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8 year old son diagnosed with severe Crohn's

One week ago today, my 8 year old son was diagnosed with severe Crohn's. He was immediately placed on Prednisolone which is to last for a month after which he switches to Remicade.

Things are happening very fast and because of the shock my wife and I had, we are in a daze and are just following what the doctor is recommending.

Any words on what we should be doing at this stage?
 

kiny

Well-known member
I would try to support him where you can, understand that there will be periods where he will be sick that he can't go to school, try not to put pressure on him if that means he falls a bit behind compared to other kids. Make sure he eats enough so he doesn't lose weight, make sure he tells you if he's in pain so he gets the care he needs.

They call overall wellbeing "Quality of Life" for crohn's disease patients, I think it's important that you don't get depressed early on as a crohn's disease patient, it's no the end of the world, just support him where you can.
 
Hi and welcome TyTy,
We've all been through the shock your speaking of. Take one day at a time and learn as much as you can.
We have a wonderful parents forum here. Please stop by and ask as many questions here as your like.
Here's a link to the Parents Forum

I'm going to tag in Sascot, Tesscorm, Maya142, MLP, Dusty and more from the parents forum will be along.
 

Maya142

Moderator
Staff member
Hi TyTy,
My heart goes out to you. As Farmwife says, the Parents Forum is a wonderful place, and many of the mom's there have kids who were put on Remicade at diagnosis. Remicade is a miracle drug for many kids and though the potential side effects sound scary, once you have your child back, you tend to stop worrying (well, somewhat anyway).
Good luck!
 
Thanks for sharing. I will check out the parents forum. Is there anyone who kids were put on Remicade and it didn't work?
 

Tesscorm

Moderator
Staff member
Welcome to the forum! But, I'm sorry that you've had to search us out. :(

Do pop into the parent's forum - there are supportive, knowledgeable members throughout the forum, however, the 'parents' can also offer the extra understanding that's sometimes needed when it's your child that is sick. :ghug:

Prednisone is typically used to reduce inflammation before beginning a maintenance medication. As far as if remicade can 'fail' - all drugs have the potential to fail and, as you learn more about crohns, you'll see that it is a very individual illness. What works for one person, may not work for another, the dosage or frequency varies from person to person, sometimes a combination of meds is needed, etc. Remicade has proven to be fairly successful and there are many member and kids using it. One thing to keep in mind is that most people who come to a forum are coming because they are having problems, etc., so don't be too alarmed if you read 'remicade isn't working for me' more than once, there are many, many thousands of people out there using remicade with no problems and they are likely not on a forum.

My son has been using remicade for almost a year now and he has not had any problems at all. :)

:ghug:
 
I am appreciative of all the responses even if I do not reply to all. Thanks Tesscorm. I will go to the parents forum
 
Sorry to hear about your son. I hope the Pred works well and he starts to feel better. No experience with Remicade - good luck with it. Diagnosis is a shock, but unfortunately it does become your norm after a little while. My son was 12 when diagnosed and he has coped well with everything. I hope your son responds well to the treatment.
 
Welcome TyTy,
My son just had his first dose of remicade last week, the change for him has been almost immediate. There are so many options for treatment and there have been studies done that show remicade right after diagnosis has some tremendous benefits in long term care. I'll see if I can find the link and post the study for you.
As Kiny says missing school is almost inevitable a 504 plan is a good thing to have in school to help with that.
There is certainly a lot to learn but always trust your gut. Take a poke around the parents sections almost always someone has been there done that and kind provide invaluable support and information. Ask questions, we're always happy to provide what knowledge we have but remember we are not doctors so keep an open dialogue with your son's GI.
Hope the Pred brings the inflammation down quickly and remicade keeps him there for a long time.
 

DJW

Forum Monitor
Hi. Very sorry to hear this news. The early stages are overwhelming. Take it one day at a time. Be patient and check out the parents forum.
 
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