headed for IVIG

[PANDASmcnuggetsw/fry/coke]

We have not posted a while about our precious daughter 12, as we were trying our doctor's reccomendation of 30 days Biaxin and 30 day prednisone taper. We had a good first week there, but now at the end of the 30 days, the wheels are falling off again. Intrusive thoughts are becoming worse and more debilitating. Some new tics are popping up at night and she previously didn't have much in the tic dept.

 

Dr K of course says head to IVIG but we are wondering if we need to make sure her myco is killed first. Her sinusitus is gone we think, but Dr K does not seem to think it matters if the underlying infection is killed or not.

 

We tested negative for lyme, but she DID get her very first sore on her lip which I would presume to be an oral herpes 1 type. (and never been kissed :-) Should we do an anti-viral for this? Recheck myco levels before IVIG?

 

What else should we do before going to IVIG?????

 

Thanks so much and blessings to you and our precious children,

 

PANDAS McNuggets w/fry/coke

[norcalmom]

Seems like you done alot already. Like the lyme testing, and myco P. What antibiotic is she on?

 

IVIG was scary, but once we did it, it wasn't as bad as I thought it would be. I'm ready to do another if needed...and it took me months to get to a place where I was convinced to do the first one.

[PANDASmcnuggetsw/fry/coke]

She has been on Biaxin 500mg 2 x day. Our doc is now going to double the dose, so that will be 2,000 mg a day. He wants to see how she is doing in 14 days, saying the mycoplasma is hard to kill. He also is contemplating another steroid taper, but a more gradual one. I don't understand how for some folks, the steroid taper can be almost a curing thing while for others, the child bounces back to the old symptoms as the steroid tapers down. Why would a second one be worthwhile? I'm not sure.

 

So far has your first IVIG seemed to have restored your child's health?

 

Thanks for any help!

PANDAS McNuggets w/fry/coke

[Fixit]

We have not posted a while about our precious daughter 12, as we were trying our doctor's reccomendation of 30 days Biaxin and 30 day prednisone taper. We had a good first week there, but now at the end of the 30 days, the wheels are falling off again. Intrusive thoughts are becoming worse and more debilitating. Some new tics are popping up at night and she previously didn't have much in the tic dept.

 

Dr K of course says head to IVIG but we are wondering if we need to make sure her myco is killed first. Her sinusitus is gone we think, but Dr K does not seem to think it matters if the underlying infection is killed or not.

 

We tested negative for lyme, but she DID get her very first sore on her lip which I would presume to be an oral herpes 1 type. (and never been kissed :-) Should we do an anti-viral for this? Recheck myco levels before IVIG?

 

What else should we do before going to IVIG?????

 

Thanks so much and blessings to you and our precious children,

 

PANDAS McNuggets w/fry/coke

 

 

there was just talk of checking glutathione levels...

i guess you checked your subclassess.

have you thought about tonsils

[norcalmom]

IVIG has been good for us. Contemplating another.

 

We are on Azith - that has also been good for us. I'm comforted to know that Zith is good for bacteria that don't have cell walls, like certain parts of lyme and myco P. I don't know anything about Biaxin..I think I've read it is one of the ones you can only take for a shorter peroid of time, and I assume is a good one for myco P.

 

Good luck to you with your decision! That is much harder than the actual procedure.

[kmom]

Norcalmom,

 

We're embarking on our 1st IVIg in just over a week w/ both kids w/ Dr. B. Could you tell me which symptoms are leftover as to why you think you'll need a 2nd round? Dr. B. told us it could take more than one but just curious about your experience. I am also waiting to hear from our DAN Dr. if he'll test the kids' glutathione levels ASAP. After talking with a few people and researching, I feel it in my bones, that could be our issue after studying their history. At the very least, I'll get to rule it out if levels are high.