13 year old diagnosed with 'indeterminate' colitis

[RonniB]

My 13 year old son was diagnosed 3 months ago with indeterminate colitis.
Luckily we are able to get him in to a ped GI within weeks of first noticing diarrhea and GI bleeding. I was surprised to learn that they weren't able to determine exactly what he has, but apparently treatment was going to be the same anyway.

He's had 3 doses of remicade so far and is also on methotrexate, folic acid and prednisone. He was doing pretty well, then all of sudden just before his 3rd dose of remicade, he started having diarrhea again. Of course I was worried that perhaps he wasn't responding well, but it turns out it was c. diff. Yet another education that people with IBD are susceptible to it. Started him on Flagyl. He couldn't get the pills down. Luckily, we found a compounding pharmacy and got a suspension.

Well, he finished Flagyl last week, and i thought we were finally going to be able to wean him off prednisone. His last does was on Monday. Two days later, boom, the trips to the bathroom increased. Ped GI re-started prednisone. It seems to have helped after just two doses. His next infusion is at the end of August. I'd really like to know whether anyone has had success getting their child weaned off steroids. Assuming he continues to improve we will not need to check if the c. diff didn't completely clear.

I know we've just started down this long road....learning a lot and at times feeling overwhelmed. Still making my way through all the threads to learn as much as I can.

 

[my little penguin]

An alternative to steroids is een
Exclusive enteral nutrition-formula only no solid food
Most kids use semi elemental-peptamen jr
Others can handle kids boost or pediasure

Een is as effective as steriods with none of the side effects
Some GI in the US are hesitant to suggest it it

It does induce mucosal healing
Helps with growth and weight

Some kids use ng tubes placed at night removed in the morning (so no tube at school)
Other kids like mine drank it orally for 6-9 weeks

No tube

It's not easy
Kids hate it at first
But we treated it like meds
No choice but has to go in
So they choose that
Mouth or tube


Pill swallowing ccfa has a sheet
Ds had to learn to swallow them at age 7 when he was dx
http://www.crohnscolitisfoundation.org/resources/pill-swallowing-techniques.html


http://www.crohnscolitisfoundation....s/ibd-nurses/best-practices/take-medicine.pdf


It will get easier
Ds is the same age but has been dealing with this for close to 7 years now

 

[my little penguin]

Crohn’s disease (CD), a form of inflammatory bowel disease (IBD), is thought to arise from a complex interaction of genetics, the gut microbiome, and environmental factors, such as diet. There is clear evidence that dietary intervention is successful in the treatment of CD—exclusive enteral nutrition (EEN) is able to induce remission in up to 80% of CD patients. While the mechanism of action of EEN is not clear, EEN is known to cause profound changes in the gut microbiome. Understanding how EEN modifies the gut microbiome to induce remission could provide insight into CD etiopathogenesis and aid the development of microbiome-targeted interventions to guide ongoing dietary therapy to sustain remission. This review includes current literature on changes in composition and function of the gut microbiome associated with EEN treatment in CD patients.

From

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452177/

 

[Maya142]

Hi and welcome!

It might take some time with Remicade. I know he has had 3 doses, but sometimes kids take longer - some kids take 6 months. They also may need to play with the dose or the frequency. Remicade can be given up to every 4 weeks at 10 mg/kg. The normal starting dose is 5 mg/kg, and if he's on that, then you do have room to go up.

If he's had 3 doses, that means the next dose will be his first maintenance dose. Often docs start with them at every 8 weeks and they are made more frequent if necessary. My daughter never made it to 8 weeks - we went straight to 4 weeks to get her IBD under control quickly. We were later able to move her infusions out to every 5 weeks when things were more stable.

The goal would be to get the inflammation under control so you can wean him off steroids -- the good part about Remicade is that you have flexibility to do that. They could either up his dose or give him the next infusion sooner than 8 weeks and that might help him get off steroids more quickly.

Obviously, you want to minimize his time on steroids because of all the nasty side effects they have.

CDiff does tend to cause flares, so that might also have caused the flare.

As MLP said, the alternative to steroids is Exclusive Enteral Nutrition - 100% formula for 6-8 weeks. Some hospitals will allow kids to do 80-90% formula instead, which does work well for most kids (just so they can have some food, which is easier on them). It can be done by drinking the formula or using an NG tube. My daughter never did EEN but did do supplemental EN to gain weight since she was severely underweight and malnourished. It worked very well for her. She used a feeding tube since she was unable to drink enough formula.

There is lots of great info on the forum - good luck!

 

[Mehita]

What is his Remi dose? I'm guessing 5mg/kg? The nice thing about Remi is that it's pretty flexible and you can increase and decrease as needed. Some kids burn through Remi and need to be bumped up (my son is 7.5mg/kg every 6 weeks). There is a text that can check Remi levels and antibodies. It might be a little early yet, but something to ask your GI about.

 

[RonniB]

Thank you for all your help. After speaking with his ped GI, he will have another remicade infusion on Friday. His current dose is 5mg/kg. They will also test his levels, etc. It certainly seems to me that an adjustment to the dose and/or frequency of the infusions is needed until the right combination is found.

 

[ashly825]

Just an added note on the C. Diff, it took my daughter nearly 8 months and a change to Vancomycin to get rid of hers. Your son may very well still have it.

 

[RonniB]

He actually does still have it....and we just started him on vancomycin on Thursday afternoon.

 

[Maya142]

My kiddo did better on Vancomycin than with Flagyl. It's actually recommended now to use Vancomycin as the first line treatment for CDiff for people with IBD.

She has had CDiff twice.

It took about a week before she felt better, so hang in there!!

 

[RonniB]

I understand why they wanted to start with the Flagyl. I'm pretty certain from what I've been reading that the vancomycin will clear it this time. Crossing fingers anyway.

It does help to hear others experiences.

 

[ashly825]

The Flagyl about killed my daughter and that's when they started her with liquid Vanc. She was on it several months before it finally cleared up.

 

[Maya142]

My kiddo was absolutely miserable on Flagyl too. Vancomycin was much easier to tolerate for her. We only needed a 2 week course, both times (I think).

I hope it works well for your son!! Fingers and toes crossed that this will do it.