To remicade or not to remicade...that is the question!

[LJS]

Hey there,

It's been several months since I posted. To review, my DS is 9, soon to be 10. He was diagnosed with Crohns at 6. His disease is in a tricky place to treat, it's in the very center of his small intestine, visible only through the pill camera. He's "lucky" in that his overt symptoms are stomach pains and throwing up. However, his biggest issue is the chronic inflammation and not growing.

He's been on azathioprine and allopurinol for a few years. We've tried all the "regulars" but nothing works to get him into remission. We did EN (SEN) for 6 weeks, and he gained like a champ, 5 lbs which is more than he gained in the last few years combined. However, with overnight camp this summer, then home and back on the EN, then off due to a bad cold and thanksgiving and... well, I cannot get him to do it again. We've tried and tried and I think psychologically he just cannot get himself to insert the tube. And forget drinking the peptamen jr, it's not an option with him.

So, we are going back to our ped GI in a few weeks, but this time he will insist on moving to biologics, as DS just isn't growing (we'll do bloodwork, etc right before our appointment with him).

I've been putting of biologics for a while now, as I'm concerned that pulling out the "big guns" when he's basically asymptomatic concerns me.. don't jump - I realize that his chronic inflammation and lack of growth are MAJOR symptoms!

So, would you do remicade? I'm not sure we have any choice anymore..

Your thoughts??
Lin

 

[dodie74]

My son hasn't put weight on for a while now either and after having scopes and mri done before Christmas its been seen that he has 20cm of active crohns in his small bowel so we had the decision of surgery or methotrexate. After talking with his ibd nurse We start methotrexate end of the month and its scaring the living daylights out of me but I just pray it gets the inflammation under control and he starts to thrive. Its such a hard decision for us parents but we just need to do the best for our kids to keep them well. Best of luck with what you decide. xxxx

 

[Jmrogers4]

Sorry Lin,
We seem to be on a similar journey. Jack was diagnosed nearly 4 years ago and never put on weight until we did the EN about a year ago and he actually got to a normal weight for his size and he even grew a tiny amount but we have struggled with growth and weight gain the entire time. He had his first remicade infusion yesterday and I have said the same things you are saying for the past 3 years. I think for us the tipping point is his age, he is 14 1/2 and while all his peers are growing leaps and bounds he is stalled and while puberty has started full blown in his brother for the last year or so (he is 12), Jack is barely showing signs.
It's doubly hard to pull the trigger when they don't have a lot of symptoms and generally feel pretty well.

 

[LJS]

Jacqui,

Exactly! And not only do I find it hard to pull the trigger, my son constantly asks why he has to do something that will make him feel bad when he feels so good right now.. tough questions to answer.. but I'm pretty sure we will go down the remicade path. Especially since DS is losing weight now.. he's lost 3-4 of the 5 lbs he put on.. aahh!

 

[Jmrogers4]

^^^ Could be looking in the mirror. Exactly although he's only had one infusion and he felt pretty good after he was tired in the evening and this morning and had a headache last night which tylenol helped.
Jack was 97lbs in July, he weighed 91 yesterday at which point his GI said even more proof we are making the right decision.
How is his appetite otherwise?

 

[LJS]

He's overall not the best eater..He's about 48 1/4" and about 52 lbs.. and <5% on both growth charts.

We're scheduled for blood work and whatever else he needs to do prior to moving to biologics, end of the month.

 

[Jmrogers4]

Jack's GI says lack of appetite is very common in small bowel disease, so inflammation causing absorption issues plus lack of nutrition from not eating = lack of growth.
We did just see an endocrinologist to check for any other issues that may be causing lack of growth just in case but have not gotten all tests back yet

 

[LJS]

I'm hoping to avoid any growth hormones at this time. I am so worried what meds we will have open to us by goign to a biologic now, in the event he has a major flare down the road but I guess I just have to handle this on-going inflammation and lack of growth now and worry about that when/if it happens.

Good luck on the test results!

 

[my little penguin]

Biologics may be the big guns but more and more docs are using them first since they work well and disease course can be changed by them .
As far as growth -
You move from mild to moderate categories just due to lack of growth.
Think of it this way
Kids are growing machines
The body uses calories by
Order of importance
Primary functions like breathing heart get calories first
Brain muscles other organs second
Growth weight last

So if your not growing or gaining the body is undernourished
This is warning sign and can lead to developmental issues next .

