12y/o son just diagnosed...Remicade?

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Grady'sMom

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Jun 24, 2015
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Hello! My 12 year old son was just diagnosed with crohn's. About 6 months ago we noticed some weight loss and took him to the pediatrician. All the blood work came back normal. Then in April he had a perianal abscess with a fistula. Biopsies, more bloodwork (now abnormal), MRE, and colonoscopy have all confirmed crohn's.

The GI is now suggesting we start on Remicade as a first course of treatment. I'm just here getting some information and support.
Thanks for letting me share.
Teresa
 
Hi Teresa.

My son was also diagnosed around that same age - also after weight loss and perianal abscess and fistula. He did have surgery for the abscess / fistula. His Crohn's was attacked with Pentasa, Mercaptapurine, prednisone, Nexium and hyoscyamine. The prednisone was key for my son in bringing about remission. He did not have to do Remicade infusions. He has maintained remission with Pentasa, Mercaptapurine and Nexium alone. He gets occasional perianal abscesses, however they've been treated successfully with antiobiotics alone. He's 19 now and has had no major issues.

I also have Crohn's. When I was first diagnosed at age 26, my first meds were Asacol, Mercaptapurine, prednisone and Nexium. Those alone did not get my inflammation under control, so then my doctor added Remicade infusions. So, for me, prednisone and Remicade were both key in bringing on my remission.

I know what a hard road this is as a parent and as a patient. It's hard to say if Remicade is right for your son. I would lean towards trying prednisone, mercaptapurine, pentasa first and then on to Remicade afterwards if those meds don't start getting the inflammation under control. I say this because all of my research over the years has led me to idea that biologics (Remicade included) are to be used after first trying the other medications. But, all of us Crohnie's cases are sooooo different, and we all respond uniquely to each treatment. There's no real right or wrong answer.

Hang in there! This is a long journey. I hope all goes well in obtaining remission for your son!! Keep us updated.
 
Thank you for taking the time to post! It is so hard to know what to do. We are supposed to call the doctor with our thoughts on the remicade tomorrow. I get the impression that he wants to treat him asap. There was talk of "maximizing his growth potential" since he hasn't started puberty yet. Most of the information I have read about the drug is that it is for severe cases which haven't responded to other therapies. I'm not sure he fits that description. Is this is a "nip it in the bud" kind of drug? It seems so aggressive. This is so new I don't even know what questions to Ask or what alternatives are out there. Any advice is appreciated.
 
A lot of GIs do now follow the top down approach due to studies that have shown that the introduction obiologics shortly after dx can lower the risk for future surgeries. Also, as your GI suggested introducing biologics early can give kids the best opportunity for full growth potential.

There are a number of parents that have kids on remicade here on the forum. My son went straight to remicade right after surgery and we saw really good results symptom wise.
I'm going to tag some others Mr chicken, crohninct, maya142. There are other that will probably be along as well.
 
Please check out our parents section

http://www.crohnsforum.com/forumdisplay.php?f=49

You will meet lots of parents there who tons of exp with all different meds

My kiddo was dx at age 7
We tried bottom up ( pentasa then 6-mp then Mtx )
After a year of no improvement and my kid still sick the GI finally suggested we try remicade .
7 weeks after his first infusion I had my kid back
Wasting time on the lower meds increases the amount of not so normal life
And increases risk of surgery later
Kids tend to have a much more aggressive disease course than adults
The disease spreads and changes over the first ten years after dx for kids
Most go from inflammatory to stricturing/fistulizing
Add in surgery rate for kids is 75% within the first 5 years.
Risks with biologics IMO is way less than 6-mp/Aza which has a higher cancer rate

If you are naive to immunosuppresants and start with biologics you don't have the t-cell lymphoma risk you get when the two are combined OR you have any past history of 6-mp/Aza

Knowing what I know now (DS is 11 and been on biologics for 3+ years)
I would have pushed for those first

Recap pentasa did nothing at all
6-mp did next to nothing and went to his liver
Mtx by itself wasn't enough and he got vasculitis
Finally remicade let him swim competively and enjoy the third grade
So next extra colds etc for all of 3, 4, and 5 th grade

We only added Mtx due to juvenile spondyloarthritis associated with Ibd
 
Welcome to the community. I can't imagine how difficult all of this is for you :(

Remicade is indeed aggressive and I understand your concerns. However, that your son has fistulizing Crohn's which is very serious in my opinion warrants the use of Remicade. It's what I'd do if our roles were reversed and I hate medications.
 
