New to this

[gypsymom]

My 8 yr old son was recently diagnosed with Crohns.... it was so severe by the time we were given a definite diagnosis he went straight to remicade.
This last time his Dr. waited 8 weeks to give him his infusion & it seems like it is just not working. Prior to the latest infusion (the rest have been at 6 or 61/2 weeks) he was complaining of more pains, etc but I figured once he had the meds it would improve... it is not. It has been a week should I call his Dr or giv it a few more days?
I am grateful for this forum as this has all been slightly overwhelming.

 

[Ands]

Sorry that you have had to find your way here. I'm afraid I've no experience with Remicade but I'm sure others will be along soon who have. My DS was diagnosed at age 10 and we are still learning every day (he's now 13!).

Big hugs.

Ands x

 

[crohnsinct]

How many doses has he had so far? Was this the last of the loading doses? Did the pain not improve with this last infusion? Had it improved with the other infusions?

Is he also on a steroid? If so, is he tapering? Sometimes you just have to slow the steroid taper down until the Remicade can do all the heavy lifting.

My daughter was also put right to Remicade. Same thing. So severe and inpatient we had no choice. She was also put on prednisone. Every time we tapered the prednisone, symptoms popped back up. We had to slow the taper waaaaay down. It took us a few months to see improvement and even then Remicade needed a little help with EEN added. After about 6 months, it was smooth sailing.

If with the other infusions, the pain went away and with this one it isn't, I would call and just FYI them and let them decide if it is something they need to worry about.

After a week, I wouldn't think it is a Remi level problem but they may want to check his antibodies.

 

[Mehita]

Why did he switch to 8 weeks? It sounds like six was working... right?

 

[CrohnsKidMom]

Welcome to the forum, but so sorry you had to find us! My son was dx'd last yr, also at age 8. We don't have any experience with Remicade, but there are many on here that do. I hope this issue gets resolved and your son gets on the road to feeling well soon.

 

[my little penguin]

Mine never could get to 8 weeks while on remicade
6 weeks was his limit otherwise he would have symptoms

 

[Maya142]

My daughter also never got to 8 weeks. We did 5 or 6 for a while and now do 4 to 4.5 weeks.

 

[gypsymom]

Thanks guys for all the info and support! As you are well aware this can be a rough road to tread down.

This was his 5th infusion and the Dr. just wanted to see how long he could go without having symptoms and has now decided to go with 6 weeks 7 at the latest.

What is EEN?

He is on ranitidine and omeprazole for 2 weeks but aside from that and a daily vitamin he is not on any other meds.

I planned on calling the doctor this morning to talk to them because he is still complaining about his stomach hurting a lot and then last night in the middle of the night he started throwing up and spiked a fever. I spoke to his school today and apparently the flu is passing through and they had a ton of kids out... so now I am wondering if the the symptoms from the infusion delay and the flu or combining or what.

It is frustrating that this disease is so different in each person because we have to figure out what is normal for him and that is proving to be a challenge.

On top of that I was just diagnosed, spent a week in the hospital and will have to start remicade soon so I am stressed over him and feel junky as well.
What can you do right?



Son diagnosed in May 2014 (Age 7)
Currently on Remicade Infusions
Previous meds include Flagyl, short dose of prednizone, and omeprazole

 

[Clash]

EEN is exclusive enteral nutrition, it is formula only for a specified amount of time. It has show to be as effective as pred but without all the nasty pred side effects.

Sometimes it is done orally using otc formulas like boost or ensure or some of the more palatable semi-elemental formulas by px. Some kids take that formulas by a naso gastric tube. Usually with these a px'ed formula that is either semi elemental or elemental is used.

My son did supplemental EN and used a tube. So every night he would insert the tube and take in the formula by pump while he slept. In the morning he would pull the tube out.

There are a number of kids that have done either EEN or supplemental EN. I'm sure some other Moms will be by to share their experience.

I hope he gets to feeling better soon.

 

[my little penguin]

Ds was dx at age 7
Instead of pred we payed him to drink peptamen jr fir 9 weeks.(7-8 shakes a day)
No food over thanksgiving and Christmas .
He was also on maintence meds at the time (6-mp)
He was switched to remicade at age 8.
He still drinks peptamen jr 2-3 a day . He has gained 35 lbs and grown 9 " inches in three years so he will drink them until he is done growing
Plus it's nice when they get sick he just drinks shakes to keep up his nutrition when he wont eat . Ds drank it all orally -it was tough the first two days -lots of tears but he got through
Now he drinks them easily .
Hugs

Any fever and we are to call the on call gi due biologics or immunosuppresants
I would give your gi a cal just Incase

 

[crohnsinct]

Oh no! Poor pumpkin! Your theory seems plausible but for sure give the doc a call.

It can take maintenance meds a but to work so docs will usually start you on a steroid or EEN to get you feeling better until the maintenance med has a chance to take over.

Sounds awful to wish this on a kid but I really hope he has he flu and can get on with the business of healing soon.

FWIW - my daughter as not been able to go longer than 6 weeks with her infusions.

You are dx'd? With Crohns? I am so sorry to hear this.

 

[Mehita]

You were dx'd with Crohn's, gypsymom?

 

[Jenn]

8 weeks is the usual schedule after loading doses. I'd ask to have him tested for antibodies to the Remicade. My son's stomach started hurting when he built antibodies and we had to switch to Humira.

 

[gypsymom]

Thanks Jenn for the info on the antibodies ... will ask his Dr. about that.

Mehita yes I was just diagnosed with Crohns ....

We have a long road ahead of us but we will be alright....