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Crohn's Disease Forum

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Joined
Jun 30, 2012
Messages
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Hi all,
My precious 12 year old daughter Mikayla was diagnosed with Crohn's in December 2011. After three years of being missed diagnosed. Two colon/endo scopy and Two hospitalizations. The pill camera finally revealed Crohn's in her small intestine. After months of being on Pentasa and Endocort. The symptoms have not improved. The Dr wanted to do another pill camera. Last Friday, she did the pill camera. Two days later we were at the ER with her uncontrollable vomiting and extreme tummy pain. The x-rayed showed the pill camera stuck in her inflamed intestines. It required emergency surgery, where they took out her appendix too. Day two in the hospital was a normal recovery day. Day three she started to have out of control diarrhea/high fever's 103.5 and belly pain. They pulled labs to show that she had C-Difficile......a disease causing bacterium that can infect the large bowel. Highly contagious and causes out of control diarrhea. It is also something that is picked up in a hospital. Double whammy! Day three, still feverishness even though she is on antibiotics for C-Diff. Day 4 still feverishness and chronic diarrhea. They ordered a ct scan which showed that she had an abscess in her belly. She is currently on two antibiotics and we are at day 6 and finally no fevers. Triple whammy, with operation, C-diff and abscess. Today her tummy is bloated and having super strong gas pain. She is exhausted, weak and lathargic.
Once all of this is under control the Dr wants to put her on Remicade. From what I have read in this forum, if sounds like it works.
Looking forward for this website to provide us with support and common stories, so we can all deal with this together.
Blessings,
Mik's Mom
 
Hey miks mam ,
Welcome to the forum ,
Awh it sounds like your brave little lady has been through the wars ;-(
I really hope she's on the mend soon ,
I've no experience with Remicade but it's worked wonders for some here xx
Pass on big get well wishes to your princess
And I know you'll get plenty of support and advice from the guys here
Best wishes and ((((( hugs ))))
Amy ",) x
 
Welcome to the forum Mikayla! :hug:

I'm sorry she's just been getting complication after complication. Her doctors seem to be very on top of it though! Unfortunately, all these complications are the nature of the beast, especially in children. I had a few infusions of Remicade but was immediately taken off for a reaction. A lot of people on the forum have gotten into remission with Remicade & hopefully that will be the case with your daughter!

Do you live in the U.S? If so, Once she's better, you should really look into doing some CCFA events! The Crohn's & Colitis Foundation of America has a lot of events all around the countries & specific events just for kids with Crohn's. I am actually leaving in a few weeks to go to Georgia to be a camp counselor at Camp Oasis, a camp specifically for kids with Crohn's.

http://www.ccfa.org/get-involved/camp-oasis/

Take care & welcome to the forum! :)
 
Hi Mikayla and welcome!

I'm so sorry to hear of your little one :( That must be so incredibly tough for all of you and my heart goes out to your entire family.

*hugs*

In case you haven't seen it, I suggest you setup shop in our Parent's of Kids with IBD forum. The parents in there are absolutely amazing and epitomize the words, "supportive", "compassionate", and "falafel".

Ok, maybe two of three.

Anyway, we're glad you joined and are here for you anytime you need us!
 
Oh the poor lovey, I am sorry to hear she has is having to put up with soo much :( I hope she can be feeling better soon and be out of hospital. The Remi has done such a good job for many here so I will be keeping fingers crossed for your girl.

AB
xx
 

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