# Anyone else have child on Remicade ages 6-17



## Brian'sMom (Dec 31, 2010)

I know I'm getting redundant, but it seems like some of the kids on this thread have severe symtoms like stricture, resections, etc, but are only on azathioprine or 6-mp.  My son apparantly has a problem with inflammation and malabsorbtion(doctors think he's small, but I'm 5'4" and weigh 99lbs). His highest SED rate to date was 38.(Is that high?) Since his sed rates rose a few points while on Azathioprine and prednisone, they said he needed to go to the next step, Remicade.  I just keep looking and looking on this forum for a story like mine and can't find one. He doesn't have any signs of stricture even after having inflammation untreated for long while. So his symptoms are: Cramps only when he's pooping, and he is 4'3" 51 lbs. We've had 2 infusions of Remicade...he feels better...but what that means to him is that now his cramps are a "#3" instead of "#5". I would have thought that the cramps would be gone.  Such an extreme drug to be still having symptoms. I just keep doubting myself. I read so many posts where the poor children are suffering so much, my son seems to be taking serious meds, but not having as much trouble as other kids here. My worry is that the meds will be what hurts him the most...at some point. I pray we're doing right by him. I'd love to be able to talk to anyone who has a child on Remicade. Thanks


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## DustyKat (Dec 31, 2010)

Hi Brian'sMom,

My son Matt (17) that has recently been diagnosed has started on Pred and Imuran. I'm not sure how well he is responding as he has already had one setback that required hospitalisation. He is due to see the GI in mid January and if he doesn't have clear indicators that the meds are working then he has stated he will start him on Remicade or Humira. He was diagnosed on 1st December and he has narrowing in the Terminal Ileum but no signs of obstruction, still having a little bit of discomfort though and is quite fatigued but I suspect he is iron deficient. 

Dusty.


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## DMS (Dec 31, 2010)

Hi Brian'smom
My son has not been on Remicade so I can't offer any advice there but just wanted to say I know how you feel - wondering if the drugs are going to be worse than the disease, and how long will they be able to be on that drug before having problems and moving to the next one and so on. 

I see in your signature that your son responded well to a gluten free diet, have you tried SCD?  Also, if your son is doing reasonably okay have you thought about trying LDN (possibly with SCD?)
Now that you've started Remicade it would probably be very difficult to get your GI's okay to go with LDN - and frankly I haven't met a Dr. who believes in SCD.  But, if your Dr. decides to pull your son off of Rem to try something else, this may be something to think about.

I do know that as Mom's we are doing our best for our kids, and just want to send you lots of encouragement


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## Brian'sMom (Dec 31, 2010)

DMS,
You hit it exactly! Things move so quickly! Brian was off azathioprine for only 4 days and Remicade began. I wanted time to see if he just needed a break...but also didn't want him to be in pain...and end up with stricture! I bought the Vicious Cycle back in June, but doc's had him already on azathioprine,pentasa, and prednisone. I wanted to see if that worked for him. Then things got worse(7-8 bathroom trips a day). Thank you for sending me lots of encouragement  I feel positive and upbeat one day, then it sometimes switches to panic! I think about it ALL the time!! I can't escape it, yet...for my son's sake, I don't want to not think about it, or not research it, etc. I'm a bit of a control person, and not being able to control or fix this is making me a crazy person. This forum helps me, but hopefully my posts don't bother anyone else!! (Like I'm being; me me me..) It's just been a thing that I'm REALLY having trouble accepting. I wish it happened to me and not my baby!!


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## Misty-Eyed (Jan 1, 2011)

Helloo.
Firstly, please, please, please don't worry about him getting a stricture. I've had crohn's since I was 9 (I'm now 27) and I was really ill with it till I was about 18 and never even knew strictures existed till I got some around when I was 19. I still have them now quite badly but I feel great most of the time. I've learnt with crohn's that there's no point in worrying about what complications might occur until they possibly do. You'll spend your whole life worrying otherwise which won't do anyone any good! Just try and take each day as it comes.

