Jump to Biologics?? and Pancreatitis

[Jfarrelly]

DS is 4 YOA was recently hospitalized for 6 days with Crohn's flare, has been on Methotrexate for 2 months and his Lipase levels are continuing to rise currently at 600. But shows no signs of pancreatitis. He has a workup next week consisting of a sweat test to rule out Cystic Fibrosis, and an ultrasound, among other genetic tests to rule of family rx of pancreatitis. He has been placed on a strict low fat diet. After missing 2 days of his injection due to Holiday chaos, the doctor worries the methotrexate isn't holding, and is strongly considering bumping to Remicade right as I start my nursing clinicals. I am perplexed, and I don't know what to think, my son was hospitalized with pancreatitis with levels over 1000, but his Physician still feels the methotrexate isn't helping his lipase levels although we have seen more normal stools with hardly any blood for the first time since Dx. We haven't been in remission yet since Dx. His SED CRP are still slightly elevated at 2.9. and 44 although I do not notice much flaring other than high urgency at times. I am blown away, I am scared something is wrong with his pancreas but I find it odd he isn't showing symptoms. Also I should note, he is 4 yoa and NEVER complains of pain and he hides it. I just want to get the tests done already. This whole time I thought we were heading towards remission and his pancreas is acting up. I never thought we would potentially be on Remicade already. Has anyone had lipase issues? I have so much anxiety right now and I am fearful all of these changes are going to occur while I am in clinical and I won't be able to be there.

 

[my little penguin]

Mtx typically takes 8 weeks to work so if you were going to see an improvement in sed rate and crp they would have probably shown up add in pancreatitis and high lipase levels I can see the idea to change meds .

DS was on Remucade for 8 months.
It was a miracle med for him. You forget how sick the kiddos are since you see them everyday until you see them well again.
The Ibd meds are scary but so is Tylenol when you read all the possible side effects.

I like to think of it interms of risks
Risk of dying by
Car 1 in 250 for those under 14
Drowning 1 in 1000
T cell lymphoma without Ibd 2 in 10000
With Ibd meds ( such as remicade ) 4 in 10000.


So yes a risk but the risk is much lower than the ones we take everyday to improve the quality of life of our kids.

I hope remicade gives you calm and peace that it did for my child.
Add in after the loading dose only an infusion every 6- 8 weeks not bad at all.
Plus the nurses cater to the lo during the infusion so they love it - mine did at age 8.

Hugs
Never easy but untreated or under treated crohn's can be worse and that is a given .

 

[crohnsinct]

Yes, used to be docs went step up so it is surprising to most the jump to biologics BUT ped GI's have been finding that the sooner biologics are used the more success in terms of mucosal healing and avoiding surgery down t he road. They have a good track record with few side effects and not much of a different risk profile than many of the others.

It is so hard when what you are seeing in front of you doesn't match disease activity isn't it?

FWIW my daughter has been on Remicade for almost two years now and she achieved remission 6 months in and has stayed there ever since. Starting is the hard part but once you see them feeling so well and those glowing lab results come in you won't look back.

Dosing is easy...every 4 to 8 weeks
Labs are pulled prior to infusion so lots of feedback as to what is going on (assuming labs are a good indicator for your child)
It isn't forever - other drugs are in the pipeline and hopefully even a cure

Hugs! It is so hard...especially for such a little one eh? Hope things turn around for him soon! Good luck on your clinicals!

 

[izzi'smom]

I am no help regarding lipase-just wanted to chime in that I know the feeling all too well of putting your child on medication with significant risks...mlp ty for describing it that way!! Wishing you ease in your decision and that the upcoming tests are smooth sailing!

 

[Mehita]

No advice on the lipase, but I will put in another good word for Remicade. We didn't treat our son's Crohn's soon enough or strongly enough and now he has 10" fewer intestine and a lot of catching up to do. He's just finished his three loading doses of Remicade and is doing great. I regret not starting it sooner. Another thing I love about Remi... no daily meds to worry about or compliance. That might be a good thing with the busy like you're about to start.

Good luck! I hope he feels better soon...

 

[kimmidwife]

I also wanted to just wish you luck in your decision it is a hard one to make but others on here have had very good success with it! Good luck with whatever you decide hopefully it will help a bunch!

 

[Jfarrelly]

Thank you all for the wonderful support! I read these threads often, and they help my spirits to know there are other mothers out there going through the same thing. I can tell you I come from a family of medicine, and my father who's been in practice over 30 years has never had a Crohn's patient, nor or there any other children in my area with the same dx, so your support means more than words! Thanks ladies!! Best of luck and a happy healthy new year to you all

 

[Johnnysmom]

My son had very high lipase levels as well when he was diagnosed. His amylaze levels were always fine. Our GI said it was not truly pancreatitis but due to the area of inflammation of his crohn's.

This is an interesting article on high lipase with crohn's.

www.ncbi.nlm.nih.gov/pubmed/?term=11803494