So for some they don't see growth as a real issue
But the reality is the kid is undernourished either because they physically can't consume enough calories ( inflammation ) or their body won't absorb the calories they do consume.

The difference in risk between the two types of drugs is minimal
Biologics were the only thing that got my kid back and let him grow / gain normally.

Good luck

 

[LJS]

thanks MLP. I know that all intellectually. My heart just struggles with the decision, which I know I've already made (to move forward)...

 

[araceli]

My daughter was feeling good, no loose stools, no blood, no problems with weight (actually she was on the chubby side) or growth, but inside the disease was making progress and developed a fissure, that was the main reason she was put in biologics. In her case, she does not have any issues with it, does not feel bad or has any pain during or after infusion. I hope everything goes well.

 

[crohnsinct]

Hi LJS - I can totally understand the lack of outward symptoms and the hesitation for treatment but lack of growth is a symptom and a pretty major one.

I also get the putting off the big guns...if I had any choice at dx I would do the exact same. But two years later and a lot of research under my belt I have come to realize that they are only the big guns not because they are more dangerous or make the kids feel horrible (my daughter does completely fine with Remi and Mtx) but because they beat the crap out of the disease! There is research to show that the sooner you get that inflammation under control the less likely the kids are to need surgery down the road and him having small bowel disease already puts him at a higher risk of surgery.

I know when you are at the top of the ladder it is hard to think about what if this doesn't work or they lose response...well I am of the thought that if you get them to a good solid remission and they start losing response or building antibodies you just might be able to go back down the ladder kwim. Maybe the others drugs didn't work when things were super bad but given a kid in good solid remission maybe they will work then. Nothing is set in stone. These docs have a lot of tricks up their sleeves and there is a lot of research and new drugs down the pike.

Man I hated that I wasn't given a choice but seeing what you all have to go through I am a little glad I wasn't. Good Luck with the decision!

 

[Sascot]

Sorry to hear you're having to jump to biologics. At least it's getting the chance to get rid of inflammation before puberty hits so he can hopefully grow and develop on "schedule". Good luck

 

[LJS]

thanks everyone. We go to the ped GI in 2 weeks..will update when I have more info

 

[Tesscorm]

Stephen was also showing no symptoms and, in our case, we were moving from maintenance EN (no meds) straight to remicade with no apparent symptoms simply because we moved from a ped to adult GI! Was definitely a tough decision but, while there were no outward symptoms, MRIs continued to show inflammation. GI said the continued inflammation could/would lead to surgery and what was the point of 'saving' the biologics for a time when they wouldn't work anymore to prevent the issue, ie when surgery was needed to remove scar tissue. As far as why remicade and not imuran or mtx, his answer was why not use what we know works best??? There was a bit more to our conversation but this was the gist of it.

It's never easy to make the decision but, as time goes on, it does get easier to accept. :ghug:

 

[mish2575]

Remicade worked great for my fistulas - I dont have a similar experience to compare to your son though. I had no adverse reactions (except for 24 hours of depression after the very first dose--weird). But I cannot imagine making this decision for my child. God bless you and good luck.

 

[Mehita]

In retrospect (ha!), if we would have started Remicade earlier, when he was asymptomatic, we probably could have skipped out on the small bowel resection, abscess, fistula, chronic inflammation, and three hospital stays that my son had the joy of experiencing this last year. I totally regret not getting his disease under control with Remicade the first time it was offered to us. I was scared and he was the one who paid the price.

So, if it helps any, you could think of Remicade as somewhat being a preventative medication.

My son has only done the loading doses, but his appetite is through the roof. He gave me a pile of blue jeans today that are suddenly too short and we need to go shoe shopping tomorrow. His feet are officially bigger than mine. All in ten weeks time. It's kind of crazy. Happy crazy though!

 

[Jmrogers4]

Oh Mehita,
That makes me so happy!!! I can't wait to go shopping. We currently have the same size feet and he has a really cute pair of topsiders (well he wouldn't call them cute, maybe whatever the current word for cool) I want I keep hoping they will be too small so I can have them

 

[Farmwife]

The "big guns" only look big until you have to use them.
After they work, then they seem smaller.

