Please PM me your thoughts on Dr. Rao

[riffleshell]

After a year of this PANDAS nonsense, I'm finally biting the bullet and taking both my kids to see a specialist, Dr. Rao in Plano.

 

I've posted about my oldest fairly frequently. He was diagnosed with PANDAS about a year ago and is doing very well, but he had a minor flare this week. I also suspect my youngest has PANS/PANDAS but he does not have high strep titers and his symptoms (incontinence, inflexibility, separation anxiety) are fairly mild and did not onset suddenly.

 

Please send me private messages about your experiences with Dr. Rao as I believe the administrators do not want us reviewing the doctors in public forums.

 

I want to know:

• What tests did he do for you or your child?
• How was working with his office? I live 4 hours away and will need to be in phone communication with his staff. How did that work out for you?
• Is he known for having one treatment he always recommends?
• If you have a milder case (as both my boys are) what did he recommend for you?
• Anything else I should know?

Thanks!

[DebC]

Sent you a message.

[Mayzoo]

Message sent, grab a cup of coffee first...I am long winded sometimes

[mybabyo]

Any chance you guys could forward me the same info. He just diagnosed my son with PANS/PANDAS and we have an appt. on Thursday to explain it all to my son. I have already met with him. My son is really struggling right now with his tics. They are worse than ever. He says it is because of stress. He is a very busy 16 year old with AP classes, marching band, Boy Scouts, tennis, and a few other things. I know he is stressed. We are really hoping Dr. Rao can help us. I am so afraid of getting my son's hopes up and this treatment doesn't work. We waited months to see Dr. Rao. I very curious about how others have done there.

[Mayzoo]

Any chance you guys could forward me the same info. He just diagnosed my son with PANS/PANDAS and we have an appt. on Thursday to explain it all to my son. I have already met with him. My son is really struggling right now with his tics. They are worse than ever. He says it is because of stress. He is a very busy 16 year old with AP classes, marching band, Boy Scouts, tennis, and a few other things. I know he is stressed. We are really hoping Dr. Rao can help us. I am so afraid of getting my son's hopes up and this treatment doesn't work. We waited months to see Dr. Rao. I very curious about how others have done there.

 

Will do....good luck.

[riffleshell]

Thanks so much to everyone who responded. Sorry I got a little swamped and didn't write back -- my youngest broke in full-blown strep and is showing lots of mildly odd behaviors, so suffice to say, I was not on the computer much.

 

But your emails were helpful, I'm feeling good about my decision to go up there. I hope he can give me some answers.

[DebC]

riffleshell -- Best wishes as you travel for your appointment. We will be praying that your youngest heals quickly and that the behaviors disappear as quickly as they appeared.

mybabyo- Just forwarded information on Dr. Rao to you.

[Texasrangerfan]

This is and older thread but we are seeing Dr Rao in a month. I would like to know any thoughts and experiences with him. Positive and negative. Please PM me.

[PanDad]

Hello all, could anyone forward me thoughts on Dr Rao? We are seeing him tomorrow. Thanks so much!

[SearchingInTX]

Sorry for finding a zombie thread, but we have an appointment with Dr. Rao next month. We will be flying in, so as you can guess we are a little desperate for a solid opinion. If anyone could PM me with their thoughts on Dr. Rao and how we can make the most of our appointment? Also what to expect from the appointment? I have heard that most doctors that treat PANDAS don't accept insurance, but he does accept ours, which seems almost too good to be true. Any thoughts or insights would be much appreciated! Conversely, since we are flying anyway, is there another doctor in TX that you would recommend over him, and if so, why? TIA!!