Son has Crohns--Remicade?

[Dman7543]

Hello, my son is fifteen years old and has had symptoms since he was about 13 years old. He had to go to the bathroom right after or even during meals, he also had diarrhea and severe abdominal pains at times. About a month ago he had a bowel obstruction. We thought it might have been scar tissue from his appendicitis in third grade. Whatever it was, it corrected itself. With his past history, a new GI doctor wanted to do an endoscopy and a colonoscopy. Following it, she found moderate imflamation in his terminal illiam, and a little in his stomach and colon. The doctor gave him budesinide for now, but wants to start Remicade Infusions AND 6mp. I have a bad feeling about all that medication. Her reasoning is that since hes 15 and only 5 foot 3 and 111 lbs that the crohns has stunted his growth. What do you guys think about the remicade and 6mp.

 

[muppet]

The aggressive approach is more and more common with doctors and I'm told is backed up by research data, so you should definitely give your doctor's advice decent weight.

Personally, I'm a fan of the bottom up approach, which is an older approach in which you start out with less aggressive drugs, like one of the 5-ASAs (Asacol, Colazal, Sulfasalazine..) and see if those are effective (generally these drugs are not considered "enough" for Crohn's anymore, but many patients get good results from them, like me.) If your son didn't respond well enough to those drugs, then he could step up to the Remicade.

The risk of that approach is that low level inflammation may persist on 5-ASA drugs and go unnoticed until his next scope, and that low level inflammation can still potentially cause damage, like strictures and fistula. In my experience, it hasn't happened, but I'm just one example so take my story with a grain of salt.

You might also ask your doctor if Remicade without 6MP is an option, and why or why not. Even with Remicade your son should still be regularly scoped to make sure it's as effective as it ought to be. By and large, Remicade is a very effective drug for a majority of patients and it can even reverse damage suffered from inflammation before starting the drug in some cases, so it's a good option for patients who are likely to have had untreated Crohn's for a long period before diagnosis, like your son.

I hope that wasn't as clear as mud... Welcome to the forum!

EDIT - Oh, and also... make sure to talk to your GI about dietary changes that may be helpful. If he/she tells you diet doesn't matter, I'd suggest finding a new GI. Also consider seeing a dietician. I personally have had great luck with a low-residue, no dairy diet (you can google these terms for information, if you need more direction, feel free to let me know!), but others have had luck with gluten free, modified paleo/keto diets, and the specific carbohydrate diet (this last one is pretty hardcore but there's lots of support for it.) Diet is at least as important with Crohn's as what medication you use.

 

[Earnellzwifey]

Welcome to the forum and sorry to hear that your son has CD. It is hard enough to deal with as an adult but even worse for children. There is a lot of parents on this forum that might be able to give you advice on the effects of those medications on children.

We also have a forum that discusses both of these medications.

I am sorry that I was not able to really answer your question, but I did want to say hi and welcome and I hope that what ever you decide puts your son into remission.

 

[my little penguin]

:hug: My son is also on Remicade alone not with 6-mp.

Our GI took the step up approach but a little over a year after dx we figured out all the other meds did not work well enough and he needed remicade.
Unfortunately since we took the step up approach his disease got worse and his stomach pain and other symptoms did not go completely away until he was on remicade. One other thing was he stopped growing.:ymad:

It would be easier if the docs could say this type of ibd works best with this med but for the most part it is hit or miss as to which drug will work for someone.

in terms of diet- ds avoids, nuts, skins, seeds, really high fiber and popcorn.
He does drink a semi-elemental formula (peptamen jr) which I highly recommend for anyone with IBD as a child since it helps with malnutrition and growth.:ghug:

Have you checked out the parents forum lots of good members there.
Clash, Tesscom, and crohninct have older children.

 

[Stressed Mom]

I'm sorry that you and your son are struggling. It's a very hard decision to choose which meds to take for CD. My son is 18 and after alot of consideration we went with Humira. It really just came down to convience and reviews we read about both Remicade and Humira. I was also very worried about these medications but my son is feeling better and having no side effects so far. I have read a lot of posts here about the Remi working great for some people and hope that whatever med you decide to start works great for him

Wishing you and your son all the best :ghug:

 

[Kingston]

Hey there!
His story sounds ALOT like my own, (Crohn's disease mostly in the TI, also I was teeny tiny) I was diagnosed over a year ago, and started on remicade immediately, then a few months later my GI added the 6mp, and I've never felt this good! They work great together, and I'm really happy I started on it!

I hope everything works out for y'all!

 

[David]

Hi there and welcome. I'm so sorry to hear what you, your son, and family are going through

I personally really dislike the traditional, "Bottom up" approach to treating Crohn's (for the vast majority of people) and that your son has already had an obstruction tells me it is absolutely the wrong treatment for him. The "top down" approach like your doctor is suggesting is much better. Now, I'm not a huge fan of combining 6-MP and Remicade in a 15 year old male because of some of the possible (albeit rare) side effects, so I'd ask your doctor their thought on trying just the Remicade first. If they give a really good reason for utilizing the 6-MP as well, then I might try it as well.

As others mentioned, with his size, enteral nutrition should definitely be on the table. It's truly a fantastic treatment option.

And be sure to connect with our other parents in our Parents of Kids with IBD section. They're truly wonderful and smart people.

All my best to you and your family.

 

[kit_kat_411]

Hi! I'm 16 years old and have been diagnosed with mild Crohns's disease for almost two years. Before I was diagnosed, I literally went to the bathroom up to 15 times a day. About a year and a half ago, I started Remicade and have been in remission since the day I began (I felt better instantly). My parents were also concerned with me taking intravenous medication, but for me it works wonders. It also helped me stop the weightloss (I lost about 30 lbs due to Crohns). I don't know anything about the other medicine. I hope this helps and that he gets into remission soon! It's wonderful to have your life back in your own hands.