PANDAS treatment? Where can I find?

[MSmom]

Where can I find an expert on PANDAS? I am in Missouri but will travel. Have any of you had any experience with Dr. Fuhlbrigge in Boston?

Thanks,

Pam

[T_Mom]

Where can I find an expert on PANDAS? I am in Missouri but will travel. Have any of you had any experience with Dr. Fuhlbrigge in Boston?

Thanks,

Pam

 

 

Dear Pam, I am sorry you have had to be asking this question--At the top of this Pandas page forum there is a "helpful threads" administrative post. Open that and in there is a list that parents have compiled of doctors they have seen --who have helped. Someone also alphabetized a summary list of the same, but I am not sure where that is on the forum.

All the best, I hope that helps.

[Sheila]

Hi Pam--This is a list by state that members have posted:

 

http://www.latitudes.org/forums/index.php?showtopic=6428

 

and here's a lot of similar information in a different form:

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

You have to take some time to find your way through the list and make your own decisions.

 

Finding physicians for the evolving field of PANDAS is challenging, and many doctors on this list use different approaches or have varying specialties. Needless to say, none of the members posting nor our forum/ACN can be responsible for the outcome when patients go to these doctors. Everyone posting physician information is just trying to share what they know in the hopes it will be helpful to someone else. We have no way to follow up with these posts to get input from others. And of course what works for one one patient may not be the answer for another.

 

With all that said, I certainly hope you find the lists helpful and that you can locate a wonderful physician. Sheila

[EAMom]

Where can I find an expert on PANDAS? I am in Missouri but will travel. Have any of you had any experience with Dr. Fuhlbrigge in Boston?

Thanks,

Pam

 

Hi Pam,

here is a recent thread that discusses Dr. Fulhrigge. NancyD and Monarchcat have seen him. http://www.latitudes.org/forums/index.php?...art=#entry63788

 

Dr. Latimer (DC), Dr. Trifiletti (NJ), Dr. Kovacevic (sp? Chicago), and Dr. Boubolis (immunologist CT) are the the most used docs on this forum.

Edited April 20, 2010 by EAMom

[laurenjohnsonsmom]

Hi Pam,

 

There is a Rheumatologist in MO who just treated another girl (13 years old) who had a SEVERE sneezing tic. This girl was REALLY sick since Dec. 09. Numerous doctors at the childcare's hospital told her parents they did not believe in PANDAS. This doc finally ordered IVIG and hospitalized her to do it over 24 hours. This little girl is doing great now. Stopped sneezing in the middle of treatment. Trust me, this doc is a believer now. Maybe he can help. I will find out the Dr.'s name and PM you asap.

 

Lynn

 

Where can I find an expert on PANDAS? I am in Missouri but will travel. Have any of you had any experience with Dr. Fuhlbrigge in Boston?

Thanks,

Pam