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Crohn's Disease Forum

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Aug 3, 2012
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My 11 year old son was diagnosed with Crohn's in 2007. He started remicade infusions 2 years ago and did very well until February of this year. During the past 2 months his sypmtoms have continued to worsen. He had an MRE last week which indicated the original diseased areas were better, however he has new imflammation in the large intestine. Yesterday we added weekly methotrexate injections to his treatment plan.

Does anyone out there have experience with a child being on Remicade, Asacol, Flagyl/Cypro, and Methotrexate at the same time?

I am concerned about the longterm effects of these medications and would appreciate any feedback from anyone who has a young child with this disease?

Thanks,
Kristi
 
Hi and welcome,
Sorry my knowledge is still limited about meds.
More parents will be along in to help answer those questions.
Welcome aboard.

Farmwife
 
Hi Kristi,

Welcome to the forum although I'm sorry that your son hasn't been well :(

Unfortunately, I also have limited knowledge on the meds, my son has only been on Enteral Nutrition since diagnosis. However, there are a number of parents with children near the same age as your son; I'm sure they'll be along with lots of advice and support. :ghug:

In the meantime, please also have a look through the Treatment forum - there are subforums for all the medications you've mentioned, I'm sure you'll find some info there as well.

I hope your son isn't feeling too badly now and that things will improve for him soon!

:)
 
Hi Tess,

Thank you for your reply. I appreciate you mentioning the treatment forum, I am still trying to figure out how to navigate the site. I will check it out. :)

Kristi
 
Hi Kristi,

I just read the post you left on my thread regarding my daughter, Ellie. I can't thank you enough for sharing your story. We went through the same thing with the "virus". I can't even begin to count how many times we took her to the doctor only to be sent home with the diagnosis of that bug that is going around. Ellie was in pre-k last year and it due to start kinderarten in two weeks. She is absolutely terrified to poop anywhere without me there. There were days I'd pick her up and we'd get in the car and her first words were "Mommy, my tummy hurts. I have to go poopy." My heart breaks thinking how every day, all day, she was in such horrible pain and yet she tried to hide it and hold in her stool.

I so wish I could give you advice or reassurance about your son. He is so lucky to have a mom that gives so much thought and consideration to his treatment.

One question I had was his diet. During the time he was in remission did he follow any special eating plan or eliminate any foods?

Keep us all posted!
Deanna
 
I completely understand what you are saying. If it helps at all, Dustin was the same way. Shy and embarrassed by it. It took a couple of months and he finally got to the point where he understood all he has to do is tell the teacher he needed to go to the restroom. No need to be embarassed.

I make it clear to his homeroom teacher and the school nurse every year that if he asks to be excused to go to the restroom, there are no questions asked; or any of that, "we just took a break, you will need to wait" business. He goes when he needs to, period.

On the diet, you will get a kick out of this. I was probably a little over zealous with the diet thing at first. When he was first diagnosed he was on a low residue diet. He literally ate plain scrambled eggs with a small pasta for extra protein (can't remember the name right now) and toast, shaved deli turkey or ham on plain white bread, cheddar cheese slices, and apple sauce for about 3 months straight. After he showed signs of improvement, our GI doc said that a restricted diet was no longer necessary as his symptoms were from the disease and not his diet. These days, when he is doing pretty well, I will allow him an eat just about anything he wants. I limit the obvious, nuts, fresh corn, grapes, nuts, and strawberries, even apples with the skin on are out. This is the kid who would sit down and eat brussel sprouts for a snack nearly every day right up until he was diagnosed. Talk about feeling stupid, here I thought I was being the good mom letting him eat such a thing, when at the time it was one of the worst things I could have let him put in his mouth. I could talk diet all day long, it was a challenge and still is to be creative when the diet needs to be reeled in. Caffiene is another thing we kept in check (and try to today). My understanding is that this is a stimulant that can contribute to a flare up/imflammation. We did eliminate chocolate & pop that stuff when he was first diagnosed.

I have some great info I received in a binder from our GI Clinic at our Childrens Hospital that I would be happy to share, or you can probably find the same info on line. Your GI doc might have similar info for you too. Just say the word if you would like a copy. I found it incredibly informative and helpful.

Take care...
 
My 11 year old son was diagnosed with Crohn's in 2007. He started remicade infusions 2 years ago and did very well until February of this year. During the past 2 months his sypmtoms have continued to worsen. He had an MRE last week which indicated the original diseased areas were better, however he has new imflammation in the large intestine. Yesterday we added weekly methotrexate injections to his treatment plan.

