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Misskbrady

Texas PANDAS doctors

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Hello,

 

My almost 6 year old son was diagnosed with PANDAS in October. His condition was triggered by strep.

Our treatment protocol has included extended use of antibiotics (helpful), naproxen/ibuprofen (not helpful), and three courses of IVIG infusion therapy (helpful, but only temporarily). We are working with a rheumatologist and neurologist in Austin, TX. We have also been doing CBT with a therapist since October.

My son continues to have issues and I am wondering if you anyone can provide any guidance as to what our next step should be. Every time he gets strep (and he gets it even while on low-dose preventative antibiotics!), he has a huge flare up of his OCD/tics. And his handwriting and executive function are getting worse.

We have not seen a PANDAS "specialist" but rather are working with doctors here who know of the condition and have treated patients with it. They seem to be somewhat in the dark, however. I saw on the Pandas Network website that there are two doctors listed who parents recommend--Dr. Sesgagiri Rao and Dr. Shreenath Doctor. Does anyone have experience working with these docs? Good or bad?

 

Also, for those of you who have gone the IVIG route, how long did it take to see improvement? We see some improvement post-treatment but it never lasts.

Please respond if you can.
THANK YOU!
Kathleen

Austin, Texas

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Hi- I don't have a lot of input for you, but I have taken my son to Dr. Rao for one appointment. He was very nice and extremely knowledgeable about PANDAS. He spent almost an hour talking to me and my son, explaining PANDAS and treatment options. There were a few reasons we decided not to pursue treatment with him at this time:

#1- He didn't take our insurance (BCBS), so continued treatment was going to be very expensive. But he does take many others.

#2- Office wait times- We waited 1.5 hours after our appt. time to see him. I'm ok with this if it is the exception...unfortunately, I have heard from many other moms that this is actually very common and wait times can extend to 2-3 hours past scheduled appt. time. Many love Dr. R enough to wait...unfortunately, this was a HUGE problem for my PANDA and his germ/contamination fears.

#3- Dr. R would not take (or even look at) the blood work my son's pediatrician had ordered 2 weeks prior to our appt. He wanted another full workup done...THAT DAY. My Panda flat out refused to give another 15 tubes of blood with no time to prepare.

 

Having said all that....I am in a FB group with many moms in the DFW Area that absolutely LOVE Dr. R and would wait for hours and hours to see him with no hesitation.

 

Also, is there a reason you have not kept your son on high dose antibiotics since he keeps getting strep? We had the same issue with my son...his was a peri anal rash that kept coming back if we lowered the dose or stopped for even a few days. He has now been on high dose antibiotics for 30 days straight and we have seen the most improvement since he was diagnosed in January. I know that every time mine gets strep (or is exposed by his sister), it is like starting ALL over again. I have talked to another mom whose daughter was also treated by our pedi and she said it took 5 months on high dose before her daughter turned the corner.

 

Sorry, know nothing about IVIG...we haven't gotten that far yet. :)

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Thank you so much for this feedback. I am also looking at doctors in Houston. All the info you sent on Dr. Rao is great. I have BCBS and would need to use my insurance, so that would be a problem for me.

 

My son's rheumatologist was concerned about extended use of antibiotics both as a gut issue and potential issues with antibiotic resistance. But perhaps I should advocate to put him back on them.

 

What antibiotic is you son on and what dosage? We've had the most luck with cedifnir.

 

Thanks! And if you ever want to reach me, my email is misskbrady@gmail.com.

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My son is on Augmentin ER 1000mg, 2x a day. He has never taken cedifnir, so I can't compare the 2.

 

I worry about the gut issues too, but use probiotics and do the best I can with his diet. He is very limited with food, so this is very hard!

 

Just curious, were you able to get BCBS to pay for your son's IVIG? I am staring to explore IVIG for my son, but am hesitant due to cost.

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Hi, could you tell me if you ever found a PANS specialist who takes BCBS? I'm in Georgetown but am willing to travel anywhere in Texas. My GP thinks my daughter is PANS. She consulted with Dr. B in New York and he said to get her to a specialist. I'd appreciate any direction you could give me.

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I just joined and am also looking for a PANS doctor for my 19-year-old who just received her positive Cunningham Panel results. I've suspected PANS/PANDAS since she was about 8 but could never get confirmation and a diagnosis. We live in Houston but are willing to travel. Dr. Shreenath Doctor wouldn't take her on as a patient (no reason given). I know two people who travel to see Amy Smith in CA and speak very highly of her. I would be happy to work with her but my husband wants me to keep searching to make sure I find the best person possible. Being near Boston, West Hartford, Philadelphia, Los Angeles, or Philadelphia a bonus since we have people we an stay with there. Suggestions please. Oh, and they need to be willing to treat 19-year-old who also has Lyme. No problem, right?

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