Please help me-child with recurrent c diff

[ilovemyson]

My 12 year old son developed c diff after taking Omnicef for sinusitis Oct of 2007. Initially treated with Flagyl, after 1 week off, he became worse with fever, severe abdominal pain, and diarrhea. He was put on Vanco this time and developed hives after 4 days so was taken off. We later found out it was the flavoring he was allergic to and not the drug. He was followed up by a Pediatric GI doc and put on Florastor. He did well from Nov 5 2007 till April 25, 2008. No diarrhea, just an occasional belly cramp. April 23 he developed Influenza B and without any antibiotics, he developed the diarrhea again and it tested pos for toxins. Since then, when he finishes a course of vanco, be it a tapering or an extended length of time he is on it, he relapses within 5 days to 2 weeks. He is otherwise a very healthy boy who plays sports and does very well in school despite missing so much school last year in 6th grade. This is destroying us as a family. We are all very worried, scared, angry, and frustrated. He has been on Florastor and high doses of Florajen 3. I have spoken directly with Dr. Lamont, Dr. McCann, and Kelly Karpa. He had immunologic testing done which came back normal. He had blood work done back in April to rule out inflammatory bowel issues which all came back normal. He will be seeing a new GI doc at CHOP this month. I'm sure he will want to do a colonoscopy. I pray that is normal. Any other suggestions out there from mothers going through this with their children? Jill in PA

[Nancy1]

Jill,
Welcome to the group that no one wants to join, for you and your son. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

It is so hard to go through cdiff as an adult that I cannot imagine how awful it must be to have to watch your beloved child suffer with it. Be sure to read the section in FAQ about children and cdiff. What finally worked for me was pulsing; see the FAQ section for more info. A number of parents on this site have had children with cdiff, and I hope that some of them post. And I hope that your new GI doc is helpful. They tell me that everyone beats cdiff eventually, so know that that day is coming for your son. Good luck. Let us know how it goes.

[fire7163]

Unfortunately C-diff can be extremely difficult for some of us to beat, and relapses do occur. Some doctors have been using Xixfian as a chaser for the Vanco therapy. This has worked for a number of us. You might consider asking about it.

Fire

[Bobbie]

Ilovemyson,

I see others responded to your post after I answered your PM. Dr. Lamont has a fine reputation as a C. diff. specialist. He is listed in Doctors. Did he recommend a scope for your son? Dr. Kelly Karpa's son had C. diff. & she had good luck with probiotics with him. Info. on her is listed in FAQ.

Your son's prevous good health will eventually help him get over this. Of course, it is affecting your family life -- any chronic illness does. I used to be active in the AAFA (Asthma & Allergy Foundation of America) and read that about l to 4 marriages involving asthmatic children end in divorce. The mental toll of C. diff. if awful & difficult to explain to anyone who hasn't been through it. Perhaps counseling would help?

Let us know how you & your son are doing & be sure & take care of you, too. I'm sure something will eventually work. Has anyone mentioned pulsing to you? (Info. is in FAQ. It worked for several on this site.)

There are few "real" answers with C. diff. just trial & error which is why we call it the WWW disease -- watch, wait, & worry.