8 year old diagnosed

[Fabi]

my daughter Ella was just diagnosed. Looking back I see signs of the disease from when she was around 6, maybe 5. I am grateful to have a diagnosis as there could be many worse things in life.
She started on prednisone 2 weeks ago and what a difference! I have a happy little girl again. She will be starting Remicade soon and I am not looking forward to the treatments and the $$$.
Anyone else have experience with small children on this medication?

 

[Coltyn'sfamily]

My son Coltyn was diagnosed in October. We're new at this too! He's had asacol, entocort, remicade, pred, flagyl, methotrexate, debating on starting humira. He's 12. He made anti-bodies to the remicade. they decided to take him off. so the next step is humira. methotrexate gave him bloody noses. it's scary to have a child with this. pred is awesome but they cant stay on it forever

 

[Fabi]

So how long did the Remicade work for? How did he feel the day after and how did you know when it wore off?

 

[Coltyn'sfamily]

He was up to the 8 week infusion, so the 0,2,4&6 wk doses then we stopped the day he was supposed to get the 8 week. He was a weird case. He immediately felt great! Then that night took a turn for the worse and ended up in the er the next morning. We thought that it was from his colonoscopy, they had a hard time getting into his illieum and the camera put a bruise on his colon, thought perforation but none. Just a wierd reaction to the remicade. He felt bad for a couple of days then it was fantastic. But he developed RA and drug induced lupus. the remicade worked wonders on his crohn's. But his body fought it so hard that they couldnt keep a high enough dose in him and with all the side effects he encountered they took him off. I really felt like it helped the crohn's. No belly aches, normal stooling. But the RA and Lupus took over and the drs did serum tests and remi level tests and decided he was just that weird case that cant handle it. And we found out quick. they say it normally takes a while to get a reaction, if any.

 

[Tesscorm]

Hi Fabi and Coltyn's Family,

I'm sorry both your children have been diagnosed! It's certainly overwhelming receiving the diagnosis and suddenly making all sort of decisions re the medications! :ybatty:

Unfortunately I can't offer much info re the meds as I have little to no experience with them; my son was diagnosed last May (at 16 years old) and his treatment was Enteral Nutrition (EN). EN has a comparable success rates at inducing remission as steroids and has no side effects. For some reason, while it is commonly used as a treatment option in Europe, Canada and elsewhere, it is not as commonly used in the U.S. I believe it may be an issue of patient compliancy. The treatment involves a time period (usually around 6 weeks) when nutrition is given solely from a nutritional formula (either orally or through an Naso-Gastric tube); after this time period, food is reintroduced.

My son chose to use an NG tube, inserts it at night and ingested his formula overnight. During the day, he was allowed clear fluids such as broth, jello, etc. His maintenance has been 1/2 the dose, 5 nights per week. His only medication so far has been an antacid. It has no side effects and provides all the necessary nutrition. He had lost 20 lbs prior to diagnosis, within 3 months of starting EN, he had gained 30 lbs and has stabilized there.

There's quite a bit of info re EN on the Parents of kids w/IBD subforum as well as in the Treatment subforum. And, please feel free to ask any other questions. There are currently a number of children, close to the age of yours, who have recently or are currently doing EN.

Regarding the medications, there are many supportive and knowledgeable parents on the Parents subforum, many of whom share your concerns regarding the meds - feel free to have a look through the forum.

Good luck to both your children!