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My 9 year olds going for 1st infusion this Wednesday

S

Saphira

Hi everyone, Thank goodness for this forum. My 9 year old is going to get Remicaid on Wednesday. I'm a little nervous. He was diagnosed with Crohns at 7 years old and was fine on Asacol and Omeprazole. Then had a flare at Thanksgiving. We had to see a new Doc. He says IBD but won't confirm crohns, (prometheus test was not positive for CD or UC). ANyway after seeing highly inflammed ileum on colonoscopy, he went on Entocort. Responded well, but symptoms began to return when we decreased dose. Ended up on Prednisone about 5 weeks ago 40mg/day. Been trying to wean him from it, but every time we drop below 30mg symptoms return. This week along with D 10 times a day he had sever pain and blood in vomit. We decided to try Remicaid, he goes on Wednesday, if insurance (Humana) will pay.
I'm am unnerved because the diagnosis is not definately crohn's according to this Doc but they are treating it as crohn's anyway.

Have any young children had Remicade. I just want him to be well enough to get back to school, he hasn't stayed an entire week at school since Nov. And hopefully if we can get off steriods we can sleep more than 4 hours a night (It's like having a new born again!!)

Any advice for parents?
Trina
 
C

Crohn's 35

Inactive Account
Hi there, so far on the forum (that I have read) no child has been on Remicade that young, and I am surprised especially when they haven't confirmed Crohns diagnosis. Steroidsa are best to be avoided. Just thought Humira would of been the first choice. But hey what do I know. Good luck with his infusion, let us know how he makes out.
 
K

Kat

Location
Michigan
Hi my daughter is 14 years old and was diagnosed with Crohn's late December 2010. When first diagnosed she was on Prednisone for about 10 weeks, Pentasa and also started Remicade infusions. So far so good, she is in remission and the Remicade infusions have not been bad. We give her tylenol and benedryl about 30 minutes prior to the infusion. The first couple she was a little restless and now she just relaxes, watches a movie and usually takes a nap. No side effects for her. Good Luck!
 
DustyKat

DustyKat

Super Moderator
Hi Trina,

We don't have any experience with Remicade at our place but I want to wish your son all the luck in the world and hope it does the trick! Good luck for tomorrow hun......

:goodluck::goodluck::goodluck:

Maybe post this question in the parents forum, I'm sure there are kids there that have been on biologics??

http://www.crohnsforum.com/forumdisplay.php?f=49

Take care, :hug:
Dusty
 
S

Saphira

We are in the hotel!! It's a 2.5 hour drive and we didn't fancy getting up at 4:30am. Tomorrow is Brandon's 1st Remicade day!
Trina
 
G

G's mom

Good luck to both of you tomorrow. It looks like my son (12) will be starting Remicade soon. Let us know how everything goes.

Take care,
Vicky
 
Mountaingem

Mountaingem

Wow, really strange situation with your son, poor little guy! With an inflamed ilieum he should have definite diagnosis, in my humble opinion, paired with what happens when he tapers off steroids.

I wish you and your son the best, the only thing I can say is steroids are every bit as scary long-term as Remicade.

I get my infusion tomorrow too- a double dose as I'm flaring. Best wishes on the infusion and I hope you get answers and your son improves very soon with the Remicade. It worked wonders for me!
 
S

Saphira

It went great. Brandon had his unfusion it only took two and a half hours. stayed stable throughout, didnt do Benadryl or tylenol. He said his pain has dropped to a 2, it hasn't been below a 6 for months!!! He's hungry and tired. Fingers crossed!! I hope yours went well Jeanette and Goodluck Vicky.

And yes Jeanette, I agree he should have an official CD diagnosis. I do have it on one paper from the first Doctor from 2 years ago, and thats the one I used for his 504 plan at school.
Trina
 
G

G's mom

So glad it went well. Sounds like it went smooth, and quick. I hope he keeps feeling better. How are you doing? Hopefully you both will have a very restful night.

Take care,
Vicky
 
S

Saphira

Brandon's been complaining of a bad headache, since the infusion. Is this normal?. The abdo pain is still around a 2 Woo Hoo!
Trina
 
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