Should we try Remicade

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Saphira

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Apr 7, 2011
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Our Dr suggested today we try Remicade for Brandon (9 years old). He has been in a flare of some form of IBD since Thanksgiving, and tried Entocort, Prednisone and still on Asacol Omeprazole and Levsin for pain. Only mild blood markers, and mild biopsy changes but sever pain and frequency of BM. Cant seem to wean off prednisone.
Brandon asked me "Why can't I just be normal"?
Remicade was offered by the GI, but I am nervous... What have other parents done.
Trina
 
Trina, have you looked through the Remicade club under the Treatment forum. I've only read bits and pieces of it but for most it seems Remi has done wonders. There will always be those who don't respond or have bad reactions but the overall trend with it seems to be positive to me. Every med you try for Brandon will carry some risk. I'm sure you've tried every thing diet wise under the sun by now!! If nothing else is working, well no one can tell you, but if it was me and my son, I'd try anything to get him in remission.
 
Trina,
My daughter (11) was on Remicade for a year and a half and she did really well on it for a long time. She was diagnosed at 8 and her first treatment was an NG tube for 6 weeks and an immediate start to Remicade. She responded really quickly and went into remission. After about 6 months, her doctor wanted to try her on azathioprine. She was on both for awhile to allow the azathioprine to start to work. She looked great at 10 weeks post her last remicade and then at 12 weeks when all of the remicade was out of her system she started to flare again. We went back to the remicade and although it "worked", it never worked as effectively as it did before. Over time we had to shorten the time between doses and increase the amount of medication she was getting. Throughout all of this, my daughter was a trooper. She never minded getting the remicade infusions and actually started to look forward to them because she would get a burst of energy from them.
We've since moved on to other medications...failed a Cimzia trial, and are now trying to get Humira to work. Although these meds are only a quick shot, she still preferred the infusions because they didn't hurt at all and they don't give her that boost. We had the longest success on Remicade and given what I know now about how she responds to Cimzia, perhaps we would have stayed on Remicade longer. We're still keeping our fingers crossed that Humira is going to work for us, but I have my doubts.
I wish you the best of luck in your decision!
Carol
 
Thanks Carol,
My biggest problem is not having a true diagnosis. Brandon was diagnosed 2 years ago with CD and then we swithced to a new Doc, and he was not sure... so we did the prometheus test nad it siad pattern not consistent with IBD. If it isn't IBD what is it, and should I really expose my child to a drug formed from mice antibodies and cancer cells if he has something different?? Arghh.... Just not sure...
Trina
 
My daughter has been on Remicade since the end of December. Now her treatments are every 8 weeks and we have just been given the all clear sign that she is in REMISSION!!!! So far no side effects from the Remicade. Not exactly sure what got her to this point, she has been on Pentasa, Prednisone and Remicade. But it works for her so far. If it keeps her in remission, we will keep on going with it.
 
Hi! My son has been on Remicade for almost a year now and he is doing great.He is 10. Treatments were hard at first, he would roll up to a ball and cry and they would have to hold him down. But now he says he can't feel a thing(when they put in the IV) and he looks forward to the bacon and treats he gets during treatment. At first I was not happy about giving him this powerful drug, but we really didn't have a choice. I hope it will work for a long time.Good luck.
 
I remember Max also talking about wanting to feel normal. Not that long ago he said that now he is just like everybody else. I guess, this is a good thing.
 
My son was on Remicade, but unfortunately was one of the few that had an allergic reaction to it. The 3 times he had the infusion, he didn't like the thought of the IV, but always said it didn't hurt. He then watched movies and ate food. He is now on Humira and is doing great. He just turned 11. I was also really scared to start these meds...if you search my posts you'll see that I was a wreck with worry. I will always remember something my son's GI doctor told me when I was fighting to move on to a 'biologic' drug. She said, "Why are you so willing to keep giving your son prednisone but refuse this drug?" She said prednisone has side effects that are bad too and non reversible. That really made me think. She said these biologic meds have less side effects in her opinion. My son has said "I'm normal now...just like everyone else in school" . I also think the longer we keep our young kids' intestines from inflammation and damage the better off they'll be when they are older. I believe they will come up with something even better someday...and our kids' intestines will be healthy because they've been in remission. Our GI doc said this is "new school" approach and top down approach. I still hate 'shot day', but its quick, we do it at home, and my son says it doesn't hurt...he says it feels kinda wierd and then numb. Within minutes he's running around like nothing happened. He has also said the icing his leg is worse than the shot! Before, when he was flaring, he seemed to get sick often...now he never gets sick. He's been around kids with colds, etc...and he doesn't catch it- so I think being healthy in his gut is making him stronger. On the CCFA site there is an article about the risks vs benefits of IBD drugs...I posted the link awhile back. I'll look for it.
 
