Trying to make a decision about Remicade

[Brett's mom]

Hello,
Trying to make the decision about whether to put my son on Remicade. He's a happy and " healthy" little guy that has Crohn's. he has more energy than anyone I know. Which makes it hard for me to come to terms with his diagnosis. His inflammation markers are high and he isn't growing. He's been symptom free since his initial diagnosis. His last colonoscopy showed active disease in his colon. He's currently taking Azathioprine and pedia sure supplements. After reading the short and long term risks, I am so fearful of subjecting him to this treatment. He starts kindergarten next week.

 

[Clash]

These are always such hard decisions. My son went straight to remicade when diagnosed but he was a lot older, 15. If your son still has inflammation then it sounds as if the AZA isn't fully controlling his CD and he has active disease.

There are a few parents on her whose children's only symptoms seem to be lack of growth. At the moment, my mind is going blank or I would tag a few of those parents to come by and comment. I'm sure others will be by shortly to give their experience with Remicade.

We have quite a few kids around your child's age, farmerswifey, MLP has a son a few years older, farmwife has a daughter a bit younger I think. Hopefully, you will get some responses soon.

 

[Zackattack]

HI there Brett's Mum,

I know exactly what you're going through. I had to make a similar decision myself. There is risks involved with any drug, but the benefits may easily outweigh the bad things. Having said that be aware that taking TWO forms of imunosupressant together can increase the risks. Such as azathioprine and Remicade together. One other consideration is to make sure he has no abscesses as sometimes these drugs can make it more difficult for the body to fight them.

Have you tried other options? Such as a liquid diet based on drinks such as Ensure's. This may be easier for him as he is a young lad and may like the taste. This may be worth trying under the supervision of a clinical dietician (not nutritionist) and your doctor.

Let me know if I can help with anything.

Much love,
Zack.

 

[Farmwife]

Hi and welcome from up here in Michigan.
My girl is four and will be starting K4 soon. It's so hard to believe she's getting old enough to do school.

Just to let you know that no growth is a symptom of his disease.
So he's not syptom free.

I know my Grace was shorter but since starting EEN (Enteral Nutrition) she started to grow.:dance:
Has his GI suggested EEN? I highly recommend it. It's been a life saver for us.

I hope all goes well. Please PM if you have any questions.


HUGS

 

[farmerswifey]

I haven't checked in for a while but I wanted to comment on this post...my son was diagnosed with Crohns last year aged 9. I remember saying to the doctor "but he hasn't any symptoms - meaning classic Crohns symptoms, he didn't have tummy pain or alot of bowel issues, all the time. His symptoms were lack of growth, very low iron, not able to absorb any iron or nutrients, a little blood when going to the toilet, lethargy, sore joints and a very high faecal calprotectin level.

The dr gently said to me "he has symptoms, yes". Those were applicable to him, so I suppose everyone is different. I know how you feel about the medication, I didn't want to give my son the drugs either, thinking that he wasn't really in need of them...it's such a hard decision...I hope all is going ok for you now x