9yo fed up

[JenniferG]

Thank you so much for all the helpful posts. To answer a few questions...

 

She had IVIG Nov 27th we saw a huge improvement the next day that lasted for a day. Then small improvements until she got a sinus infection and C Diff...then regression.

 

We saw GI today... She said to stop Vanco. That some of Meg's symptoms could be side effects of Vanco. And call her if she gets diarrhea...she said she doesn't have C Diff w/o diarrhea. I was so frustrated needless to say.

 

Dr. B. recommended against steroid because he said it will help the C Diff flourish.

 

I don't why, but just today I remembered about Motrin. I will try it tomorrow.

 

we tried Enhansa (it was way to much for her), ABio ( the same....really bad die off with 1 drop), She seems to handle Oil of Oregano well......any info on how much and how often?

 

The GI recommended Culturelle because of the gaurantee of the viability of live cultures.

 

I gave her 1/2 a Zithromax tonight and because it stays in your system for a day, I will ramp up probiotics tomorrow and skip Zithromax until Wed. And continue to see if that helps.

 

She also is dairy free, mostly gluten free and we do Epsom Salt baths....which are very helpful.

 

I am waiting for the Pyschologist office to call with an appointment,

 

Of all the reading about C Diff, I haven't heard to do GSE...I will read abut that tonight!!!

 

Thank you so much for thoughts and prayers.

[Missmom]

Just FYI, not wanting to alarm you but you can have c diff without diarreah. I was recently diagnosed with c diff only because during a colonoscopy the doctor sent off many different labs and c diff was what came back positive. I never had lots of diarreah with it I had more like ibs symptoms, I had not been " normal" for quite a while. I know some labs don't even like to test a solid stool sample for c diff, but had that been the case they would not have tested me.

 

I feel for you and what you are going through. I know it is so hard to know what your daughter needs and not be able to give it to her.