My son was diagnosed last fall and immediately started remicade since he was so sick. Remicade immediately put him in remission. I could not believe how quickly it worked. We called it the magic drug because it was like he did not have Crohn's at all. But unfortunately we just found out last week that he has developed antibodies against it, so we are in the process of getting cimzia.
 
Yes, cimzia is a shot. The dr said the humira is a very painful shot because it stings while it's being given. Seems like I read on here that it's not though. My son's practice does not have any children on humira.
 
My son doesn't look forward to shot day either. They seem to come so quickly! He tells me it doesn't really hurt...but he "blows out about 50 imaginary candles" during the few seconds the drug is entering his thigh. I think it going in so quickly is what is uncomfortable. My son is the type tho to tell me "Mom...its fine...stop worrying...Its over...it didn't hurt" He doesn't like to see a worry look in my eyes. The quote I see over and over on this forum is sooo the truth..."It is what it is". Not a choice to it...not doing anything would be far worse and these kids know that all too well.
 
Thanks everyone, Decision made. Brandon was vomiting with blood in it on Thursday when we dropped to 15mg of prednisone, so we had to put the steroids back up. Weighing up the side effects of prednisone versus Remicade, I think Remicade is the best choice now. So Wednesday is the day....

I'll let you know how it goes..
Trina
 
Good luck with your son and I really hope this helps him. So hard to see a child suffer. Hang in there both of you!
 
I hope Remi is the one for Brandon, Trina! Get that boy back in school and loving life again!! Good luck and let us know!!
 
Good luck :)

I was on remicade for a year , going back on it soon hopefully. It was AMAZING. I was going through a really bad , long flare to the point where IV steroids didnt help. I was getting infections all the time , couldn't eat, I was anemic and too poorly to get out of bed except for to run to the toilet 20+ times a day. Even the 20 min car ride to the hospital to be admitted for remicade was a genuine struggle!

As soon as I had remicade I went into instant remission , it was like a miracle! That night I went home and had a curry and cream cakes for dinner , which was something I wouldn't have dreamed of the day before , then I had enough energy to take my dog for a really long walk for the first time in ages!

So yeah , long story short , I was nervous because of the potential side effects but it was all worth it :)

I really hope you get a good result on remicade too! Keep us posted
 
Lucy,
Why did you stop taking it? When did you stop and won't you have anitbodies now? I wish Remicade would've worked for us...the 'only every 8 weeks' looked nice :)
 
We are on the way back from the hospital. Brandon did great with the Remicade infusion. Pain level has already dropped from8to a 2!! Lets hope this is the one.
Trina
 
I second that Scrapper1264!!
Good job Brandon! If keeps working beyond the induction period, just keep on doing it...don't miss any doses! I talked with the Remicade Rep in the KS area. He said he himself has been on Remicade for 5 years. He said he went from making plans to have his colon removed to remission. After his first year on it he had another colonoscopy and his dr told him it looked like a different colon altogether! He stressed that the key with Remicade is to not lapse in treatment. He is religious on every 8 weeks. Never misses. We knew on third dose during the induction period that Brian was allergic. (I also noticed, in hindsight, that he wasn't having the 'great feelings' like he did after the first dose. In the first 2 weeks its was like a miracle after that Brian would say, 'its kinda working') His body had probably already started not liking it. But don't worry, being allergic is slim, but if it happens to not be the 'one' thing...you have Humira to fall back on.
 
Trina - AWESOME! I hope he has a complete response and years of great health :). There was a young lady in our support group who had been on Remicade and in complete remission for more than 6 years. She was going strong and no plans to change. It is that miracle for so many kids - I hope it is one for you!!!
 
Julie,
How's Claire doing? Do you think you will try Remicade? These biologic drugs do work so well. They give our kids such relief and they can be normal, happy kids again.
 
Aww thats such a good result Saphira , this post has made my day :)

Briansmum - I had to sop infliximab after 12 months because it was NHS funded , and the application was only for 12 months worth. as I was doing so well we thought we'd give it a go without as my consultant said sometimes treatment like infliximab changes the natural course of the disease and that means I might not need it anymore? But my last infusion was end of october , so I would have been due another one end of december , but my symptoms didnt come back until feburary. My nurse said they only worry about the risk of developing antibodies if you've been off it longer than a year , which I haven't so fingers crossed!!
 