Secondly, crohn's is strange anyway. There seems to be no logic most of the time when it comes to treatment and how you feel. Your tests say one thing and you feel another.  I went through practically every drug there was out there and diet between the ages of 9-18 trying to get me into remission and I ended up on pred for 7 years. Yes, I still have some horrible side effects from it from being on it so long. It shouldn't of happened, but you have to remember that a lot of drugs have the potential to give side effects but don't always do. I was on aza for years and I was fine on it. 

I had one infusion of remicade when I was 17 and it was wonderful. But it was so new at the time that it was VERY expensive. I think it cost the hospital something like £17 grand to give it to me and my Dr ended up getting in trouble so I wasn't allowed anymore! 

Just remember that doctors will always weigh up the pros and cons of giving your son treatment. Yes, it is hard. But I know for sure that if I hadn't of taken the pred for so long, I would of been even more seriously ill than I was. 

I hope this helps a little!


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## Guest9283 (Jan 1, 2011)

Don't worry too much about remicade effects, I think your son will be fine on it. I was the first child to ever try remicade before it was on the market, as a trial drug. I was on it for 9 years. Maximum dose for 8 years. No problems, or reactions ever due to remicade. You might want to give the remicade a couple more chances. His inflamation might still be down trending with each infusion.


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## Brian'sMom (Jan 1, 2011)

Mr Ziggy,
I was so excited to see you posted on my thread, I feel like you are a celebrity! I read your whole thread on your stem cell journey. (your thread is the reason I joined this forum) I'm so happy that its working for you and it gives me hope for my son's future. It really calms my nerves to hear you were a child on Remicade (and a male) for 9 years and didn't develop that lymphoma cancer. I didn't know you were on it so long. You being the first kid on Remicade and now doing the stem cell transplant...you are a pioneer! ps, was there a particular reason remicade stopped working for you? (it may have been in your thread and I can't remember, sorry...I've read so much on this site)!


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## Guest9283 (Jan 1, 2011)

Oh shucks, I am no celebrity, but thanks! lol. I am so glad you found your way here to the forum through my blog. Also thanks for reading it all - it's LONG! lol. As far as hope for your son's future, let me tell you, it's never looked this good. There are so many exciting break throughs that have happened in the last 5 years, it can all only lead to a better sustained life style for all of us with crohn's, as time passes, and methods/treatments are refined.

The remicade never stopped working for me. After 8 years, I checked to see if I had any antibodies to the remicade. It showed that I did not build up an immunity to it. It did however start lasting for shorter periods. I would get my infusion every 6 weeks, and I would flare every 5th week, just before the infusion. If you ever see this happening, take note, and your doctor can adjust the scheduling. I eventually had a colonoscopy, in which my doctor perforated my colon. This along with the stress, I believe brought on my flare in which remicade couldn't help. It was just too severve. After that I tried cimzia, and then the transplant. You want to make sure that your son is never taking immuran (6mp) with the remicade, as this increases the lymphoma chances a lot. Otherwise, I never gave it a second thought, it is such a remote chance.

I hope the remicade gets Brian into remission eventually. Good luck!


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## DustyKat (Jan 1, 2011)

> I feel positive and upbeat one day, then it sometimes switches to panic! I think about it ALL the time!! I can't escape it, yet...for my son's sake, I don't want to not think about it, or not research it, etc. I'm a bit of a control person, and not being able to control or fix this is making me a crazy person. This forum helps me, but hopefully my posts don't bother anyone else!! (Like I'm being; me me me..) It's just been a thing that I'm REALLY having trouble accepting. I wish it happened to me and not my baby!!


