard to deal with he's now on month four of no school. I am getting sick over this too because we've been to the doctor he's on all these meds and the pain clinic and no resolution.  Every time they try to say it's not fully real pain or something not sure they find something else.  He's so depressed won't see his friends too much.  Just so sad.  I hope your daughter is doing well.


----------



## Faithsg

My son was been seen by the pain clinic two weeks ago and they felt that his crohns wasn't resolved and he has EOE not quite resolved.  They gave him meds which haven't worked yet and some physical therapy home program and a tens machine.  He was scoped yesterday and it was an endoscopy and sigmoidoscopy the area of inflammation was still inflamed the ten to 15 inched from the rectum up in the sigmoid colon, we don't have final biopsy results but that area did not look better in fact it looked worse to me which means the uceris didn't work.  The remicade and methotrexate are not hitting that area.  My son is very resistant to trying a rectal steroid but that may be the next route.  There was also an area of the stomach which looked weird, but we won't know anything for sure until the biopsies come in.  My son is very sad and depressed from being out of school, sports and he won't see friends or go many places.  The worse he gets I understand his feelings we are constantly getting medicine and procedures and seems like nothing works are all.  I am really sad too this child was happy and in remission from summer until the new year.  He was running around playing sports having sleepovers and riding a bike now it hurts when he walks a lot and the thought of walking around school seems hard for him.  This area of inflammation causes him so much pain all the time he can't function.  Thanks for your help and support! Any thoughts on helping this specific area of the colon it seems like a hard to treat area.


----------



## Maya142

My kiddo was REALLY against enemas and suppositories. She finally agreed after a LOT of arguing - mostly because she had painful bleeding fissures and each BM was torture.  She was put on hydrocortisone suppositories, which worked in less than a week!! It was like magic!

She has also done hydrocortisone enemas in the past, which also worked very well.

It might help to have his GI to tell him how much they will help. Also point out that if he wants the pain to get better, he will have to use the prescribed treatment! 

It is very tough with teenagers - they think they know best. Sending hugs!


----------



## tracyelwell

Hi everyone, we live in London and my daughter is 12 years old, will be 13 in May and she is currently having a number of tests to see what is going on.  Booked in for an Endoscopy and Colonscopy.

She started to have stomach pain in January 2017 and they said she had pulled a stomach muscle as she dances alot, but it did not get better.

So after several blood tests and visits to the GP, she was asked to do a stool sample, it was then I discovered that she had very soft stools with blood which she commented she thought was quite normal and it had been like that for around 2/3 months.

When we sat her down and spoke with her, she explained that: -

- Her stomach pain was constant with bad cramps
- Her mouth was hurting and on looking she had sores on the back of tongue and throat
- She was bloated

We went straight to the doctors on the first working day and was immediately sent to see a consultant that day who referred her to Royal London (Barts) and we see the consultant this week after a 1 week wait.

She now goes in, in May for the tests but although she has not ruled anything out she is leaning towards an IBS with an allergy and maybe polyps in the bowel causing the bleeding.


----------



## my little penguin

Ibs does not cause bleeding 
Ibs does not do damage
Ibd does cause bleeding and diarrhea


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## tracyelwell

She said that the bleeding could be the polyps in the bowel bleeding.  I am not convinced but I will wait to after the test results.


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## mvond5

Anyone on Pentasa?  I am wondering what suppliments I should put my 18 son on the ease the side effects. He had Crohn's since 2011 and has done fine with diet. But he will be going off to college and we think it may be time to put him on medicine. More to the story but dont want to be too wordie. So any suggestions on the vitamins?


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## my little penguin

Pentasa is NOT approved as a monotherapy for Crohns
It only treats the top layer on the intestine 
Crohns affects through all layers 
Most GI equate pentasa to giving aspirin for a brain tumor 
Not going to hurt too much but not going to help either 

What side effects does your child have on pentasa ?
The list of POSSIBLE side effects are just possible not probable 

Ds took it and it did absolutely nothing


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## Maya142

My daughter had no side effects with Pentasa. But it didn't really help either - when we discontinued it, absolutely nothing happened.