Wow, Remicade is a miracle drug. Toby (My 7 year old) said it feels like his brother came back. Brandon is a different child very minimal pain, joint pain gone, eyes better, sleeping, it's only been 4 days but unbelieveable change with the Remi!! I hope it lasts..
Trina
 
I think remi is likely the best med out there for crohn's. When I got it I felt better literally 1 minute after. I was super happy.

You can read numbers on remi (called Infliximab) here too: http://www.acg.gi.org/media/releases/ajg201158a.pdf It's by far the most effective drug atm.

But it's a very powerful drug, doc said it's hundreds times more powerful than imuran. It's also a hard drug to make. They can't administer Remicade on a weekly basis, it's done yearly at max here, even though some clinics don't go by that rule. It's a last solution drug here, if all else fails they do Remicade.

In between they give imuran. But they are very careful about giving Remi, even though it is a magical drug for most.
 
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Saphira said:
Thanks Carol,
My biggest problem is not having a true diagnosis. Brandon was diagnosed 2 years ago with CD and then we swithced to a new Doc, and he was not sure... so we did the prometheus test nad it siad pattern not consistent with IBD. If it isn't IBD what is it, and should I really expose my child to a drug formed from mice antibodies and cancer cells if he has something different?? Arghh.... Just not sure...
Trina
Click to expand...

The only sure way to know if someone has crohn's is a colonoscopy. They take a tiny tiny part of the intestin and check if the patient has crohn's. It's the only 100% sure way to know if someone has crohn's. I'm really surprised they would administer remi without a colonoscopy though.

I've been to ER so many times just being there and know my doc very well. Here, when a patient comes in and they suspect he might have crohn's, they check the blood and sometimes an MR scan. If those results indicate crohn's, they will do an colonoscopy to make sure that it is crohn's. Then and only then they decide on medication.
 
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My husband has Very similar symptoms to my son. Last May he had a colonoscopy, we were so sure my husband's test would show crohn's. Surprisingly, they told him he did not. Irritable bowel syndrome was their diagnosis. My husband is now watching what he eats.
 
Brian'sMom said:
Julie,
How's Claire doing? Do you think you will try Remicade? These biologic drugs do work so well. They give our kids such relief and they can be normal, happy kids again.
Click to expand...

Hi Brian's Mom - Claire is hanging in. Sorry I'm just seeing this!! Not sure if you saw the other post but she is having a flare. We have added Entocort which will hopefully address the issue since the flare is isolate to the large bowel.

I would have tried Remicade in a heartbeat. In fact, at diagnosis, that was the direction we were headed. However, Claire cannot have any anti-TNF drugs due to a neurological problem she had a couple of years ago while she was on Enbrel for her JRA. So Cimzia, Remicade, Humira, etc are out for us.

We have had some conversations about other biologics for the future. The plan right now for us is if the 6MP, Entocort option fails, we'll try Methotrexate. If Methotrexate fails, we'll have to look at some biologics not in the anti-TNF family. I'll be wearing you all out if that happens!

Now Trina back to your son :) - how's it going???
 
Julie,
I remember you saying that now...the neurological problem, sorry...my memory :(!!

Trina, I was wondering how your son is doing also.
 
Do NOT apologize! There's a lot to keep up with for all of us.

Okay, Trina, let us know when you can!
 
HI Guys, Sorry I was distracted with work!!
Brandon has had an amazing response to remicade. His abdominal pain has now gone, first time since November, no more D, no more joint pain. He has energy and has been playing outside again!! However he has had a few side effects. A headache in left temple area that comes and goes. Worse in bright light or when running around. He has some chest pain on Left (but appears to be soft tissue?) I called the Doc about these and he said just to let him know if they got worse. He has been improving with all of his other symptoms so well, and been overall a different child. Tonight he has a headache left temple area that comes and goes, sometimes sharp and stabbing, and has pain in the left eye in bright light. It looks like his pupils are sometimes a little uneven too with the left one more dilated. He has also had itchy back, but no rash.
I'll keep an eye on him and if it's still there in the morning or gets worse I'll call back. It's not that bad because he's wrestling with his brother right now. Also he is still weaning from Prednisone, so some of these side effects could be from that.

I guess for now we wiat. I hope he's not going to have a reaction, the changes are miraculous!
 
I hope it keeps working for him Trina!! It's gotta be amazing watching him play and laugh after so much pain!
 
