Parents of Pre-Teens and Teens with IBD

Crohn's Disease Forum

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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.
 
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.
 
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.
 
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 ?????
 
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
 
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.
 
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!
 
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.
 
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
 
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 :)
 
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
 
Mehita said:
Do any of your kids have boyfriends or girlfriends? Have they told them about their disease?
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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
 
Mehita said:
For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?
Click to expand...

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.
 
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)!
 
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!
 
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?
 
Mehita said:
For those of you with older teens... how did you know the difference between normal teenage growing fatigue and IBD fatigue?
Click to expand...

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. :)
 
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...
 
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.
 
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, 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!
 
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 .
 
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...
 
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!
 
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.
 
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.
 
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.
 
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.
Click to expand...

Yes, my daughter does, and it has been quite helpful.
 
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.
 
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
 
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.
 
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.
 
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:
 
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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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
 
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
 
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
 
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
 
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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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.
 
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.
 
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
 
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.
 
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.
 
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.
 
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.
.
 
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.
 
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.
 
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, 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.
 
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....
 
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!
 
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.
 
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!
 
^^^ 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
 
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.
 
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.
 
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!
 
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.
 
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.
 
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 .
 
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.
 
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!
 
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.
 
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
 
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
 
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
 
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
 
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.
 
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
 
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?
 
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...
 
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!
 
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.
 
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.
 
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 .
 
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!

.
 
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!
 
Whoo hoo! Muscles
arm_test_copy_by_doodley-d7iw003.gif
 
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:
 
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!
 
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 :(
 
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 :)
 

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