parents with a child on Remicade?

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marcuspete

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Apr 19, 2013
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I am looking for anybody who's child takes Remicade as treatment. My 10-year-old daughter is really worried about the prospect of taking it, but nothing else is keeping her in remission. I am hoping to find another kid who will say that it's not too bad. Anybody?
 
Hi marcuspete and welcome to the forum! :D

I didn't get it when I was a kid but did as an adult. You get an IV and sit for a couple hours watching movies, reading, playing games, having snacks, going online or whatever you want to do. Usually I chatted with the other people who were also getting an infusion. You get to meet a lot of interesting people. :)

Hopefully a parent will be by soon to let you know how their child is doing while on Remicade but for now you can check out the Remicade subforum here: http://www.crohnsforum.com/forumdisplay.php?f=58 I hope that it works for your daughter and that it puts her in remission. Its helped a lot of people on the forum.
 
Ds was on remicade from August of last year until this past march.
He enjoyed infusion day. Outside of the Iv "pinch "- he watch movies lounged in a recliner with warmed blankets. Ate plenty of food and hung out with one of us for the day.
Plus missed school even though he wasn't "sick"
Get buzzy bee for the Iv and she should be good.
Good luck
 
Oh and remicade was the only drug to make him feel better again. He went back to playing, eating swimming etc.... Just being a kid no more body aches or tiredness etc...
 
marcuspete,
Our daughter has been on it for a almost a year. she has had no problems with the treatments at all. Her favorite part is still ordering her lunch :)
She gets to watch TV, and at her hospital they play bingo and win prizes. Even at 14 that can be fun...

The nurses have always been so friendly, caring and take lots of time to get everything going, and come in and check on them every 15 minutes.

some hospitals have computer for kids to play on, and you can bring any games you might want to play too....

If you need to use the bathroom, you just unplug from the wall and bring it all with you..

I hope this is the medication that works for your daughter.
 
Another iv leaguer here. My daughter is 13 and has been on it for a 14 months. She doesn't get to order lunch, warm blankets or bingo but I do bring up her favorites from the caf and they have movies, and ipod and such. Big comfy chairs and the nurses dote on them like kings and queens. She loves infusions and says the only thing missing is mani pedi's.

It has been very easy on her and with a little help from EN early on got her to remission (mommy declared remission) and there she stays.

The only side effect she got was severe psoriasis all over her face and scalp and balding from the psoriasis. But to show you how much she loves REmi, she was given the choice to stop and she said, "no way! I would rather be itchy and ugly than go back to Crohns sick".

I like it because compliance is assured (my daughter is bad about remembering her meds and supplements) and we get blood results after every infusion so lots of feedback on how they are doing (that is if bloods are a good indicator for your child).

Have her drink lots of water the day before and day of infusion. Helps with iv placement.

Also, don't get discouraged if it doesn't seem to work right away. It can sometimes take a while to work out dosage and schedule. My daughter started 2/2 and it took until July for her to start smooth sailing.

Good Luck!
 
Hi, my 14 your son is about to have his 3rd infusion. Have to admit to begin with he wasnt keen on it at all, wanted to go steroid route, however i pointed out these didnt work before and he hated the side effects, so we researched together and read alot then he came to us and said he wanted to go ahead with it.

We always put the elmlea (?) cream on when we leave home, to numb his arm, its takes approx 1 hour from home to getting on the ward, safes waiting around at hospital. The same nurse will always look after him, and we also see his IBD nurse, so familiar faces which i think helps. Never a problem putting the IV in, he always been very good with bloods. The he just gets on his bed, ipad out and watches some films he has downloaded, or plays a game on it, likes me to go to the cafe to get his favourite drink and sweets! Nurses very good, checking constantly and stange as it seems he is looking forward to Mondays infusion!

We didnt notice much of a change after the 1st one, however after the 2nd there has been a significant improvement him, being cheeky, which is good, school trousers are to short! Appetitie increased and slightly more energy, and back at school part time. The nurse did explain that usually it takes a good 6 months to see the full results in the children they treat.

Good luck with it, and hope she gets on ok with it, keep us posted x
 
Thanks for the responses (so fast!). I will share this with my daughter. Her name is Alexandra, by the way. I saw some things that made me a little worried about side effects.
We've been battling Crohn's for about a year and a half now. We tried steroids and enteral feeding with and without a feeding tube. So far, nothing has worked long-term. Alex has been a trooper for most of this, but I think it's wearing her down.
 
Where is your daughter's disease located? Enteral feeding has more success in small bowel disease than the colon (although my daughter's disease is primarily colon but then again we combined it with Remicade). Even if Enteral feeding gets you to remission initially once you come off, it is only a matter of time before you have to either go back on or get on a maintenance med. Steroids are usually good at getting the disease in control but aren't a long term option. Most kids need a maintenance med.

