Re: Anybody here have kids being treated for Crohn's or colitis? Any success tre

[Guest guest]

, your son may need regular rounds of flagyl. I think some adults

with crohn's need flagyl to do well. With my daughter we are planning

to start a week of flagyl each month. My daughter is doing well on

pentasa, and I'm curious to see what additional improvement we'll see

once we add the flagyl. She was on LDN for a couple of years before we

went with the GI meds, so I don't know what impact it would have when

used along with pentasa/flagyl. The LDN didn't get rid of her bowel

disease.

>

> If so would you mind sharing what has worked for you? What things

you tried

> that didn't work? Anything else you think might be helpful?

> Does anyone know of a Crohn's/Colitis specific internet support

group for

> kids?

>

> My boys are 5 & 7, technically don't have Crohn's yet so the

diagnosis is

> 'unspecified colitis' but my youngest has Prometheus labs titers for

Crohn's

> and the doc is taking a route of assuming it will probably turn into

Crohn's

> if we aren't proactive. They've been on Pentasa since May with great

> results with poop issues mostly regulated, bloated tummy mostly

gone, pain

> mostly gone but we're still not 100% where we need to be, 1 child is

still

> complaining of tummy aches regularly and the other still has poop

accidents

> every several weeks (it used to be daily so we are a heck of a lot

> better!)...

> Anyhow, I need to network with other families in the same boat. My DAN!

> thinks the high Chlostridia levels may be a component in what's

leftover so

> to speak so he was open to doing a round of Flagyl but I haven't

heard from

> him how he feels about a longer term run on that. The GI doc wants

us to do

> low level antibiotics in rotation or try a round of Prednisone to see if

> symptoms abate. We did 1 month of low level Flagyl (125mg 2x/day)

with my

> older son and it was his best month ever! He had no poop accidents the

> whole month until we stopped the Flagyl then we had 1 accident after

> 1.5weeks back off the Flagyl.

>

> We've re-started chelation with oral DMSA, is there a chance that

> is interfering with things on the tummy issues?

>

>

> Thanks,

> near LAX

>

>

>