Thanks for all the input. We still don't know which direction to go. I think if my son were feeling sick, we would be much more willing to go right to the Remicade. But right now he has no stomach aches, is eating well (although not as much as I'd like him to for weight gain), and has energy. He does have diarrhea, which only started after he began on the flagyl (he's on that and Asacol. He does have a small open abscess (that's not causing any pain) which is our greatest concern, and I know the reason the Doc wants to start the Remi right away.

I don't want to "waste" any time starting on lower medications, but at the same time, I'm still hesitant to jump in with the Remicade because he's feeling so good. I want to want him to get it, (if that makes any sense) but I just don't. Help me sort this out in my head!
 
I absolutely understand your being on the fence on this one.

However, fistulizing Crohn's disease is very serious. I get that he's feeling pretty good right now, but there IS active inflammation doing its best to create scarring which leads to strictures which leads to other terrible issues in addition to the fistulas.

I have a 19 month old who is sick right now and I'm agonizing about whether he should take antibiotics. So I can't imagine how hard your decision is. It's certainly easier for me to make the call from this side of the keyboard. But as someone who has literally read thousands and thousands of accounts of Crohn's disease and has a deep understanding of the seriousness of what you son is experiencing, I still say go for the Remicade.
 
My son and I are new to this support group but not to Crohns. He is 14years old and has had Crohns for just over a year now. We have tried so so many different medications excluding Asacol. Even though he was seeing a peds GI doctor he was not getting the help he needed. We was spending a lot of time in the ER.

I started taking him to Cincinnati Children's Hospital in May of this year. I can honestly say they are a blessing from God. I love the ideal that he has several doctor on his team. It's not juss one dr with one opinion telling you want you should do for your child.I was like you. I was so afraid of letting him start Remicade but everything we had tried was a failure. I was tired of seeing him cry with stomach pain and him not being able to eat. He was so so thin. He started Remicade June 1of this year and he is doing wonderful. He has gained weight and has been pain free since.I know that Remicade is a terrifying medicine cause I struggled letting them start him on it but now that was the best decision I could have ever made for him.

I wish you and your child luck and I hope that you can find what is best for you all!!
 
Thanks to all of you! We had a follow up apt with the surgeon who first saw my son and he echoed the gi doc's recommendation of the Remicade. I wish my gut would catch up with my head about this medication!
 
It may never catch up. Logically, you know this is very likely the best treatment option available to him. But emotionally and on an instinctual level, the idea of giving him something like Remicade is a terrible feeling.
 
Yeah that*^^^
None of the meds give a warm and fuzzy feeling
With remicade I thought I would be physically ill watching him get an infusion ( he was only 8 at the time )
Once I saw the magic that med did versus all the other meds we had tried for him
He was a "normal " kid again
Coaches and teachers would comment on how well he looked etc after an infusion
They also knew when it was almost time for the next infusion
Smiling happy growing kids are what life's all about and sometimes the scary meds work miracles and get you back there quickly .

Good luck
 
You might want to check with your insurance company. Some require the "failing" of one med before they approve the next (the bottom up approach). That could make the decision for you.

Like David said though, having an abscess and fistulizing Crohn's classes your kiddo as severe right off the bat. This can be an invisible disease for some, esp kids, so you need to keep in mind that just because you can't see it doesn't mean it's not happening. Lots of kids here with perfect labs and asymptomatic, but then later find through scopes or MRE that they are a mess on the inside. I think if you have not just one, but two, medically trained docotors telling you to go for Remicade, I would listen. Having seen my son hit rock bottom, I wish I would have listened.

Puberty is a big deal and it's important to have the disease under control right now so that he can experience normal puberty and growth. You only get one chance with puberty.

My son has had a stricture, abscess, and fistula, all of which landed him in the hospital each time. He's been on Pentasa, antibiotics, and Azathioprine, but Remicade has been the only thing to work for his severe Crohn's. I do wish we would have started him on it right away and have often wondered if it would have saved him those hospital stays and surgery.

I don't know if that helps any. Good luck with your decision and let us know what you end up doing.
 
