Update on Dr. Rao in Plano, TX, for PANDAS treatment

July 13, 2010

Hello All,

As a reminder, I had a phone consultation with Dr. Rao on June 25 and was very

encouraged at the prospect of him treating our youngest daughter for PANDAS.

Dr. K in Chicago diagnosed both of my girls with PANDAS after I sent him

documentation on both of them (their titers were in normal range so he diagnosed

purely on symptoms and history). Oldest daughter went to Dr. K end of May for

IVIG treatment and is slowly improving. Younger daughter unable to travel to

Chicago.

Dr. Rao ordered more blood work on youngest daughter. I talked with him today

on the phone (I am in Austin) and again her blood work was in the normal range

for everything he tested. Even though her strep titers and her mycoplasma are

showing normal, he is willing to treat youngest daughter with antibiotics based

on her symptoms. He is also willing to do IVIG if this is something we want to

do. We are hoping that she will improve a great deal on antibiotics so that we

can travel to Plano for IVIG.

Dr. Rao called Dr. K in Chicago and consulted with him about IVIG treatment.

Dr. Rao is willing to go with Dr. K's protocol on IVIG if this is what we

prefer. I am so impressed with Dr. Rao. He seems so open minded and willing to

do whatever it takes to help the child. When I was telling him all of the meds

my child is currently taking, I was impressed again when he told me that he

prescribes LDN (low-dose naltrexone) which is something my youngest daughter

takes for IBD (Inflammatory Bowel Disease). I couldn't find a doctor in Austin

to prescribe this to my child and had to call a doctor in New York and do a

phone consultation with him to get her the med. That's a whole different story.

But this just showed me that he is a doctor who thinks outside the box, unlike

most doctors today.

I know someone on this list had a disappointing experience with Dr. Rao, but I

have found him very easy to talk to and very open minded and helpful. I know

his office is pretty busy like the other doc's who treat PANDAS. There was a

mistake in how the blood work order was written and a phone call had to be made

from the lab to Dr. Rao's office to get it corrected, while we were at the lab

waiting with our daughter. And then today I found out that he had forgotten to

order a TSH test on her as well due to her numbers being off last time. So, I

have to agree with others who have stated that these doctors are very busy and

overwhelmed but they are good doctors and are trying to help us. It is

definitely up to us parents to stay on top of things, remind the doc's, ask

questions, check up on results, etc. Thank God they are willing to help us when

so many others just turn us away.

Deneen

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