Oh boy, I know exactly where are at with this. When my daughter was diagnosed in 2006 I felt everything you are feeling. As time passed the feeling became less intense and less all consuming. Then my son was diagnosed a month ago and it has all come flooding back and the hurt is unbearable, at times I even question my capacity to deal with two children with Crohns. I know I will and as hard as it is to convince myself at present I know once again as time passes the new normal will settle in and life will become bearable again, so long as my children are well! :lol:



> My worry is that the meds will be what hurts him the most...at some point.


Again I know this feeling all too well. My daughter wasn't diagnosed until she required emergency surgery, then before I knew it she was on this drug called Imuran and it scared the hell out of me! But the thought of her being so close to death scared the hell out of me even more so the medication seemed to be the lesser of two evils. 

I guess I just want to say that you are not alone in your fears and hurt and I have no doubt that all the parents feel your pain and struggle. Hang in there 'cause we are all here for you and will help in any way we can.

Sending loads of healing hugs and thoughts your way.....

:hug::hug::hug::hug::hug::hug::hug::hug:

Dusty.


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## Brian'sMom (Jan 1, 2011)

Dusty,
Thank you for your loads of hugs  I can't imagine what you are dealing with yourself. I send hugs back your way too!! I just can't stop scouring this forum and the internet trying to find some peace in giving my child these drugs. I have learned here that if you leave the crohn's alone to its own destruction, it may hurt our children worse than the side effects of the drugs. You having 2 children going thru this and have probably already discovered that. I'm someone who has to hear it over and over and over and over....etc...etc until I come to terms with that  I posted a link in 'treatment' of an article I found this morning on the CCFA site. It was a dr. discussing the drugs for crohn's and then the risks and benefits of taking the meds to control it. It has calmed my anxiety, (for now, ha ha), in giving my son Remicade. He spells out in numbers the risks of imuran, biologics, and steroids. He then talks about risks everyday healthy people experience too. I'm new to this whole world on chronic illness, so maybe I'm grasping onto this prematurly. Anyway, I hope I can be of help to any other parent here too...lately I've been getting so much support and not giving much. xoxo to all!


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## effdee (Jan 7, 2011)

I was on Remicade for about a year when I was around 14 or 15. It worked very well for a while, remission for 9 months or so, but it started losing its efficacy. I didn't experience any real side effects from it. I don't even recall getting a cold. 

As Mr. Ziggy said, if symptoms start becoming an issue, especially closer to the next infusion, let your doctor know and it can be adjusted. I started out fine getting it every 8 weeks, but my doctor switched me to 6 weeks when I was getting symptoms a week before the next infusion and that solved things for a while.

Do your best not to worry, learn and understand what you can about all the ins and outs, and keep an eye out for important signs. If you do that, you'll be as prepared as possible to minimize any problems.


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## bry33 (Jan 7, 2011)

Brian'sMom said:


> I know I'm getting redundant, but it seems like some of the kids on this thread have severe symtoms like stricture, resections, etc, but are only on azathioprine or 6-mp.  My son apparantly has a problem with inflammation and malabsorbtion(doctors think he's small, but I'm 5'4" and weigh 99lbs). His highest SED rate to date was 38.(Is that high?) Since his sed rates rose a few points while on Azathioprine and prednisone, they said he needed to go to the next step, Remicade.  I just keep looking and looking on this forum for a story like mine and can't find one. He doesn't have any signs of stricture even after having inflammation untreated for long while. So his symptoms are: Cramps only when he's pooping, and he is 4'3" 51 lbs. We've had 2 infusions of Remicade...he feels better...but what that means to him is that now his cramps are a "#3" instead of "#5". I would have thought that the cramps would be gone.  Such an extreme drug to be still having symptoms. I just keep doubting myself. I read so many posts where the poor children are suffering so much, my son seems to be taking serious meds, but not having as much trouble as other kids here. My worry is that the meds will be what hurts him the most...at some point. I pray we're doing right by him. I'd love to be able to talk to anyone who has a child on Remicade. Thanks