Hugs to you Grady's mom. As many have, said the decisions on what medications to put your child on is never easy. I hope that this forum is making some of them a tad easier. My son started Remicade at diagnosis, he was 2 months shy if being 3, it was terrifying at decision time. It was also the best thing we could have done for him. Remicade worked wonders FOR HIM. He stopped after moving states and some other factors in September 2014. He is now on several different medications, which don't include Remicade, and he is still not at the point he was when having infusions. I know everything is different for every person but for us Remicade was a game changer. Good luck in whichever road you take.
 
Hi there...I am actually writing this from my daughter's infusion.

My oldest daughter was dx'd at 12. She had very slight symptoms that were easily explained away as other things. Then he first flare hit. Two weeks of diarrhea and she was inpatient in icu fighting for her life. THe GI told us she had probably had the disease for two years and it was silently doing t's damage. Unfortunately this happens more than we like to admit. She was immediately put onto Remicade. Studies are showing that Remicade has the best safety profile.

I am a natural girl and was scared to death of Remicade but given our experience with my first daughter when my second was dx'd I was hoping for Remicade.

I would typically suggest trying a lower level if you are more comfortable with it but with pediatric patients the concern is growth, brain development and getting the disease under control as quickly as possible to limit the risk of surgery down the road. I will post a paper on that later. If you spend too much time with the lower level drugs and waiting to fail them, you could be missing growth potential and risking disease silently doing damage and as other have said, your son's disease is already a more severe phenotype.

My second daughter (11) was classified as mild. We went with middle level drugs, Methotrexate and Exclusive Enteral Nutrition. She achieved remission rather quickly but when we withdrew EEN her inflammation returned. 12 weeks later she was put on steroids to get the inflammation under control. In another 5 or so weeks we will withdraw the steroids again and see if inflammation returns. I feel as though we are just wasting time and leaving her a bit unprotected and am looking forward to the day the doc says Remicade.

Infusion is ending so more later...
 
Sorry I have not written sooner, I have not been on all that much lately between vacations and such. You can have crohn's activity even with normal bloodwork my son is a prime example of it and we assumed his crohn's was under control and spend several years trying to figure out why he wasn't growing/gaining weight. It was not until remicade that things were finally under control that we saw growth/weight gain and normal development. You are right at prime puberty time and it's important to allow as much opportunity for normal growth and development as possible.
We unfortunately wasted time because we didn't think he was bad enough to warrant remicade no stomach aches, yes I too wished he had a bigger appetite, no diarrhea. It was when we kept waiting for puberty to hit and nothing had happened and he had very little growth and almost no weight gain from 11-14. After several endocrinologist appointment to rule out other issues we had an MRE which discovered inflammation in the small intestine which had most likely been simmering the entire time regardless of his "normal bloodwork" He started remicade and puberty and growth hit hard that appetite I wish he had, well I got
 
Sorry I have not written sooner, I have not been on all that much lately between vacations and such. You can have crohn's activity even with normal bloodwork my son is a prime example of it and we assumed his crohn's was under control and spend several years trying to figure out why he wasn't growing/gaining weight. It was not until remicade that things were finally under control that we saw growth/weight gain and normal development. You are right at prime puberty time and it's important to allow as much opportunity for normal growth and development as possible.
We unfortunately wasted time because we didn't think he was bad enough to warrant remicade no stomach aches, yes I too wished he had a bigger appetite, no diarrhea. It was when we kept waiting for puberty to hit and nothing had happened and he had very little growth and almost no weight gain from 11-14. After several endocrinologist appointment to rule out other issues we had an MRE which discovered inflammation in the small intestine which had most likely been simmering the entire time regardless of his "normal bloodwork" He started remicade and puberty and growth hit hard that appetite I wish he had, well I got my wish. While I can't change the path we took I wish I had been more open to remicade in the beginning.
 
My son was dx at 12. He's 13 now although I suspect he had the disease before 12yo. His biggest issue was lack of growth. We tried pentasa, no luck. Moved to remicade, had 4 infusions, no real changes. Also no other symptoms. However, two weeks before next infusion, he had fever every day, sore throat, ulcers in his mouth, rash, and no appetite. Got infusion at a higher dosage and that afternoon, all those symptoms were gone and for the first time since being diagnosed, he has a normal appetite, so I'm hopeful the growth will now come. I think he just needed that extra dosage....the drug seems scary and I dont like it either, but I think he needs it. Although he doesn't usually have many outward symptoms, he still wasn't gaining or growing, so I knew the disease was doing something inside. Good luck to you....
 
