Community Forum

My 13-year-old daughter was recently "diagnosed" with Crohn's disease. I put diagnosed in quotes because even though we are moving forward with a treatment plan for Crohn's, we were told the results of the biopsy were inconsistent and sent to a specialist with the University of Chicago (who we have not heard back from in over a month). However, all other tests and symptoms are presenting as a classic case of Crohn's. Proceeding with a maintenance plan on this information has had me biting my nails, but from what I'm reading - it sounds like this seems to happen a lot.

My real question is - 13 is a rough age as it is, plus I am a recently divorced single-mother on her own and moved to a new area - so my poor daughter has had new school woes, new family woes... and now this. Her anxiety and emotions are off the charts, and I am having a very difficult time getting her to go to school. Sometimes for good reason... panic attacks, high fevers, ear infections, stomach symptoms, etc. But now the school year is almost over, and she is basically begging me to put her in the hospital so she doesn't have to worry about school, tests, projects, etc. While currently on prednisone (and about to start 6MP), she has been catching colds and infections so easily, so she's missed a ton of school already between that and Crohn's symptoms. How do parents handle this? When is it okay to push a child with a chronic illness like this and when is it time to give them a break? Walking this line (and of course getting constant input from friends on family about what I should or shouldn't be doing) has nearly broken me.

Also, once they are on the immuno-suppresant drugs, how often do common cold or infections keep them home on top of the flares? I'm very nervous about making the wrong calls and setting her education or health back because of it.

 Reply posted for lgriffith42.

I can relate to so much of what you all are going through. My 15 year old daughter was diagnosed this year, at the begining of 9th grade and missed so much of her school year and got so far behind even with a 504 plan and accommodations that 9th grade is a total loss for her. I have no idea how to proceed next year with school. She was on Apriso and that worked to ease her symptoms only for about 3 months. Even then she was still feeling exhausted with a few bad days a week. We recently added Uceris to her Meds. That worked but, its not something she can take forever. Her doctor has just put her on 6 mp. While Im very worried about the side effects - my daughter doesnt care anymore- she just wants to feel better. I am totally torn about school for her. I dont think she can deal with a regular school but I would hate to take her out and have her lose all her social life. This is a very challenging disease. School ways heavy on my mind --- the balance of keeping her stress low and seeing her succesful and happy too. I'm concerned that the 6mp will make her even more lethargic and susceptible to colds than she already seems to be. 😩 It's all so stressful.

My 11 year old daughter was also diagnosed recently (may).  She missed 35 days of school this year but we are not worrying about it right now-- fractions will be there when we get back.  That said, 13 (grade 8?) is a big year.  I would hope open discussion with school and teachers would help.    

My daughter has just started azathioprine (IMURAN)  and we will see if it works.  She has been on exclusive tube feeding via a nasalgastric tube since mid-may and will remain on it until end of july.  It has been a bit hard, she has worn the pump and the tube to school but has recently learned how to take it out and put it in herself so that she does not have to wear it in public if she doesnt want to.  She is gaining weight and her inflammatory markers (CRP, ESR) are down.  We are happy to take a steroid sparing approach.    

I agree that the decisions are tough and supporting your child is a challenge.  My own doesnt really like to talk about it when I bring it up but I keep leaving options open or explaining parts of it and then later she will ask for clarification.  

Good luck. 

Sorry to read that your daughter is having challenges with her disease and with school. 

There is help.  Including teen support groups and camp.   It may help your daughter to speak with other teens with IBD.   To find a support group and learn more about Camp Oasis visit http://www.ccfa.org/chapters/ .

We have a number of resources for your child and your family.   Check out

A Guide for Teens with IBD:  http://www.ccfa.org/assets/pdfs/teenguide.pdf
A Guide for Parents: http://www.ccfa.org/assets/pdfs/a-guide-for-parents-2014.pdf
A Guide for Teachers and Other School Personnel:  http://www.ccfa.org/assets/pdfs/teachersguide.pdf 
Pete Learns All about Crohn’s & Colitis:  http://www.ccfa.org/assets/pdfs/pete-learns-all-about-crohns.pdf
IBD & Me Activity Book:  http://www.ccfa.org/assets/pdfs/ibd-me-ac.pdf
Teen Website:  http://www.justlikemeibd.org/?referrer=http://www.ccfa.org/

Hello,
My 17 year old son was diagnosed with Crohn's last month.  His school as been great working with us.  The actually decided last week to just honor his grades where they were for the rest of the year.  The school agreed that the stress he would go through trying to catch up and take his finals wasn't worth it.  So, it may be worth asking your daughters school to do the same.  
I am also frustrated, since we are new to Crohn's.  Good luck to you and your daughter.Thanks for your post. It has been a rough month for us and reading that someone else is going through the same thing is very comforting.

 Reply posted for lgriffith42.

My son is 13 as well.  He was diagnosed 2 years ago and has been on imuran pretty much ever since.  He really hasn't been any more sick than he was before.  Other than a couple of colds perhaps lingering around a little longer, he's been really healthy.  Unfortunately, he has inflammation again so it looks like we will be moving from imuran to perhaps humira.