So glad to hear he is feeling better. You know he is on the road to recovery if he is fighting with his brother! LOL

Take care,
Vicky
 
If Brandon is feeling great, seems like he's not going to have a reaction. Sounds like you guys are on a good road. I'm a BIG worrier and I spent all of December and January doing just that when my son was trying Remicade. Mostly worrying because he wasn't doing well (crohn's symptoms returned after 2nd infusion. Maybe because he was one of 10% that couldn't do Remi). If I've learned anything from it all it's that- if there's going to be a reaction...you'll know soon enough...and then you'll do the next option. And then that will be the miraculous thing. We have many options to exhaust. My son's doing well on the other biologic, Humira. I wish now I'd have just stayed calm back then and just 'waited' it out like you're doing. Good luck, your son is in my prayers. Glad to hear he's back to his old self...an energetic little boy :)
PS my son has some side effects too: Dry skin, stuffy nose. Hasn't had the headaches, but I've heard of that happening with prednisone too.
 
I am so glad he is back to his normal self! I remember when the doctors were trying to figure out what was wrong with my son - his personality totally changed with all the pain he was going through. After the diagnosis and first dose of remicade he was back to normal too.

Did you son experience the headache during the infusion? My son would have an excruciating headache for about 10 minutes an hour into the infusion. After 6 infusions he was done since he had developed antibodies against the remicade. Hopefully the methotrexate he just started will do the trick.
 
Hey Trina,

So great to hear that it is all so far so good with Brandon. May it keep on keeping on hun and keep us posted, I'll be looking out for updates!

Loads of love, :Karl:
Dusty. xxxxxxxx
 
Hi Guys,
Brandon saw the eye Doc today, no underlying eye disorders, very little inflammation left eye, that was probably a reaction to remicade. Brandon is much better. Spoke briefly to the GI Doc, they will probably give him Benadryl prior to his second infusion on May 13th. He is doing so well, in complete remission from his GI symptoms and no joint pain!! Thanks for everyones concern.

Trina
 
Excellent news Trina! I am so happy for you that all is going so well...:):):). May it last a lifetime hun.

:mademyday:

Dusty. xxx
 
What a relief Trina! I love hearing good news when it comes to our babies especially!! Seems like May has been a good month for a lot of our kids :)
 
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son with crohn's

Our son is getting insurance approved for Remicade treatments as well. Everything we do and all the decisions we make are nerve wracking. Hoping this works. If not, we're looking at a feeding tube. Yuck! Our reasoning for the change is that he is not growing and has not since the onset of Crohn's at 13 years of age. He is now going to be 16 and his doctor's are concerned with his bodies lack of nutrient absorbtion. Hoping that all settles down for him soon and we're making the right choices. Good luck! We all need it.
 
cklamitie said:
Our son is getting insurance approved for Remicade treatments as well. Everything we do and all the decisions we make are nerve wracking. Hoping this works. If not, we're looking at a feeding tube. Yuck! Our reasoning for the change is that he is not growing and has not since the onset of Crohn's at 13 years of age. He is now going to be 16 and his doctor's are concerned with his bodies lack of nutrient absorbtion. Hoping that all settles down for him soon and we're making the right choices. Good luck! We all need it.
Click to expand...

My DS (12) will start Remicade next week. While anemia is his main problem, he has also stopped growing. Which is a big problem for him since his twin brother is now a good 3 inches taller than him and his younger brother is only an inch shorter. He has started drinking an ensure everyday and I just found vanilla instant breakfast, so we will add that as well.

I hope this works for your son. When are his treatments going to start?

Take care,
Vicky
 
Hi cklamitie,

I so hope Remicade does the trick for your son!

Seems as parents are perpetually between and rock a hard place, always trying to choose the lesser of two evils...:eek2:

Sending loads of luck your way......

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxx
 
Reading this helped me so much!

Hi everyone,
My son Peyton starts remicade tomorrow and I've been just a bundle of nerves. I'm hoping he does well on it and goes into remission. I'm so happy to hear all the positive stories on this forum,

thanks so much everyone!!!
 
Goodluck Peyton and Peytons Mom. Brandon has his second infusion tomorrow at 12:30, if they will let him have it, he still has a wierd rash.

Trina
 
Good luck to everyone today. Please let me know how it goes. Garrison's is at 10 on Tuesday.

Take care,
Vicky
 
thank you!

Heading to Peyton's appt in a few minutes, the hospital is 2 hrs away, so its going to be a long day today!

Prayers to everyone,

darlene
 
Hey Vicky, Saphira and Peytons mom, :bigwave:

Wishing your precious children all the luck in the world with their infusions!

:goodluck::goodluck::goodluck:

Please let us know how they go.