Im not a parent but im 18 i was on remicade when i was 13-14 it was the best thing at the time it still is but if your worried that it will fail the next step is humira and if that fails its cimzia so you have a while to get to that point and there are other biologics you could try that are not approved for crohn's but do work like any RA med when i was put on remicade i didn't have any strictions or anything like that i was flarring badly still but no strictions or anything ive never had a surgey either just make sure you listen to your son during the infusion if he says he feels weird call the nurse over it could be a sign that he developed antibodies...thats why i cant take it anymore but im part of the 14% that developed antibodies lol so its not like there is a high chance he will get it be patient with this med as with any other med humira is a good med too i was allergic to it but it was the only other thing that was aproved and then i was reading about cimzia and mentioned it to my GI and he said ok humira got me into remission


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## Brian'sMom (Jan 7, 2011)

Bry,
Thanks for all the info. We haven't had a chance to see the benefits of Remicade just yet. Day before the second infusion my son tested positive for Strep throat. It and the antibiotic (ammoxcillian) sure did a number on him! We're treating an abcess right now. But he's doing much better.


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## bry33 (Jan 7, 2011)

thats really good to hear that he is doing much better make sure he feels completley better before doing the second infusion otherwise he will just keep getting sicker just hang in there it takes a little bit for the infusion to work just really try to pay attention to what he says and take every discomfort during the infusion seriously and it's not uncommon for him to be fatiuged after each infusion it takes a lot out of the body i wish the best of luck just remember that if remicade doesn't work he isn't at the end of the line with meds they always come up with newer and better meds


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## Ktomakin (Jan 13, 2011)

Hello Brian's mom,

My son started Remicade in October 2010 just before his 4th birthday, he has his 4th infusion on Monday. He was sick (having a flare-up) for a couple months before being hospitalized and diagnosed in Oct. His symptoms included weight loss, loss of appetite, 30-40 lesions in mouth, down esophagus, colon and on his bottom, along with diarrhea, fatigue and joint pain (couldn't even walk). The Doctors immediately suggested Remicade, we didn't get the chance to try any other medications. So I have been have similar thoughts as you to weather or not this strong of a medicine is OK, for young children. I worry about the long term affect this will have on him. I know there was testing done, but most of what I have read doesn't mention testing on children as young as four. But he has responded extremely well to the Remicade and very quickly. He still has pain in his tummy and his bottom when he uses the bathroom, but overall I would say the medicine helped a lot!! I hope your son starts to feel better too!!


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## Brian'sMom (Jan 18, 2011)

Ktomakin,
I feel like we've had a crash course on crohn's in just a few short months! I've come to find out that the younger, newer GI docs seem to go straight to Remicade with the younger kids that are having trouble because they think it is the best thing out there for them.  They want to get them growing and gaining weight and reducing inflammation as quick as possible. Maybe the thinking is: they are so young so don't mess around with letting their intestines have any damage so they will have the best future, (since this is a life long disease).  I just want my son to achieve remission.  I want to hear "SED rate is 10 and CRP is .5"!!  We heard that once...but prednisone did it for us...and for only a week or two.  My GI doc will do ANYTHING before prednisone. (We switched to her recently...our old doc was what she called 'old school')
Hope you son does well...my son was originally thought to 'maybe' have crohn's when he was five...my husband and I were in denial! Now that may be the reason we're having a bit of a struggle, but I feel confident he'll get to remission.


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## AZMOM (Jan 18, 2011)

Brian's Mom - I just wanted to tell you that you are "dead on" about the top-down approach.  When Claire was diagnosed in the hospital, her GI wanted us to go the Remicade route due to the severity of her illness.  He drew a "traditional" treatment pyramid on a piece of paer and then flipped it over.  I adore that doctor!  Unfortunately because of a weird neuro issue she'd had, we can't use TNF blockers.  Anyway he said this was the school of thought he agreed with to avoid the damage you mentioned and to avoid prednisone use in our kids.  

I hope you see a better and better response to the Remicade for Brian!