Generally immunomodulators or biologics are necessary to control Crohn's. Pentasa and other 5-ASAs work in UC, but not in Crohn's because in Crohn's the inflammation is "transmural" - through all the layers of the intestine. In UC, it's just the top layer, so 5-ASAs sometimes work.


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## AllGood

Hello! I am new to this group. My daughter (12) was just diagnosed with Crohn's and we are still figuring things out. Can anyone recommend a good pediatric gastro-enterologist in Palm Beach County, FL?


----------



## Lark28

tracyelwell said:


> Hi everyone, we live in London and my daughter is 12 years old, will be 13 in May and she is currently having a number of tests to see what is going on.  Booked in for an Endoscopy and Colonscopy.
> 
> She started to have stomach pain in January 2017 and they said she had pulled a stomach muscle as she dances alot, but it did not get better.
> 
> So after several blood tests and visits to the GP, she was asked to do a stool sample, it was then I discovered that she had very soft stools with blood which she commented she thought was quite normal and it had been like that for around 2/3 months.
> 
> When we sat her down and spoke with her, she explained that: -
> 
> - Her stomach pain was constant with bad cramps
> - Her mouth was hurting and on looking she had sores on the back of tongue and throat
> - She was bloated
> 
> We went straight to the doctors on the first working day and was immediately sent to see a consultant that day who referred her to Royal London (Barts) and we see the consultant this week after a 1 week wait.
> 
> She now goes in, in May for the tests but although she has not ruled anything out she is leaning towards an IBS with an allergy and maybe polyps in the bowel causing the bleeding.


My son is 13 and was diagnosed w Crohns a year ago. Did you find out what it was?


----------



## Toots

16 year old daughter Diagnosed one month ago
Ulceration right side colon no other invasion 
Ulcers in oesophagus.low iron levels ,severe pain 
Please help doc say Panadol till meds  kick in 
Very depressed she is crying heap


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## Maya142

Hi and welcome Toots. Is she on any other meds? Steroids? Those should help with the pain. Has she started a maintenance medication - for example, something like Azathioprine or 6MP?

A formula only diet (EEN) can also help a lot with the pain. I will tag some other parents:
my little penguin
pdx
Farmwife
Tesscorm
Clash
Pilgrim


----------



## pdx

AllGood said:


> Hello! I am new to this group. My daughter (12) was just diagnosed with Crohn's and we are still figuring things out. Can anyone recommend a good pediatric gastro-enterologist in Palm Beach County, FL?


Hi there, and welcome. I know we have a few members from Florida, but I don't know what county they're in. You may want to start a new thread with your question so that it stands out more. Also, if you have a local chapter of the CCFA (Crohn's and Colitis Foundation), they may be able to connect you with some local families who can give you more advice about local doctors.  

How is your daughter doing right now? My daughter was also diagnosed at 12; she's 15 now and doing pretty well.


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## pdx

Toots said:


> 16 year old daughter Diagnosed one month ago
> Ulceration right side colon no other invasion
> Ulcers in oesophagus.low iron levels ,severe pain
> Please help doc say Panadol till meds  kick in
> Very depressed she is crying heap


Sorry that your daughter is so much pain. As Maya mentioned above, EEN can help a lot with pain while you wait for other meds to work. My daughter was on EEN for about 2 months, and her severe abdominal pain subsided within a few days of starting. My daughter was very opposed to the idea of trying it at first (especially since she used an NG-tube), but it turned out to be easier than she thought it would be.  

Good luck. Hope she feels better very soon.


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## Maya142

> 16 year old daughter Diagnosed one month ago
> Ulceration right side colon no other invasion
> Ulcers in oesophagus.low iron levels ,severe pain
> Please help doc say Panadol till meds kick in
> Very depressed she is crying heap


I wanted to add - if you make your own thread on the Parents' forum, you are likely to get more responses.