Does anyone out there have experience with a child being on Remicade, Asacol, Flagyl/Cypro, and Methotrexate at the same time?

I am concerned about the longterm effects of these medications and would appreciate any feedback from anyone who has a young child with this disease?

Thanks,
Kristi

Kristi,
Go to The crohn's breakthrough.com and read the blog all about crohn's. I just did today. It gives you alot of information you will not find anywhere else and some natural herbs you can use to counteract crohn's. I have had crohn's for years and was diagnosed last Aug. 2011. I am always looking for natural alternatives to these meds. Aloe vera juice 100% organic, made from inner gel only. Walmart sells it and it helps me immensly. It is loaded with a long chain of amino acids and is very healing to the digestive system. This I discovered by doing research on the website, It really made a difference. I also take probiotic, multienzyme formula made by Spring Valley. Look into these and the website and read everything and come to your own conclusions.
God bless you and your little one. Teresa
 
Hi and welcome. Sorry to hear your son is flaring and having to add another medication to the "cocktail". Sorry I have no experience with any of the ones he is on so no help there. My son is waiting for his liver enzymes to regulate (Aza did not agree with him) before starting 6mp. Even just that med I wish he didn't have to take. Sometimes I feel like a petulant child when trying to make these decisions - I just want to stamp my foot and say "I don't wanna"! :lol2:
 
DS (8) is on methotrexate and asacol currently.
Another parent we know has their child on Remicade and methotrexate .
I would be very leery of using any supplement ( herbs etc) unless you discuss it with your Gi first. Since they can interfere with the current drugs and may end up causing harm.
That said we use essentially a prebio which comes in his Peptamen jr.
This really helps with his weight. Most do not know he us sick since his weight is at the 50% for his age. Even if you don't "do" EN as a therapy adding it just to help with growth I think is key.
As far as Mtx we had not had any real side effects other than fatigue. On the day after the shot. Most of the side effects are from high doses . We take 15 mg the high dose is 5000 mg.
We may be switching or changing meds again as well since one of his EIM's is vasculitis . That has shown up 3 times in the last month. We are still not off pred. Rheumo just upped it to 20 mg again.
Our school nurse gave DS an unlimited bathroom pass signed by her. This way if he has to "go" at school and there is a sub he doesn't have to explain. We also worked it out so he can use the nurses private bathroom anytime he wants. He has extra clothes there plus soft flush able wipes.
As far as diet he did EN only for 9 weeks to avoid steroids.
He drank the Peptamen jr all orally. Not easy at first but we treat that as you would any medicine not an optional thing KWIM .
Now he still drinks 3 a day .
We have tried gluten free corn free etc ..... No change so we went back to normal just low fiber no nuts seeds beans or fresh corn.

So we are not in remission but hopefully soon.
Wish you luck
 
Even if you don't "do" EN as a therapy adding it just to help with growth I think is key.


I would like to second that!
My Grace does supplemental EN as a way just to keep weight on.
I give her choc. carnation instant breakfast in her smoothies at breakfast and sometimes as just a drink at dinner. The amount varies depending on how much she eats during the day. That way if she's lacking in apatite at least she's getting some nutrients from the drink and calories also.
 
We did Remicade and Pentasa (similar to Asacol) cncurrently; I can't remember if we had a round of flagyl while on both or if it was before/after.

We also did EN while on Remi to help with weight loss...it did wonders for us (and kept her out of the hospital, which is a goal for us often :))
 
my son was 10 when dxd, 10 when started 6-mp, 11 when added humira, 12 when we dropped 6-mp and went to mtx oral w/humira. after 3 yrs solid remission on combo meds, he stopped humira and cont mtx alone for 2 yrs w/o any flares. recent mild flare increased mtx. go back for repeat mre in 2 months. if no improvement/worse will add remicade.

my son is 16 1/2. he is healthy, strong, shaves daily, startles callers who want to know who is that strange man answering the phone, sleeps and plays hard, rarely worries about anything esp his gut.

i don't know what the future holds but i know he would not be the young man he is today without these meds.

his recenT mre showed the extensive stricturing he had when he started humira is completely gone. his perianal disease was banished after 2 years.

at this point he has mild inflammation now in ti and desc colon but nothing like he had at diagnosis. i think it is this mild because he was in solid remission for so long.

you can read more about our story in my other posts. but i think it speaks for itself in some ways.

pax
 

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