Thinking of you all - 

Julie (Claire's Mom)


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## Brian'sMom (Jan 21, 2011)

Ktomakin, We had some trouble with our remicade infusion today. They started out slowly and all was ok, when the nurse turned it up, he started to have that tightness in his throat. They gave him benedryl in his iv and then he was ok.  After a bit he had a fever of 101.1 so they just decided to stop the infusion and have me watch him over weekend to make sure he wasn't sick. He hasn't run a fever since so I think it might have been the reaction that caused the fever. They act like this is common with kids and he'll just have to receive the stuff over 3-4 hours and he'll be ok.  Did your 4 yr old not have any issues at all?  How fast did they give him the remicade? I hope his reaction doesn't mean he can't get the stuff. He didn't have any rash. Does anyone know anything on this?


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## Brian'sMom (Jan 26, 2011)

Bry,
It happened to my son too. He went for his third infusion...right on schedule and he had an allergic response. (Difficulty breathing). We tried it again yesterday, at a much slower rate and he had that feeling again...but caught it much earlier. After you had the reaction to remicade...did you just do fine on cimzia? Did you try Humira?


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## Max's Mom (Jan 30, 2011)

I have a son with Crohn's disease. He is also 10 years old.We have been doing Remicade treatments since May 2010. He is feeling awesome after two years of being in pain off and on.Two days ago we stopped using 6-mp but he is still on Pentasa for another 3 months. After that,if he's still doing great,the plan is to be on only the Remicade. Right after his second treatment,back in May, he developed a rash on his chest, not itchy. It lasted for two days then it was gone. We haven't had any problems since. His highest sed rate was 96.At one point he was losing a lot of weight and not growing much,but lately he has gained a bunch and is starting to grow again.He now weighs 75 lbs and is 4'5".I can relate to everything you are talking about.I also wish that it would have happened to me (Crohn's that is)so he could have a pain-and worryfree childhood.But I keep telling myself that what doesn't kill us makes us stronger.Feel free to ask me questions if you have any.


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## Brian'sMom (Jan 30, 2011)

Max's Mom,
Thank you so much for telling me about your 10 year old, Max. This is what I love about this forum, it connects all us Mom's so we can comfort each other! They started Brian on Humira last friday, he's been feeling really good since. I pray it continues this way. I'm glad Remicade is going well for Max. The every 8 weeks is what I liked about that option. But, Brian handled the shots of Humira like a champ. They had him 'blow out candles', after a bit I thought he might hyperventilate! He then burst into laughter!! I think he was soooo relieved that it didn't hurt as bad as he must have imagined it would. These young kids are so tough, aren't they?!!


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## AZMOM (Jan 31, 2011)

Hey Brian's Mom - I'm so GLAD the first Humira round went without a hitch.  You are due some smooooooooooth sailing!

Hugs,


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## Max's Mom (Jan 31, 2011)

Hi,Brian's Mom,I am glad Brian is doing better.Yes,our children are way tougher than us adults.I was wondering, is Brian your oldest child? Max  has two younger siblings.I read somewhere that Crohn's usually happens to the oldest child in the family.Or if anyone else knows if there is any truth to that.


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## AZMOM (Jan 31, 2011)

You know, Max's Mom, in our house, it's our youngest.  My daughter is 7.  My son is 11 and thankfull, no GI issues at this point.  

Makes you wonder though......


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## Brian'sMom (Jan 31, 2011)

Brian is our youngest of 3.


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## Dexky (Feb 1, 2011)

Well, I'm not a mom, but I find a lot of comfort here too.  EJ is also the youngest of 3.  I'm glad Brian is getting along well with Humira.


