Please help...need a doctor in Dallas/anywhere for PANDAS

[poetmom]

Hi Linda,

That's definitely good information to have about Mazade and I will keep it in mind. I think it's been lucky that my son seems to have responded quickly to the antibiotics - a simple solution given how things could be and I hope things don't change. From reading here, I don't think I really realized just because he reacted one way during one episode that it couldn't be an entirely different scenario during a subsequent episode...

Thanks

Robin

 

Robin

 

We saw Dr. Mazade at Cooks and his response was that our son's symptoms were not the same as his previous "other 2 Pandas patients", so therefore he did not have Pandas. I had test results from Dr. Cunningham, he didn't read them, just looked at the papers for about a split second, then he said sorry, can't help you, We also saw a neurologist at Cooks, Dr. Acosta, who said there was no such thing as Pandas, your son has tourettes. He refused to look at the papers, said they meant nothing to him. He aslo said he wanted something from a credible university, I guess OU is not credible enough for him.

 

We had already don the prednisone with Dr. K at the time, and my son did respond. So along with Dr. Cunninghams test results and the fact that he had responded to the prednisone, we knew our son has Pandas.

 

Dr. Cunningham had originally suggested we use Dr.Istre in Dallas, but when we talked with him, he saw only patients that were already in the hospital, and he told us that any doctor at Cooks or Southwest UT would be fine. I guess not.

 

We have since gone to Chicago and had IVIG with Dr K, we also saw Dr. Latimer at Georgetown, both agreed that my son has Pandas, we will be doing the PEX with Dr. Latimer in a few weeks.

 

I'm glad you had luck with Dr. Mazade, but he needs to look and think outside of the box and know that all of these kids do not present with the exact same symptoms.

 

Dr. Acosta, the neuro at Cooks was quick to rx drugs, but would not even consider Pandas. However, when I mentioned a possible study from Dr. Leckman at Yale and Latimer at Georgetown, then he said he might be interested in placing some of his "tourettes" patients in the study. Yeah right!

 

I have been fortunate enough to have found a local Pediatrician who did talk with Dr. K and is willing to prescribe the zithromax on a monthly basis for my son. She was honest enough to say "I really don't understand Pandas, but I'm willing to learn".

 

Linda

 

 

 

Hi - I'm new to this blog and will post an intro in a minute, but this one caught my eye because we live in the Dallas area. My ds (5yo now) was diagnosed with PANDAS in 2007. We have only ever seen a pediatrician and an infectious disease specialist, but I really, really like both and I have seen my little boy go from a child I know longer knew, understood, or could stand to be around (I'm ashamed to say) to a child who is loving, affectionate and interactive.

Anyway, our pediatrician is Dr. Wilfred Raine in Arlington. Our Pediatric Infectious Disease Specialist is Dr. Mark Mazade in Fort Worth. Both are part of Cook Children's Medical Center and both are kind, patient and understanding.

Particularly with Dr. Mazade, who is probably one of the gentlest human beings I've ever met, even in the midst of my ds first episode, my son felt comfortable with him [read: looked at him and spoke to him] on the very first visit.

 

I hope this information is helpful to you.

 

Robin

[Rksa]

Hi Madhu and others please let me know if you did find right doctor to test and great pandas in Dallas or elsewhere in Texas, as I am in same desperate situation feeling blamed for and watching my dd suffer for past 3 yrs

[Mayzoo]

Hi Madhu and others please let me know if you did find right doctor to test and great pandas in Dallas or elsewhere in Texas, as I am in same desperate situation feeling blamed for and watching my dd suffer for past 3 yrs

 

We see Dr. Rao in Plano. I will pm you some details, but we are overall happy with him. He is an immunologist who treats asthma, allergies, autism and is quite renowned in PANDAS.

 

 

TEXAS

• *Dr. Sesgagiri Rao (Leading PANDAS Physician)

  Immunologist

  972-964-7374

  Plano, TX

  will treat more complicated cases involving PANDAS and Autism

• *Dr. Bruce Russell (Leading PANDAS Physician)

  Pediatrician

  361-794-1930

  Port Aransas, TX

  May not be accepting new patients.

  Will treat more complicated cases involving PANDAS and Autism

• Dr. Shreenath Doctor

  Neuropsychiatry and Clinical Pharmacology

  713-524-3399

  Houston, Texas

http://pandasnetwork.org/researchandresources/find-help/usproviders/#TEXAS