Thinking of you all, :ghug:
Dusty. xxxxxxxx
 
Hello all!
Well, Peyton had his first remicade infusion today, the appt was about 2 hours away, but when we got there they had all kinds of stuff for kids, wii, xbox, movies, food, soda's, and we had a private room. He did really well, the total infusion lasted about 3 hours but by the time we left we'd been there about 4 total. He felt good thru the whole thing, no reactions. He slept on the way home but he gets car sick so he likes to sleep whenever we have to drive over an hour. He had a really good appetite thru the whole injection (because of the steriods they gave him) so he was asking to eat contantly which NEVER happens! We can barely get him to eat most of the time! Its been about 4 hours now since the infusion ended and he's doing great. We will monitor him just in case there's a reaction, but the nurse said he did so well, she didn't expect he would have one.

Thanks for all of your support, I really needed it!!!

Darlene
 
happydance.gif
Excellent news Darlene, May it last forever hun!!!

:mademyday:

Dusty. xxx
 
How'd it go today?

Hi Trina,
How'd Brandon's appt go? When was his first infusion? Peyton had his first today and did awesome! His next one is in 2 weeks...



Saphira said:
Goodluck Peyton and Peytons Mom. Brandon has his second infusion tomorrow at 12:30, if they will let him have it, he still has a wierd rash.

Trina
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Petyons mom said:
Thanks Dusty!!!! How do you do it with 2 kids w/ crohns? Wow, thats amazing!
Click to expand...

Haha, buggered if I know! Seriously though, I wondered myself when Matt was diagnosed, I mean I was/am a worry wreck with Sarah and she has been in remission for nearly 5 Years! I guess when it comes to your kids you are capable of anything, you can always find the extra that's needed ay?

Dusty. :)
 
So Glad Peytons infusion went well. Brandon's did too. Our drive is about 2.5 hours each way. We had one small problem, the IV infiltrated the tissues about 10 mins into the infusion, so they had to remove it and put it in the other hand, at that point Brandon nearly lost it a few tears, but he recovered well. No reactions, he is dosed up with benadryl and claritin. He still has the rash but it's fading. He slept all the way home. I was exhausted too. Next one is June 9th! Fingers crossed for no side effects.
So happy for you and Peyton, i hope Remi is the one for you!
Trina
 
So happy for you both, Darlene and Trina.
Hey Trina, I myself had premature pregnancies back in the day...so I had lots of IV's...I always hated them in my hand, I would do them in my wrist, so when Brian was doing the Remicade, I suggested he have the IV put in his arm somewhere instead. They would put it just below the inside of his elbow. It helped with the pain. Easier to find a vein too. I always remember the cold feeling in the hand was bad when they would flush it or if the meds were cold. Just a suggestion.
You're in my prayers, Kathy
 
Thanks for the support! Trina, glad brandon's went well too! Peyton's IV was in his arm not his hand, he did well with that. He has huge veins anyway, they had no problem locating one! We are all doing the Take Steps for Crohns and Colitis this evening, waiting for everyone to show up then we are heading to the walk in Manchester, NH. We raised about $1600, my goal was $2000 but hey, every littlle bit helps, right?

take care everyone!!!!
 
So great to hear all went well Trina!
Woot_Emoticon.gif
Fingers and toes and everything else crossed hun that all continues to go well...:hug:. And kudos to you for the fundraising...:medal1:. You're right, every little bit does help!

@Kathy, excellent point. Matt has had heaps of IV's in the last six months and he reckons the only comfortable place is the elbow, hated them anywhere else.

So happy for you all that all is going well, :):):)
Dusty. xxxxxxxx
 
Garrison had his infusion yesterday. He did real well, did not enjoy it when his first vein blew, but handled the 2nd IV like the trooper he is. He is a little tired today but stayed at school until last period.
If he is going to have a reaction, such as a rash, will it happen immediately or can it happen a few days later?

Take care,
Vicky
 
Hi Vicky,
thats great that Garrison's infusion went well (other than the need for a second IV). I think if he was going to have a rash it would have happened by the next day. if he was okay with no signs of a reaction 24 hours later, you should be all set. Thats the experience we had with Peyton. No signs of rash or any other side effects. I would check with your dr though, if you see anything unusual a couple days following. Everyone is different. Good luck and let us know how you are doing! Peyton has his second infusion scheduled for next friday (14 days from the 1st). We are keeping our fingers crossed that there are no incidents from that one and that this drug works for him.

Darlene
 
@Vicky...Excellent news hun! I hope all continues to go well...:goodluck:

@Darlene...:goodluck: for next Friday!!!

Much love, :Karl:
Dusty. xxxxxxxx
 
Darlene,
Thanks for the information, I am trying so hard not to be paranoid, but.......
I hope all goes well with the next infusion, and the next, etc.
Thanks for the love Dusty, you will never know how much your support means to me.