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## Brian'sMom (Feb 1, 2011)

Lately I've been having trouble with the 'doom and gloom' of the whole chronic thing. We've been trying to figure out which med Brian needs to be on...There is some comfort in having the big dogs 'out there' if you need them. When Brian had the allergy to remicade I think it rocked my confidence.  I'm just having trouble sleeping now, its on my mind all the time...the 'what if's' are driving me nuts! I wish I could just relax and wait and see how this Humira works.  Sorry to be so glum... Mark I noticed your comment of finding a lot of comfort here... I agree with that in parents having the same feelings...but when you read of the kids having trouble it kinda lets you know that it could happen. Brian is feeling really good and there should be every reason that it continues for him...blocking the tnf is fixing the problem, but in the Humira threads you read of adults saying the drug stopped working for them...I should've just not read anything and stayed naive!


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## Max's Mom (Feb 1, 2011)

Ifeel the exact same way.From time to time I had to stop reading about Crohn's just to take a break from it all.As much as we need treatment, we need a cure for it. I have been reading about Mr. Ziggy's stem cell transplant and it has given me tons of hope for the future. But when I asked our GI doctor about it,she didn't seem to know anything or have any interest in finding out anything about stem cell transplant. It is hard to think about all the pain Max has had in his short life,but when he is asked about it, he doesn't remember it being so bad.


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## Brian'sMom (Feb 1, 2011)

Max's Mom,
I think the pediatric docs don't know tons about the stem cell because its still a trial for adults only.  I found a cool article about the whole 'cure' aspect. They continue to get closer...the tnf drugs are an example of that.  They've mapped out the gene that causes the problem...now they can keep digging deeper.The name of the article is called "Scientists Find The 'Master Switch'  For Key Immune Cells In Inflammatory Disease."  Here's the link:
http://www.medicalnewstoday.com/articles/213872.php


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## AZMOM (Feb 1, 2011)

Brians Mom - Been there, done that, more than once.  So I'm saying I get it.  You will find your "new normal" and the highs and lows won't be so wide apart.  That's my hope for you.  Humira could work for him indefinitely!  But I so get it.  I do it over every new med, wonder what's next if this doesn't work.  

In the meantime, if you are getting in a pattern of your mind is racing and you're not resting, go get some meds.  I'm sure I may get jumped on by some for telling you that.  But I'm telling you I was working, running, taking care of my fmaily and hardly sleeping over 'what ifs'.  The best decision I made was finally telling my doctor who said, "You NEED some rest!"  She was so right.  I took something long enough to break that vicious cycle.  I can never thank her enough.  

Big hug from one mom to another,

J.


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## troydanielbecker (Feb 1, 2011)

I'm not a mom either, but I sure identified with your original post, Brian'sMom.  And reading all of your reactions, my fellow repliers, sure is good for perspective.  

When steroids wasn't seeming to work very well for us our doctor started talking about the sequence of more drastic treatments, and here I am thinking "can't we cure this by balancing his intestinal flora and getting on the right diet?".  So after the first three weeks of steroids we got serious about a probiotic regimen (mostly acidophilus and saccharomyces) and had good positive results over the next few weeks.  We started tapering off the steroids but continuing for now with the probiotics, and all is well.  Of course, there's no telling if the steroids just needed that extra time to kick in.  (I want to add that Isaac (our 2-yr old with UC) takes his sulfasalazine three times a day.)


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## Ktomakin (Feb 1, 2011)

Hello Brian's Mom,

Sorry for the delay writing back, we are battling the cold in our house.  
The Dr.s always give Jacob Benedryl and Tylenol before he even starts the infusion. I'm sorry Brian had a reaction to the treatment. How is he feeling now, any symptoms? I know it is hard to deal with the fact that they are so young and dealing with this disease. We just have to stay strong and positive for the boys   Hope you are all doing well and new meds are working better!!


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## Dexky (Feb 1, 2011)

Brian'sMom said:


> Brian is feeling really good


Enough said Mom!!  Live it like it's gonna last forever!!