All this to say, don't be discouraged. The docs have a lot of tricks up their sleeves and you will find what works for your daughter.

Typically I don't find many side effects with Remicade and that is one of the things that is appealing. I do read about the scary risks but quite honestly they are very low and the risk of uncontrolled disease is way higher. My daughter's risk of drowning or dying in a car accident are much much higher than any of the risks of Remicade and I put her in a car and pool every day. Risk vs. reward for us I guess.

Crossing my fingers that Remicade is your ticket. When is her first infusion? Keep us posted.
 
ALexandra- this is from my DS
"Remicade isn't that bad -becuase you get to sit in a recliner chair and sometimes if you want a warm blanket they give you warm blankets. They give you a warm packet and numbing device for the iv. The iv only hurts a tiny tiny pinch. you can watch movies. they have games to play and they have lots of cookies and food from the cafeteria. you can take a nap and bring your electronics too. you also get to miss school. it is hard to eat since the iv is in your arm and you can't bend it. the iv only hurts a little bit in your arm.
the blood pressure cuff sometimes hurts your arm too. That might be it"

He is only 9 and got remicade from august of last year
 
I heard ur comment. i am sorry about ur son. I hope he feels better. I feel like I'm the only 1 who has Crohn's. But now I know i'm not the only1.

THANKS! :):ghug:
 
We had a talk with her doc yesterday and have decided to stay on the enteral diet for now. She also takes Pentasa and Azathioprine (that's the generic but I can never remember the brand name). Even though she still has symptoms, they are not too serious. Hers seems to be mostly in the colon. I have my doubts about what to do long run, but for know, we are staying put.
 
hey just wanted to say my son is on remicade(infliximab in england)
hes been on it since sept lasy year and will co tinue to be on it for another two years its helped him immensly he eats like a horse during and after and his abscess.s and tummy pains have really settlled not altogether but enough to lead a normal life. our doc has said when he comes of infliximab he may get symptons again but worse so im pushing for him to stay on it longer than the two years . after all the soul searching and informwtion i read on it to make the decision im going to fight to keep him on so thats how good he is doing on it .xx
 
Marcuspete,
Violet was also diagnosed at age 10 and has used enteral feeds via NG tube at night ever since without interruption. It is why her growth/development have been awesome despite active disease the entire time and we LOVE it as a treatment.
She started Remicade Dec 27 and has not responded well, we are about to add Imuran 150mg (azathioprine) May 1.

Ditto to what others have said about the actual infusions, I dare say they are fun except for the reason you're there.
V hasn't had any adverse effect from Remicade, it just hasn't gotten her disease under control, hence adding Imuran.

So it sounds like your girl will be on the same 4 treatments as V (enteral, aza, Pentasa and Remicade) so PM me if you like and I can share anything else you may want to know from our experience.

Julie
 
To imaboveitall:
So Violet has been on enteral nutrition for 5 years? How is she handling it? Did you start Remicade because of problems with the feedings?

I understand the Remicade doesn't always take full effect right away.
 
Yep, marcuspete, five years, since day of diagnosis.
Read some of my other posts and Tess's too her boy Stephen has also been on EN since diagnosis.

She was so very sick when diagnosed that she/we had no choice but I am SO GLAD we did it. It kept her off drugs for three years, it was NOT ENOUGH after that and she started to need more, i.e., medication in addition.
She is apparently refractory and is not responding to any meds except prednisone (temporarily). Remicade is currently failing and we are considering adding Imuran.

If I drive any point home from Violet's experience it is this:
she has had ACTIVE disease all FIVE years, has NEVER been in remission BUT her growth/development have been amazing and that is NOT the case with most kids with active, refractory disease. Pubertal delay, stunted growth and mal-and undernutrition are COMMONPLACE in this population.
She looks amazing, no one would believe she is very, very sick from her appearance and THAT is directly attributable to her longterm use of formula feeds.

As far as handling it, she is a mature, unemotional rational type raised in a medical family and exposed to med terminology etc her whole life so she handles it fine. I know that may not be extrapolative to many children.
She also knows how close to death (not exaggerating) she was at diagnosis, and that her appearance matters to her so she is OK with the feeds for those reasons.

She went to IBD camp one summer and was rather horrified as was I to see the waiflike, emaciated and underdeveloped kids that were in the majority there. She has an hourglass figure and knows that would likely not be the case were she not on formula.

She and Tess's Stephen place the NG tube each night themselves. It takes SECONDS, not minutes, seconds and is painless to do.
Any specific queries I shall be glad to answer, Tess is a great information source on that subject too.
 