:study: Oh that has to go in the book of wisdom somewhere.

 

[Brian'sMom]

I think you use the gun you need when you need it! Why 'wait til later' if its the thing needed? When a kid's growth is in jeopardy or delayed puberty or malnourishment, etc... well that sounds like a real good time to bring out the "Big Guns". And the biologics (Remicade) have been around for quite a long time now... are they really still the big guns or just another option. Maybe I'm numb because we're on Biologic #3... and our GI said she thinks they are not really helping my son. The EEN is though!
This is just my opinion and I'm just a Mom... but I think the best time to get your kid on a really good maintenance med is when they aren't at their worst. It has the best chance to work if it doesn't have a huge uphill battle. Humira seemed to be our ticket for a year and half... but looking back now, ds was pain free, but wasn't growing as he should have. So maybe the tnf blockers aren't for everyone. So for us... what would 'waiting' or 'saving' it for later have accomplished? I guess that's my point.
Good luck in your decision.

 

[LJS]

Thanks everyone...I know we are going to start remicade. I guess I just needed to hear that I was doing the right thing for my son, so thank you all! So true, better to get it under control while it's not bad....that is what I was doing with the EN. I have to learn to let go and move on..EN did it's work but my son is still just a little boy. I have to make sure he always knows how proud of him I am and that I'm not angry or disappointed.

Thank you all so much and I hope and pray for the best for all of our sweet babies!

Lin

 

[DustyKat]

Thinking of you LJS. :ghug:

I can’t really add to the fab advice and validation you have already been given.

Although we have not done the biologics here, surgery was our only option, I would gladly have grabbed them with both hands given the choice. As has been said, it is the biologics that study after study have proven to be the most effective in treating disease and maintaining remission.

It surely is difficult to convince a child and as a parent to justify using the type of medications we do on a child that for all intents and purposes feels and looks “normal”. But deep down we know that this is very much an invisible disease whose reach can be insidious and deceiving. The issues of weight and growth as you have said are major symptoms and they will become all the more apparent as puberty approaches.

There are no wrong decisions mum just different ones and the need to change when it is obvious that something is not working or no longer working.

Sending loads of luck and well wishes that Remicade is your wonder drug!

:hang: Mum, you are doing fab.

Dusty. xxx

 

[Pink]

Hi LJS,
I totally can relate to what you are going through. My son age 18 recently dx has inflammation in the small intestine primarily in the duodenum, and usually has no symptoms.However, if he does not get rid of his inflammation the surgery in the area can be complicated. We have waited this out, but he has worsened. He has opted for remicade and will be starting soon hopefully. It is scary and so many factors to consider. It is almost that you have to take a leap of faith and hope for the best. By staying informed of the pros and cons, and listening to other people's journeys can help us make an informed decision. Good luck with whatever route you choose!! I am sure I will reach out to this forum the night before my sons first infusion....

 

[LJS]

Pink, good luck to your son and let us know how his first infusion goes..thinking good thoughts for you and your son.

Funny, its' so easy to just put our heads down and pretend that everything is fine when your child has no overt symptoms, and to think "hey, we got this"...but then you look at your child and see that he/she isn't growing and you know in your heart that while you think you are doing all you can for him/her, if in reality you don't act to get that inflammation under control, down the road you (and your child) will pay a huge price..and that is why, when my son looks and feels great, I will have him start remicade. While he doesn't really understand, b/c he DOES feel great, it's my job as his mom to make sure that he continues to feel great, that he can grow and thrive and kick this disease's ass..so that he can feel great for as long as possible, so that he can live his life..and be a normal kid, then a normal teen, then a normal young man... and so on.. So while the decision is so hard and heartbreaking on one hand, it's really the ONLY decision I can make to ensure a happy and healthy future for my child...

 

[Jenn]

Absolutely, do Remicade. I was hesitant to start too, everyone is, it's crazy scary, but it can be quite a miracle. Best of luck!

 

[momoftwinboys]

Remicade worked for my son. The morning after his first infusion he said he had not felt that good in a long time. Hope he finds success in whatever road you take. Good luck