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## Brian'sMom (Feb 3, 2011)

Julie,
Thanks so much! Brian is doing well after one week on Humira! I know what you mean about breaking the vicious cycle, I'm just scared of 'adding to the situation'. I'm going to try a natural supplement, melatonin, and see if I can get some needed sleep tonight.
Thanks, Kathy


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## Max's Mom (Feb 3, 2011)

About the sleep thing. In the beginning(first year or so ) I also had trouble sleeping,and also feeling very depressed. I just wanted to be by myself not talk to friends etc. Brian's mom I think you just need some time to let it all sink in . Think about things that could be worse.There are lots of them. Don't worry,they will figure this thing out. I keep telling Max"don't you want to be a doctor when you grow up and find a cure once and for all". Hang in there!


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## pattinmaine518 (Feb 5, 2011)

*Remicade*

Daughter has had Crohns since age 8... we started out with steroids and quickly moved to Remicade/  6mp, which worked for about 5 years, however you can build up an immunity to it. We were switched to Humira ( I DO NOT reccommend that) That caused severe psoriasis and did nothing. We resorted to an Ostomy for bout 1.5 years, reversed last year and back on Remicade, its not working for her now, back to the drawing board, nothing seems to be working...SED rate at 86 right now... not a number I like to see. 
 Just keep an eye on the Remicade and as soon as he is not making it to his next treatment, where they have to make them shorter and shorter its time to change, as thats where the body is building up immunity...


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## AZMOM (Feb 6, 2011)

Kathy - How'd the melatonin work for you?  I hope fab-u-lous-ly!

Hugs,


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## Brian'sMom (Feb 7, 2011)

Julie,
welllll, not so good! I still am waking up and then can't fall back asleep. 
Kathy


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## AZMOM (Feb 7, 2011)

Well SHOOT, Kathy.  I sent you a private message.  Let me know that you got it.  

J.


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## mreyn (Oct 21, 2012)

Brians mom, Can you please send me the link to the article you were speaking about relating the risks, etc of imuran/remicade? Our son was placed in the hospital when the surgical prep they had him do wiped him out. He was in there for 4 days and we were given no other options but remicade and start imuran later. We've had one dose of remicade and haven't started imuran yet and I'm scared to death. We  have cancer on both sides of our family and I've since heard that imuran/remicade as a combo is very dangerous and contraindicated in boys... so i'm now feeling horrible about the decision. I literally broke down in the hospital when they gave us the paperwork with the side effects, etc but we weren't given any other choices. IS there not a more natural tnf blocker?  CAN't remicade be combined with something else, I had someone say today methotrexate instead of imuran. Please, I need some advice or info I can offer the dr if we really need another option. I DO NOT want my son to go from bad to worse. I don't know what I would do if we lost him and put him thru worse due to a decision we made for him. advice really appreciated.


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## my little penguin (Oct 21, 2012)

Generally Gi 's now put kids on remicade only.
If they need a combo they add methotrexate .
The odds of tcell lymphoma is rare though .
A normal person Has a risk of 2 in 10000.
With remicade + Imuran the risk doubles to 4 in 10,000.
Risk of dying from a car crash 1  in 250.
Drowning 1 in 2000 I believe.


http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

http://www.crohnsforum.com/showpost.php?p=445199&postcount=3
Post on it by David .


Hugs


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## Aniuko (Oct 25, 2012)

I would like to thank my fate to bring me here...

I am sitting at the hospital in Munich, Germany and just found out that my daughter after three years of successful MTX shots has an inflammation (without any symptoms other that blood results and calprotectine elevated) and needs to start Remicade. I am sooooo scared! But you guys give me hope and calm me down so much. Thank you!

I want to stay in contact with all of you if possible! My daughter is taking her whole Crohn's really hard right now. We live in Germany, no English speaking support groups, no English speaking psychological help (I guess if I looked but she doesn't want to hear about it). She is 12 right now and was diagnose when she was 8. Is there anyone who would like to be my daughter email friend? I feel she needs someone with the same problems, fears and worries. 