Take care,
Vicky
 
Hi Vicky,
I know, its hard not to be paranoid, especially when you hear some of the negative reactions. How old is your son? Mine's 10, almost 11... and Yes, Dusty, thanks for the love!
darlene
 
Garrison is 12. So he is old enough to understand everything that is going on and we have included him in the decisions on treatments, etc. He has handled it so well, I am amazed by his maturity through it all.
How is Peyton handling everything?

Take care,
Vicky
 
HI Vicky,
Peyton is handling things very well too, very mature, its amazing how strong they are! He knows that this will hopefully help him feel better. When was garrison diagnosed???

Peyton was diagnosed in winter of 2007....

darlene
 
Garrison was diagnosed in this fall. I caught the anemia in May of last year and soon found out he had bleeding uclers, but we thought it was due to an infection. I fought the crohn's diagnosis because their is no family history and the only symptom he has is bleeding uclers.
Garrison was a preemie and had a severe case of NEC which makes him a very unusual case. Why can't my kids be normal. LOL
 
Hey guys,

I have to thank you all for starting these threads about the biologics...Remicade, Humira and Cimzia. My kids have not been down that track but if they ever do I can't thank you all enough for putting down your thoughts and experiences, as a parent, so I can store that info away just in case.

Kudos to you all and your kiddos! :thumleft:

Loads of love, :wub:
Dusty. xxxxxxxx
 
Hey Vicky,
He was diagnosed this past fall and they are doing remicade already? Did they try other things first that didn't work? What is NEC? Don't worry, you're kids ARE normal, just not to what we think ha ha!!

We have no family history either, but I guess that isn't always the case with crohns. Peyton was diagnosed 3 1/2 yrs ago, and had a colonoscopy recently and I was secretly wishing they were going to say that they were wrong and he didn't really have it.... unfortunately, that wasn't the case. Stay strong, course, they are stronger than we are!!!!

Keep us posted!!!

love,
darlene
 
Vicky,
I just looked up NEC and read some interesting facts. This sheds a little light onto how my son may have developed crohns... It says one of the theories is that if you had a difficult birth where there was lack of oxygen to the baby, this can cause problems with the intestines of the baby. Wow, I did have a difficult birth with him and he was blue when he was delivered, there was a lack of oxygen b/c the cord was wrapped around his shoulder and each time I had a contraction, we would loose his heart beat. I'm wondering if that had anything to do with it. He had a difficult time with formula, was allergic to everything and had blood in his stools. We put him on lactose free formula at the time, and he seemed fine. He didn't start having crohns symtoms til he was around five years old, but went undiagnosed til he was 7....

thanks for this info, we need to be armed with all the information we can get!

darlene
 
Darlene,
When did Peyton have blood in his stool as an infant? NEC usually shows up around week 2 in low weight babies. Did the dr. run any test or did they just assume if was an allergy? The NICU nurses discovered blood in his stool at day 4. It was just a tiny speck but they started treating him right away and I believe that is what saved his life. (He was 80% affected.)
Would you share with me where you got the information concerning difficult birth and intestinal problems? I have tried to find a link between NEC and Crohn's and the only study I have found discusses enteric glial cells. I wonder if there are any other NEC babies on the boards that also have IBS.

Dusty,
Do you recall if anyone else has mentioned NEC or intestine problems at birth? Maybe I should start a thread.....

Take care,
Vicky
 
Hey vicky,
whats your email, I'll forward you the article. We noticed blood in his stools with in a few days, I remember because my mom was visiting and helping out and she noticed it. They told me it was an alergy, that he was allergic to the soy protein and switched him to lactose free formula....

darlene
 
I also had a difficult delivery with Max. He weighed 9 lbs 14 oz and because of his size, his head came out and it was a while before they could get the rest of his body out. He almost didn't make it. I wonder if this has anything to do with him getting Crohn's. Nobody else in our families has Crohn's. On a different note,when getting the IV put in,I would highly recommend a numbing cream called Emla,it works great.
 
Interesting, I'm going to bring this up to our doctor when we see him this week. Not that we can do anything about it now, but it would be good to be able to have some understanding around the cause. Peyton used to always get the numbing cream before getting his blood drawn, he doesn't need it anymore because he's so used to it, but it definately helps them!!!

darlene
 
Trying Remicaide

My son was put on Remicaide and had a very bad allergic reaction. After the fact, someone told me that they should have given him Benadryl. That might have made a difference. Good luck.
 
