New Here and appreciate any advise /help!

[Guest guest]

Hello, Sorry this may be long but I will try to keep it to the point!

In Jan 07 my then 9 yr old son had a fever for 3 days and he has

never been the same since. His immediate symptoms were spaciness and

tingling in his arms. Basically his entire personality changed. He

was a happy, vibrant kid who turned into a zombie. Kaiser(my HMO)

diagnosed him with seizures and we spent 8 months trying every sz med

possible and nothing helped.

I decided to go to a DAN Dr to get to the root of the problem..and he

had a PANDAS panel and it definitely showed HUGE immune system

dysfunction...So Kaiser did 3 IVIG for me. I have tried numerous

supplements, chelation, you name it I probably have tried it. Right

now we are on azith, acyclovir to try to modulate his immune system.

We saw a neuro at Stanford and he diagnosed him with " auto immune

encephalitis " which i am still trying to research and figure out what

exactly that means..Kaiser is convinced he had something viral that

did this, but my gut tells me it was untreated strep..The Stanford Dr

states in the report he should have had a lumbar punch but it's too

late now...

So why am I here? After 2 years he has hardly gotten better..he's

still a zombie most of the time, he's totally regressed in school,

he's lost that smile he used to always have.

I would love to hear from anyone who has had a similar experience..

or anything suggestions...thanks!!