Anybody here have kids being treated for Crohn's or colitis? Any success treating Chlostridia?

[Guest guest]

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