Parents of Pre-Teens and Teens with IBD

Crohn's Disease Forum

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That's really great--both that the other kids were so interested and accepting, and that your daughter felt comfortable sharing.
 
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??
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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
 
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 :)
 
Welcome Toniann
Hope the infliximab is his magic medicine and the next year and many after are free from flares, inflammation, exhaustion and pain.
 
thank you JM, I have 'seen' your posts here and there and I am so grateful for the info everyone shares :)
 
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.
 
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.
 
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
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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?
 
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.
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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).
 
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.
 
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 :)
 
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.
 
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.
 
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!
 
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.
 
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
 
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?
 
: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
 
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.
 
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
 
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!
 
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.
 
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.
 
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 :)
 
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.
 
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 :(.
 
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!
 
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.
 
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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?
 
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.
 
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.
 
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
 
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!
 
What is his current Humira dosage? Like the others have said, he might just need some dose tweaking.
 
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.
 
I am so sorry for the nightmare that you and your children are going through. I'm glad you seem to have competent doctors.
 
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?
 
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?
 
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.
 
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
 
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
 
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.
 
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.
 
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.
 
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.
 
If it did help for a while, I'd guess the 40mg will make a difference soon :ghug:.
 
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
 
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?
Click to expand...



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.
 
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.
 
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
 
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!
 
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
Click to expand...

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

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

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.
 
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.
 
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.
Click to expand...

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.
 
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.
 
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
 
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:.
 
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.
 
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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.
 
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
 
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?
 
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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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.
 
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
 
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
Click to expand...

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.
 

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