Community Forum

Hi, this is my first time on here... I know I am touching on too many topics, so feel free to comment on any of them... I just have A LOT on my mind, as I am sure you all do!

My name is Andrea, and our son, Gavin (age 9) was just diagnosed with moderate to severe Crohns in his stomach, duodenem, and ileum.  He is quite upset and depressed about it, and I think it would be great for him to communicate with kids who are going through similar things.

  He is currently TRYING to take Entocort EC capsules, but is having very limited success with swallowing the capsules.  We even have the Oralflo pill cup

We are intested in EEN (exclusive enteral nutrition), rather than thelong term Imuran that his doctor is suggesting (SCARY side effects, especially because he is only 9!!!)

We are considering homeschooling at this point, partly because his school is not very understanding (they are discouraging us from a 504 plan) and partly because he is so small for his age & has endured bullying.

Any stories, suggestions, advice, or kids who Gavin could email???  Thank you

 

 Reply posted for mom2gavin.

Hi Gavin's Mom,

Our family has been living with CD for 6 years now, and I can relate to a lot of what your family is going through right now.   It is all so overwhelming at first, but things will get easier.  

Ask your pharmacist if the capsules can be opened and taken in something that your son enjoys (yogurt, apple sauce, etc).  My daughter hasn't been on that script so I'm not sure, but she had been on another that came in capsule form when she was 4 and that is what we had to do.  

I would recommend trying EEN, we haven't had the need, but there are lots that have had much success.  At this point, what do you have to lose?  Imuran may not be necessary.  Why not explore other less evasive options first?

As for the school, guess what, it isn't up to them.  It is your son's right under the American's with Disability Act.   He needs to go to school, it is his right and the school district needs to accommodate him (end of story).   It infuriates me hearing the nightmare that some schools put families through.  Don't allow them to get away with it. 

Take care of your little man and yourself (sometimes we forget that).

Be  well.

Lizzies Mom

 Reply posted for dandesmommy.

Hi Leala,

I am new to this too, and have not figured out how to message anyone...

Sorry to hear that Dustin has had a hard time.  I am sure Gavin would love to hear from him, but I guess we are going to have to figure out this site a little more.

Thanks for your reply, and I look forward to talking with you!

 Reply posted for mom2gavin.

Hi Andrea,
 
My name is Leala and my son Dustin is 9 as well.  He was diagnosed with CD when he was 7 and has and is still experiencing many of the same issues as Gavin.  He is very small for his age and has been picked on constantly because of it. 

When he was diagnosed in 2008 his GI Dr. was adamant about putting him on Imuran, which I was not comfortable with.  Having CD myself, I was at one point prescribed Imuran and refused to take it because of the scary side effects.  He was put on Asacol which made him feel icky, and then Pentasa which seemed to work.  Over the last year and a half he has grown MAYBE half an inch (he had a growth spurt while on Prednisone).  Deep down, despite numerous blood tests and stool samples coming back normal, I knew something was wrong.  We have since changed hospitals and after an upper GI, colonoscopy, endoscopy, and finally an MRE, theyve found that about 19 inches of his small intestine is inflamed (the first three tests were normal).  The Pentasa had been doing nothing for him all this time as it dissolves higher up in the GI tract.  He had his first Remicade infusion yesterday and it could not have gone better.  I feel that if his previous doctor had taken the time to address my concerns (which I had expressed to him), I would have kept him on the Imuran for more than two weeks. 

I am sure Dustin would love to connect with Gavin to know know that he is not alone, especially at such a young age.  Feel free to message me and I will give you Dustins email address.  I finally created an account on here and havent figured out how to message people yet, haha!

 Reply posted for mom2gavin.

Hello,