Hi Bonnie,
We were afraid that Peyton may have a reaction, but they gave him Benadryl and Tylenol together as a preventative, also they set the drip at 6 different speeds, the first hour was very slow, then it sped up. this helps with the rate that the meds are injected. I'm sorry that your son had a bad reaction, what are you doing for treatment now??
darlene
 
Some kids just build up antibodies to Remicade. I was told it was due to the mouse protein in it. My son was given Benedryl every time...yet on the third infusion he couldn't breathe after just a few tsp's of the Remicade went thru the IV. It was on a very slow rate. Our doctor even did the steroids with each treatment. Some kid's immune systems just won't tolerate it. Also...They they did this buzzy thing on his arm just above where the IV was going in...he didn't feel the stick either.
 
My son was always given benadryl, prednisone and tylenol before the infusion. With his last infusion he was given zofran (anti-nausea med) since he always vomited or got the dry heaves about 30 mins into the infusion. He didn't get sick, but after that infusion we found out he had developed antibodies against it. We start humira tomorrow and hopefully it will work.
 
scrapper1264 said:
My son was always given benadryl, prednisone and tylenol before the infusion. With his last infusion he was given zofran (anti-nausea med) since he always vomited or got the dry heaves about 30 mins into the infusion. He didn't get sick, but after that infusion we found out he had developed antibodies against it. We start humira tomorrow and hopefully it will work.
Click to expand...

It will work! I'll be saying a prayer for you guys tomorrow. Now that we've been on Humira for around 4 months, developing antibodies against Remicade was a good thing! Humira is so easy and fast. My son felt good quickly after his loading doses.
 
Brian'sMom said:
Some kids just build up antibodies to Remicade. I was told it was due to the mouse protein in it. My son was given Benedryl every time...yet on the third infusion he couldn't breathe after just a few tsp's of the Remicade went thru the IV. It was on a very slow rate. Our doctor even did the steroids with each treatment. Some kid's immune systems just won't tolerate it. Also...They they did this buzzy thing on his arm just above where the IV was going in...he didn't feel the stick either.
Click to expand...

Kathy, was he fine with the first 2 infusions? and then a reaction at the 3rd? What did they do when he was having trouble breathing? Did stopping the IV return the breathing to normal? Now I'm getting nervious, Peyton's 2nd one is friday....
 
Peytons Mom,
Don't be nervous. The staff in the infusion floors are sooo ready for this. They are quick on their feet. I was a bit shook up, but it all got back to normal quickly. Here's what happened: He had his reaction on his 3rd infusion. It was about 15 min in. He started to clear his throat. Then a bit more often. I looked at him and he said, "I'm fine". Then he cleared it again. I read somewhere that that is something to listen and look for, so I ran to get a nurse just in case. When we got back his face was red and he looked scared. They worked so quickly, room full of people, and the first thing they did was disconnect the IV. Then they gave him strong dose of benedryl into the IV port. They held oxygen up to his nose and hooked up oxygen thing on his finger and a blood pressure cuff. Within minutes he was breathing fine with the oxygen blowing on him. His oxygen levels took about 10-15 minutes to get back into the 90's with his own breathing, but the nurses said it usually does not take 10 min or more. They just kept the oxygen under his nose for longer. They kept talking to him...yet he was real groggy from the big dose of benedryl. (Added to the benedry I had given him by mouth prior to the infusion!) After 3 days they wanted to try it again...but at even a slower rate. After 5 min of the Remicade IV my son said his throat felt itchy. They put the thing on his finger and his O2levels were down again. So this time Brian knew what it felt like and caught it early. He needed no oxygen this time. He recovered fine after both. Had NO problems at home. NO rashes, etc. They had me do benedryl around the clock after the first time, just in case he'd have any residual effect, but he was fine. Brian has since said, "I could breath a little, it was just like my throat was being squeezed". Again, Don't worry, it may not happen at all. It's rare...I think 10%. Remember, it must've not been too horrifying to him since he tried it again just 3 days later! (He really wanted the Remicade to work) 3 days after that he did loading dose of Humira. These crohn's kids are tough!
 
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Thanks Kathy, this makes me feel so much better! This whole thing is frustrating, the waiting and wondering, will this work???

thanks again!!!
darlene
 
Darlene,
I truly know exactly how you feel. I have the luxury of looking back now and knowing that it all worked out. So use that and take a deep breath and try not to worry. Surprisingly, I think the best thing worked out for our situation. But boy did I lose a lot of sleep, and cried a lot of tears! I was a wreck during that induction period!
 
Darlene,
Just thought of something. Since Peyton's been feeling so good, I would think that his body is handling the Remicade just fine. My son wasn't feeling good well before the 3rd infusion. His cramps had returned and he'd say 'Remicade is kinda working, but not much!' I've always wondered if his body was already rejecting it.
 
