The outcome?

[SSS]

I don't even know if I should contribute here, I'm such a 'newbie'

All I do know for sure, is that each of our children's illness is not the same.

I believe in my heart, and also after testing, that my dd5 is true PANDAS, left untreated for years, and it is all auto-immune at this point, affecting her brain. CamK 175.

We have been on anti-biotics for 3 months now. Currently on the last day of a steroid burst.

We do not have immune panel defientcies. In my heart, I am quite certain we do not have lyme (no ticks ever, not in tick area, she has been sheltered, DH and I have never had a tick, never had a pet.)

We have exposure to strep as an infant, with untreated fevers and jump off head growth chart, documented strep again at 2 years of age- everything down hill after that-

I have spent years and $$$$ trying to help and figure out my dd5.

Our insurance, HMO, is a tightly shut closed door.

I am working with 2 PANDAS specific Dr.'s for consultation.

We will be getting our 1st IVIG in the next few weeks- getting it set up this next week coming-

We are paying cash for it. We will do this 1 IVIG, and wait it out- with continued use of antibiotics after. We cannot afford to do several. I frankly don't want to do more that 1.

I have to learn to be patient, but at the same time, I am going forward to treating. Like all of you, our family has been deeply affected.

And, my little 5 year old girl truly, truly suffers.

 

After this IVIG, and continued antibiotics, and some natural remedies I also have to implement, we will wait out the year, and see where we are--

Edited February 20, 2011 by S & S