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DS used EEN here as well. Now he has food with his daily peptamen jr.
You can tube or you can drink it orally.
DS has been drinking his daily for almost two years.
As imaboveitall stated for nutrition and growth it is so worth it.
DS gained 20 lbs and started to grow again.
 
Wow!

OK, I was thinking of enteral as just a temporary approach to get Alex into remission. I never thought of it for long-term maintenance. She has adjusted well to the feeding tube, but she still gets the munchies often. I suspect that is why she still has some bloody stools.

It sounds like Alex's is a pretty mild case. She is about normal weight and height. Thanks for putting things in perspective.
 
Hmmm...I wouldn't necessarily say Enteral Nutrition is for long term maintenance of disease but yes long term maintenance of weight and grwth.

Most find that the first round helps get you to remission but that after time you either have to hop back on or add a maintenance drug as inflammation returns. Those of us who continue formula feeds are usually doing it to keep boosting nutrition, weight gain and growth. There is also some evidence that continuing with formula along with maintenance meds increases the chances of maintaining remission. Maybe true maybe not but it doesn't hurt to drink a can or two of formula a day so I would go with it!

FWIW - our current plan is Remicade and we will hit future flares with another course of EN...been symptom free since last August when she stopped EEN.
 
Hey Marcuspete,

We don't have experience with Remicade, but my son has been on Pentasa since diagnoses. After the first year he still has slightly elevated inflammation markers and the doctor discussed both EN and 6mp - I had learned there were patients on a higher dose of Pentasa (he took 1500 mgs a day back then) and I asked if we could add more to see if that would help. The GI increase him to 3500 mgs and we've been there ever since (albeit a short visit trying Lialda that didn't work for him). Pending how much your Alex (I have an Alexander - smile) is taking now - it might be worth the conversation?

Good luck! God bless...
 
Hi Marcuspete,

I just want to second, third, etc. what's been said about ongoing EN. It kept Stephen in clinical remission for almost two years with pretty much no drugs (nexium only), he had to start remicade in February as the EN alone didn't treat all the inflammation but he is still on EN now... gradually tapering as he will be leaving for university in Sept but am hoping that he will replace his nightly EN (thru NG tube) with a couple of Boost shakes daily. Not only did it seem to keep his crohns 'in control', being a picky eater, I fully believe he has had the best nutrition ever in his life! No harm can come of it and lots of benefits! :)

And, as imaboveitall said, inserting the NG tube takes only seconds!
 
Hmm. I guess we will stay open to continuing EN as long as the doc recommends it. Alex takes meds with hers but is not in full remission.
She started by drinking cartons of store brand Ensure Plus and that eliminated the bloody stool. As soon as she got off, they came right back. She then went to the NG tube (with Pentasa & Imuran) but still has occasional blood.

We have a trip planned in June and I am not looking forward to hauling all that stuff along.
 
We went away in January... I compromised... rather than using the 'unpalatable' formula (hence the ng tube, pump, etc.), I took along Boost shakes he could drink.

I think it was imaboveitall that once said she's had the formula shipped ahead when they've gone away???

There are also 'gravity' bags - so, no pump. Hang the bag somewhere and you adjust the flow manually, ie if 50 ml done in 15 minutes, you know you're running at 200ml/hr. I was given a couple of these bags but have never needed to use them so no real experience with them to share...
 
Two years ago, my six year old daughter was put on Remicade infusions at 6 years old. She began having strokes within two weeks of her second infusion. They discovered that she had vasculitis which is a side effect. She ended up having multiple strokes and this is what took her life within weeks. I am not trying to discourage but feel it is important for people to know our story.
 
Lovekc, I am so sorry for your loss. We are all parents of IBDers and deal with these horrible decisions regarding treatments and the consequences, good and bad, for those that we cherish more than ourselves.

I have thought about your post alot this week. My son is on remicade and every infusion I quietly stress and pray all goes well. The night after the infusion, we are all drained. Knock wood, the remicade has worked wonders for him.

I appreciate you sharing your story, as it must have been hard to post. Please know, you have raised the awareness of myself and other parents. Knowledge is a good thing even when it is something that would be easier not to know. We are battling this disease and it is easier to formulate a plan when you understand what the enemy is capable of.

Your family in in our thoughts and prayers. :ghug:
 
First let me say to Lovekc I'm an so sorry about your daughter, thank you for sharing that with us. Big hugs to you oxox

My son is 13 and was dx last Dec and has been pretty sick since last Sept when we started on this journey to diagnosis. He is currently on 6-mp and Sulfazine and weaning down on the recent round of prednisone. he is feeling good but the doc said if he goes into full flare again she wants to put him on Remicade which scares me to death. I appreciate everyone sharing their stories.

Another thing we are doing is Nutrition Response Therapy and that has worked really well. if you dont know what it is there are some great Youtube videos. Some people think its quackery but he really is responding well.
 

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