This forum is so comforting! Thanks a lot!


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## DustyKat (Oct 25, 2012)

Hi Aniuko and :welcome: 

I am so sorry to hear about your daughter...:hug:...and sorry you had to find you way here BUT it surely is a fab place for info, support and even a few laughs! 

I hope Remicade does the trick for your girl, bless her, as it has for so many here.  

Perhaps you would like to start your own thread in the Parent's Forum? That way more members will see your post and your story doesn't get 'lost' in some else's thread. 

Good luck and welcome aboard! 

Dusty. xxx


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## Hope345 (Oct 25, 2012)

Brians Mom,

I am so sorry to hear about your child.  It is so heartbreaking as a mother to see our children suffer.

Our daughter was diagnosed with Crohns in Jan of this year, and she has had 5 treatments of REmicade  to have her almost in remission.... no pain!!!      I feel the same way you do about all of the meds, but until we can get it in remission these seem to be our only options.
Our goal is to go more with natural methods down the road and hopefully eliminate the chemicals.      It has been a long 8 months but we finally see the light.   
I am also a big advocate of no lactose or milk fat in her diet.  There has been a lot of scientific evidence and mothers who claim lactose does cause problems with Crohns patients.  although each person is different, so what may cause it in one, may not be the cause in another.

Trying to stop the Crohns, she had 2, 6 week treatments of Prednisone while she was at a severe level. It helped but the side effects were not good at all.     We also tried Mercaptopurine which did not work.  She has taken Asacol from the beginning.

She has had NO side effects from the Remicade and it is working, along with eliminating Lactose.      Let me know if we can answer any questions for you.
Best to both you and your child.:hug:


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## tichard (Oct 25, 2012)

What are you on now and how are you doing? My nine year son was diagnosed with Crohn's in April of 2012 and I am scared to death.  How old were you when you went on Remicade? Why did you stop using it?  What meds are you on now?



Mr. Ziggy said:


> Don't worry too much about remicade effects, I think your son will be fine on it. I was the first child to ever try remicade before it was on the market, as a trial drug. I was on it for 9 years. Maximum dose for 8 years. No problems, or reactions ever due to remicade. You might want to give the remicade a couple more chances. His inflamation might still be down trending with each infusion.


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## tichard (Oct 25, 2012)

My nine year old son was diagnosed with Crohn's in April of 2012 and I it has been a rough road since.   We live in Columbia, SC.  How often does your son received Remicade Treatments?   My son is in fourth grade and has missed eight weeks of school do to his recent flare.





Max's Mom said:


> I have a son with Crohn's disease. He is also 10 years old.We have been doing Remicade treatments since May 2010. He is feeling awesome after two years of being in pain off and on.Two days ago we stopped using 6-mp but he is still on Pentasa for another 3 months. After that,if he's still doing great,the plan is to be on only the Remicade. Right after his second treatment,back in May, he developed a rash on his chest, not itchy. It lasted for two days then it was gone. We haven't had any problems since. His highest sed rate was 96.At one point he was losing a lot of weight and not growing much,but lately he has gained a bunch and is starting to grow again.He now weighs 75 lbs and is 4'5".I can relate to everything you are talking about.I also wish that it would have happened to me (Crohn's that is)so he could have a pain-and worryfree childhood.But I keep telling myself that what doesn't kill us makes us stronger.Feel free to ask me questions if you have any.


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## DustyKat (Oct 25, 2012)

Hi tichard and :welcome: 

I am so sorry to hear about your boy...:hug: The folks here well understand your fear and apprehension that goes along with this disease. 

Perhaps you would like to start your own thread in the Parent's forum? That way we can give you the welcome you deserve and your questions won't get lost in this thread. 
Also there are quite a few parent's here that have/had children on Remicade and it will be easier for them to find you. Be sure and put Remicade in your title. I will also tag people into the thread once you have it up and running.  

Welcome aboard! 

Dusty. xxx


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