Crohn's Disease Support Group

Hi All,

Havent been on here in long while. Little J, who was diagnosed with full on Crohn's disease at the age of 6 months is now 4. He was on Remicade + Imurek from August 2010 - Dec. 2011. It was a great med combo for about 6 months and after that it just stopped working. By the way, he has been off and on steroids since he was 1 and his Crohn's is steroid dependant. As of Jan 2012 he started Humira (plan at 20mg every other week (injection in the leg) + imurek. Hate the double therapy of the immuno suppressive drugs... high risks combo... FINALLY we have stopped imurek and they have just increased his Humira to 20mg every week as he is once again in a full on flare. They will give this a couple of months to see if it brings him into remission and if not they will try plan C: another (different) TNF inhibitor drug. The doctors said if J not in remission with the optimization of Humira in a couple of months that he will need to go on another round of steroids to help him out as he makes the transition into plan C. By the way, J is also adrenal insufficient due to the longterm steroid treatment and therefore takes a maintenance dose of hydrocortisone (pills) (10mg) every day. He is one tough little guy and takes it all in stride. He is always smiling AND he is growing even with all the steroids and lands on the 50% mark on the growth chart for height and weight. Docs cant believe it.

Hello

I to have a four year old with Crohn's. He to was diagonosed at the young age of 16th months. It started out like your son They told me that it was my breastmilk, rotivirus and everything else. He too started out on 6mp and steroids and then Flagyl wich was our miracle drug. From there to present he takes immuran which has been copunded ito liquid whic he ets in is bottle at night. He has not been on steriods in two yrs. He is happy healthy,and a typical four year old.

Hi... interesting that Flagyl as a miracle drug for your little... our little J cant tolerate Flagyl: he can take every other med in world via syringe or crushed and mixed with a little juice no problem but Flagyl he protested left and right and then would gag and even lost his appetite on the stuff. He is on a special antibiotic right now in place of Flagyl called Norimix (we live on border of France and Switzerland and this drug is only approved in Italy so they special ordered it!) and although it has been tough to crush, he can tolerate better. He is on it for a colonization of bacteria in his intestines.

So please tell me how much immuran does your little 4 year old take? (called imurek here) ... yes, J's was compounded into a liquid as well and I guess flavored a bit as it had a sweet smell. His dose was 40mg/ so 1.6 ml per day. He weighs 16kilos which is about 35lbs.

Do you live in the US? I am from NC ... do you find support from a local crohns an colitis group?

Thanks for any info!

Well with the Flagyl,they compounded it, also so it did not have that terriable taste...Altough there was a time ST.LJ was admitted and they gave him their verison of compunded Flagyl and he would not take it umtil I tasted it and realize that it was terriable so his dad had to go home and get his meds, because he would not take it. Immutan is 5ml once a day. We live in Chicago.

Did any of your LO's have ulcers? My lo started having the bloody poo at 4 months old. He's now 16 months old and they think he has Crohns. He seems perfectly normal besides having a bloody stool many times a day. He does have ulcers all over in his large intestine. He's had 2 colonoscopys and an endoscopy. We should get the results back from the biopsys next week.

if by ulcers you mean bleeding lesions, then yes, my son has and had them. the colonoscopy at 6 months showed full disease (with bleeding lesions) and the most recent colonscopy (approx. 1 month ago) again showed bleeding lesions everywhere. no remission here. he is 4 years old now with a complicated case of crohns. they did loads of blood work last year and sent off to paris for some major testing to find out if he has any other diseases they are missing, anything else genetic that could pop up and change they way they might treat his disease and the end result of many months of testing was that he has a completly "normal" crohn's disease (good news) but with a very severe and dificult case to treat (bad news).

Sorry to hear that. Hopefully they can find some medicine to give him some relief. Over the past year we've seen GI doctors, Immunologist, Infectious disease specialists. I feel like we lived at the children's hospital! So much blood work has been done. They found my boy to have the Adenovirus in his ulcers and blood. So they thought for a while that may be the reason for the ulcers. Well the virus went away and now we're back to square 1 and just had the second colonoscopy this week. The head GI doctor says it looks like Crohns but he doesn't act like he's uncomfortable and seems like a totally normal toddler. He's full of energy and happy all the time. How was potty training your LO? Is he starting kindergarten soon?

Post edited by: av15, at: 08/10/2012 05:59 AM

Post edited by: av15, at: 08/10/2012 06:01 AM

Have you found any foods that help control it? Or any foods to stay away from?

Hi

My son was a happy healthy baby/toddler also. The only differnce was his size and he did not talk. Not to mention snce he was about six months up until the crohn's was controlle.....when it was time for him to make a BM he would stand up or lean over the bed. That was heart breaking. He has pretty much potty trained his self and the only time he wheres a diaper is at night. But he does very well. He's only been potty trained a year and he's four. We put him in pre-k last year. As far as diet, because he was born with it....our medical team says to let him eat what ever he wants, besides the fact he's a pickey eater. But in moderation...he likes popcorn,corn,grapes,but they don't like him. So he's taught his self he can only have a little bit.

~Felicia~

I am so glad to have found this site as our little girl was diagnosed 5 months ago with crohns at the age of 21 months, but has presented symptoms her whole life. It has been a long road but we are glad to have it confirmed as she was in such a state as to not even be on the growth chart. Basically she stopped eating bc her system couldn't take it anymore. Long story short, after listening to the options of med combos, I asked my doc about any other ways to go bc I am a "save the big guns as a last resort" thinker. But as we all know, when u have a little one with crohns, we don't have many other options but these meds. However, the doc did mention one alternative therapy, which we jumped on. It is called nutrition therapy and we did it to avoid the meds, but also bc we had to feed her somehow, and food wasn't an option. Basically we checked into the hospital to have a feeding tube put in via the nose and she was fed a nutrition drink that has "broken down" proteins and carbs, etc. The theory is to give the system a rest from triggers foods, but also to not make it work so hard to break down what is ingested. This way she is able to use more of what is ingested (bc it was critical that she started growing) and give her intestines time to reduce the inflammation. My husband and I just couldn't see putting her right onto the drugs without trying this first and we are so glad we did. She is now almost 10% on the charts after 4 months of NOTHING to eat but this drink (Pediasure Peptide). And most importantly, she is finally happy and pain free, not to mention no visible blood, no nightime blowouts and down to 3-4 poops a day that are getting sludgier. My doc wants to see solid poop and more growth, so wanted to start MERCAPTOPURINE, but we are going to hold off and try to reintroduce food first by consulting our nutritionist and a naturopathic doc to make sure she eats only what they feel will be healing and nourishing. If it works, great, if not then we start the meds, in which case I will be eager to see what works and for how long. This nutrition therapy is used at CHOP, children's hospital in Philadelphia, among adolescents. Some of these teens have been able to avoid the meds by doing this, and in our case, we have been able to buy some time. I will post again when we have re-introduced a food item, and let you know the results. Thanks to everyone who has posted before me, I greatly appreciate it... And if anyone else has tried this nutrition therapy, I would love to know what came of it and what foods were introduced back into the diet. Thanks!