@Grady'sMom - Sorry I missed your thread. It's both crazy and sad that so many are in the exact same situation, with the exact same thoughts running through our heads :) I do find on the upside it is also good to have so many to people to relate and talk to. I will just give you my story in case it helps because it is similar to yours.

My son was dx'd @ 17. He had constant diarrhea and weight loss, labs were poor, but he didn't "seem" to be in pain. CT scan diagnosed it, colonoscopy showed massive inflammation of the terminal ileum.

His first course of treatment was Entocort (because like you, I just mentally could not get past the immunomodulator/biologic thing - I just literally told the GI I refused to discuss it). He backed off as you can tell from these boards, ours is not an unusual reaction.

A few months later, my son ended up with a perianal fistula (1 month before HS graduation - imagine his delight). He had surgery with a seton, and the GI told me that if I wasn't agreeable to remicade, we needed to try Imuran or he would continue to get more (and worse) fistulas. He knew I was scared to death, but he gave me the straight talk and said that we were in a situation where something bad was happening, and that we had to treat the bad thing that was happening vs. make a decision based only on the bad thing that might happen. I remember like it was yesterday sitting in the dark in the pharmacy parking lot talking to him about the options.... And whether or not I was actually going to go pick up the prescription...

For some reason, having my son take a pill felt "less bad" than the remicade, but that in hindsight, that was not exactly logical. I remember feeling completely ill and bawling my eyes out after I handed my son those pills for the first time.... But I knew that it was the only hope to help that fistula. So I reluctantly did it.

The Imuran healed that fistula in days - when the surgeon removed the seton, she said it looked beautiful and perfect, and that was a relief and I felt for a second that I might have done the right thing.

My son took Imuran for 3 years, and we managed to keep the Crohns relatively at bay. Unfortunately, it stopped working (slowly) over the past year. I tried a bunch of other stuff (diet, supplements, etc.) and nothing helped.

The GI said the "R" word again. I still couldn't do it. We submitted for the SSI trials in Vancouver but at that point, I knew he didn't have the time to wait. We went for a second opinion w/ a leading GI at Rush University in Chicago. Son had a colonoscopy and it showed that his ileum was a mess and now he had colon ulcerations with ominous signs that more fistulas may be forming. His labs were like the labs of a homeless person. The GI finally said - dude.... Remicade or 100% chance of a very messy surgery.

So last week my son had his first Remicade infusion. He responded well and for this week at least, is eating better, feeling better, etc. Only time will tell, but signs are positive. Ironically, he is still on Imuran to give the Remicade its best chance of working, so it is the double whammy treatment.

My experience - these decisions are by far the hardest you'll ever have to make. There is no right answer, and there is no way to know if you are doing the right thing. Trying Imuran first felt better to me, but that comes with it's own risks and side effects. Remicade scared the living crap out of me, but at some point, you end up between a rock and a hard place, and you have to go for the thing that will solve the problem at hand.

Everyone makes their own choices, based on their own situation at the time, and that is simply the best you can do. You will second guess yourself all the time, but you just have to review the options, and make the decision and pray to the universe that it was the right one. It does get better as you learn more, and get acclimated to the disease, the options and the process.

I guess I don't have any solid recommendations except to say that the worst decisions I made were the times when I decided to do nothing. At least in our case, this is not a disease that is very kind when you let it go on without intervention.

You are getting alot of good info from the veterans here. I am hoping and praying for you, and send you tons of virtual support as you go through this process. HUGS to you and your son and family.
 
Sorry I'm joining this thread late too, but we have been in a similar situation lately. My 10 yo son was dx'd at age 8. Initial treatment was prednisone and imuran. He reacted to the imuran, so it was stopped and replaced by methotrexate injections. The methotrexate has worked well, for almost 2 years. This past March I noticed some symptoms returning, bloodwork, fecal calprotectin, and a MRE confirmed the Methotrexate was no longer working. So, we are now looking at Remicade too. It scares me, but so do the other meds, as well as Crohns itself! The reality is, it just cannot be left un, or under, treated. It's an aggressive disease needing aggressive treament.

Good luck as you process all the information and come to a decision. I hope your boy gets on the road to feeling better. Hang in there!
 

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