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## #sam's mom

HI, I am new to the forum. My 12 year old son was diagnosed with fistulizing crohn's 3 years ago. He was on Remicade every 6 weeks for 1 1/2 years but unfortunately it was not the magic treatment it is for so many, but he felt pretty good. When the fistula had not closed the GI took him off and tried Humira (on which he was so sick! high fevers and severe crohns symptoms) then 6mp (again no relief and sick all of the time) doctor put him back on Remicade (thankfully he had not developed antibodies) and he has been on it at maximum dose every 4 weeks and methotrexate and folic acid for a year. Not only has his fistula not healed, a recent MRI reveals a small second fistula. Overall we are VERY thankful that he feels good most of the time despite his disease being so bad - he leads a normal and full life! All of his inflammatory markers always remain extremely elevated. Every year we see the surgeon about a possible Seton but he says since the fistula is not draining or bothering him the surgery could be more painful and if we could just get him into remission the fistula would heal.

He has a colonscopy this Thursday and his GI is pushing to change medication. She wants to combine 6mp and the Remicade, which we won't do because of the heightened risk of cancer in pediatric boys so her second choice is Stelara or Entyvio. We are VERY reluctant to switch because at least on Remicade he has maintained a good quality of life (able to attend school and play some sports and perform in acting/plays) even though the disease is not under control. Based on how sick he was off Remicade 70% relief seems better than the other possibility. We are also concerned because Stelara and Entyvio have not yet been approved for use in pediatric and thus the risks are not known. (let alone the possible costs) Please respond if any of you or your children have had similar experiences or have switched from Remicade to Stelara or Entyvio? THanks, #Sam's mom .


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## pdx

Deleted because I didn't realized there was another post with the same question.  I moved my reply there!


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## susangrant

it must suck being a 17 year old with a chronic illness...
but he seems to be handling it better than me and my husband. 

I'm glad to be part of this chat for added supports. 

thank you


My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds, 
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response. 
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods. 

its all confusing


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## Jmrogers4

Hey Susan, I just responded to you in another post.  Welcome :rosette2::bigwave:


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## crohnsinct

me to!


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## Mom2Eli

Hello everyone! 
I am a newbie with an undiagnosed 11yo. I am a wreck over the evening call we got a week and a half ago with his alarming inflammation test score. He is scheduled for his first endoscopy and colonoscopy in mid-April. They are expecting UC, Crohn's, or unlikely but possible a eosinophilic condition. My son has had life long eczema, food allergies, asthma, and hives from environmental things. We dealt with mild adhd turning into a real problem in 5th grade when he developed OCD. And for the past year a host of digestive troubles that have lead us to where we are now. 
I am sure you have all been here for the wait. Wait to see what he may have, wait to see if there is improvement.  I am feeling so overwhelmed. We have a distant family history of ulcerative colitis, both dh's grandmothers and my grandfather. 
We are also waiting for allergy test results. But those do not highlight digestive eosinophilic respsonses just more things we will have to watch for. Currently he avoids shellfish and peas. 
Anyway. I am happy to join here. This is a tough age group to deal with differences. He has been lammenting a lot about having to go to the bathroom at school twice a day for 20 min or more.


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## pdx

Yes, the waiting is so hard! My daughter started having digestive symptoms at age 11 too, and it took us almost a year to get a diagnosis, and that was only after she got really sick. I hope that your son's condition stays stable until April, and that the scopes give you some answers. You may also want to ask about some kind of imaging for his small intestine, such as an MRE or pillcam, since sometimes Crohn's only shows up there.

Hang in there!


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## GabesMom

Welcome, @Mom2Eli. My son had been showing symptoms over the years and had the flare that brought us to a diagnosis 2.5 yrs ago at age 11. He was on a low residue diet until he achieved remission with Remicade for severe ilial Crohn's. 

Hang in there, and manage the best you can. That includes everyone's mental health. It's terrible to have a suffering kiddo but thankfully IBD itself isn't fatal, so until you get the right diagnosis and treatment, the key is getting them nutrition, and balancing giving them emotional comfort and helping them learn resilience.


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