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Mitsydog70

Dr. Rao-please help, PANS - pm with info

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Hi all,

 

So we have used Dr. Rao in the past as a DAN doctor and had good success. This past year my 14 year old son with PDD started digressing, OCD behaviors, you all know all the symptoms. Anyway we saw Dr. Rao in November, he drew labs but before he drew the labs he suspected PANDAs.

 

The labs show VERY high titers for almost every virus tested. HHV6, EBV, Cocksaxie, and mycoplamsma pneumonie. We started the turmeric, N-acetyl-cysteine and vitamin C and did not see any change. The next week we were to start ibuprofen, benedryl and something else (i don't remember) but it didn't do anything either.

 

So we are going back up (didn't have money and it really STINKS that he doesn't take BC/BS) but I wonder if since its viral he'll start him on anti-virals? Before we had the labs he said the next step (in PANDAS, not PANS) was going to be steroids, then IVIG and plasmapheresis.

 

Please PM with any help at all. I'm in nursing school right now and I'm so overwhelmed with helping our son. He was doing so well until he stepped on a nail and I made the life changing call of giving him a tetanus shot. I didn't want to, but feared for his life.

 

Also, if we do end up having to do IVIG or plasmapheresis are these procedures dangerous? Like I said I'm usually not overwhelmed but THRIVE on research but right now I'm trying to finish school so my husband can have some financial relief.

Thank so much!
Jana

Bryan, TX

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I'm not sure if you were addressing this post to Dr. Rao, and that's why no replies?

 

If not, I'll put in my 2 cents, (as a non-MD).

 

My son's immunologist had started him on Valtrex and antibiotics when he saw high titres for EBV, HHV6, and mycoplasma, as well as ibuprofen and gabapentin (Neurontin) as anti-infalmmatory & neuroprotective. DS had kept getting monthly infections during this entire time, with a flare with each infection, so it was hard to say that anything was helping significantly. And it turns out that DS also had undiagnosed babesia and likely Lyme, so the antibiotics and antivirals were likely necessary but not sufficient.

 

From what I've read & heard, it looks like IVIG will "stick" better if you are able to track down and treat all infections before giving IVIG. Without that the inflammation and BBB disruptions will just continue. Also, some folks (like llm) had bad experiences with IVIG when her DS had undiagnosed Lyme + co-i. Her DS wound up with a very strong herx reaction after the IVIG ( FWIW mine did not, but he also improved much more after IVIG #2, about a month after we began treating the babesia.

 

BTW, we've at times gone for a consult to an out-of-network doctor, but then took those recommendations and lab slips to our open-minded in-network doctor, who generally was willing to write those lab orders himself, and this way they were covered better. So we only had to pay for the consults, but at least not as much co-pays for the tests and treatments.

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Don't know if it helps, but my kids had stubborn strep and many viral infections. They (3 years ago at ages 6 and 7) responded beautifully to HD IVIG...all acute symtpomsndisappeared. But it didn't hold. Treating the underlying (strep) infections with a longterm abx combo and antivirals to lower viral load + a years worth of monthly IVIG for mild immune deficiency...they've been holding at 200% for almost 2 years...Monthly IVIGs at .5g/kg take about three hours at home, they play on the xbox and miss no school. They sailed through the HD as well.

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