Hi Kathy,
Peyton will have a couple really good days, then a bad one, then back to good since the 1st infusion about 11 days ago. I think on the days that he feels good, he eats way more than normal, so by the next day, his body isn't used to it, we'll see how he does after friday, I really hope this is it! Where do you guys live? we are in southern NH.

how's the humira working???
I noticed that brian takes a vitamin D and zinc, did the doctor recommend that?
Peyton is on:

Pentasa 4xday
Entocort (weaning off of now, 2x day, was 3)
6-MP (3/4 tab)
Nexium (1 daily)
Probiotic (1 daily)
Aloe (2 x day)
Omega 3 fish oil (1 500mg capsule daily)
Multivitamin

He was put back on the Entocort around christmas time to try to control his flare, they kept him on a maint. dose. We are weaning off of that now, but I think we'll stay on the Pentasa and 6MP for a while along with the Remicade, not sure, I'm meeting w/ the doctor on friday before his infusion,

:)
 
Darlene,
The biologics fix the problem. Both Remicade and Humira. You just have to find what works best for your son. I've heard wonderful things about Remicade and that it works for a longgg time! I like how you only have to do it every 6-8 weeks. I just bet Peyton will do fine. My son's SED rate was really high (73) and his crp was 3.6. It took awhile to fix all the inflammation he had.
The Humira is now working for Brian. His blood work from May 18th showed his SED rate is down to 14 (1 notch from normal.) But he still has some intermittent problems here and there-food related I think though, not inflammation related. We're now paying attention to the foods that seem to bother him. They checked his Vit D levels back in Dec 2010 and it was really low. But this last test showed normal, so we can lay off the extra Vit D.(Its also summer!) The doc kept him on the Pentasa for the next 3 months. If his SED rate drops more, then he can stop taking that also. As for the zinc, back when he was having lots of diarrhea they wanted him to take 30mg. I have a friend that swears she thinks it helps her crohn's son stay healthy. I forgot to mention that during the induction period my son developed an abcess on his bottom. He was really sick. He feels great now. It just takes time to get it all working in the right direction. You'll get there too.
Sorry so long, and oh yeah...We live in Kansas.
Did your DR recommend the Aloe and fish oil? What kind of Probiotic are you doing?
 
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I am constantly amazed by what I learn on this board and how much comfort it provides. Every time I read y'all's (Texas girl) post, it gives me more knowledge and makes me more confident with the very hard decisions we are being forced to make.

Garrison and I have both been walking on egg shells, waiting for an allergic reaction. Kathy, you have eased my mind that we are looking good, at least until the next infusion. :wink:

Darlene, thanks for letting me know I am not alone in the worrying club. Believe it or not, that makes me worry less. I sent you a PM.

Bonnie, Our dr gave Garrison Zyrtec instead of benadryl as well as tylenol. His drip was very slow and lasted for over 4 hours. I would ask about medication before the next treatment.

Hope everyone has a great tomorrow.

Take care,
Vicky
 
HI Kathy,
the doctor recommended the fish oil from day one. He take 500 mgs/ 1 per day. Most fish oil capsules come in 1200 mg, you need to look for 500 mg ones, or ask your pharmacist or order you some. I forget what brand we use, Peyton's dad takes care of all the meds, he fills up the M-F containers and gives them to me (we are divorced), but I can find out the brand. Also, we decided to try the Aloe ourselves. He's been taking it for about 3 years now. We use a capsule form, from the company AloeElite. They have a website. Its pretty expensive but we think it helps, the doctors doesn't really have an opinion on the Aloe one way or another, but he said it can't hurt! As far as probiotics go, we switch between Florastor and culturelle. They are both expensive, the florastor is more. I recently did some research and foung a cheaper brand by Jarrow, it has the same thing in it. I ordered it off of Amazon, hasn't come in yet. You can go on the websites for the florastor and culturelle to see what they have in them, then google it to get a cheaper version. The idea is to switch off every other week or so, so they get different stuff introduced into their systems. He just takes ONE capsule/day for that. I'm gonna ask our dr about the zinc, too!

Vicky, I just emailed you the article about NEC. :)

Have a great day ladies, we finally have a beautiful sunny day here in New Hampshire!
 
Kathy, I just found the name of the probiotic that is a substitute for Florastor:
Jarrow Formulas Sacharomyces Boulardii, it was like $15 for 90 caps, vs: Florastor is $35 bucks for 50 caps! So shop around. Culturelle isn't too bad price wise but I'm going to do some research on that too!
 

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