Doctor in Minnesota?

[Guest Motherbear]

Hello,

I am new to the forum and tried to post last night. My 11 yo son was diagnosed in March with PANDAS. He is getting worse. I applied to the national clinical trial and he met all the criteria, but we were over the 6 month mark in order to qualify. I have been to Dr. Kaplan at the U of M, who was very helpful, but not advocating aggressive treatment. I just found this forum and I am looking for help. My son has a history of Strep and has all the classic symptoms of PANDAS and seems to be getting worse. Since school started, he contracted strep on Sept. 5th and then again on Oct. 9th. Positive rapid tests. Is there anyone on this forum from MN who is willing to talk to me or is there a support group in Minnesota? Does anyone know if there are any doctors at the Mayo Clinic working on this? I have a good MD, but no protocol to treat my son, and I have a good psychologist treating his OCD and anxiety. I am helpless to help my son, and I see his symptoms affecting his life negatively. His separation anxiety is such that he does not want to go to friend's houses to hang out because of it, he is losing interest in Tae Kwon Do because of constant stomach aches and his hyper-activity is interfering with school. This from a typically reserved and focused child as little as 1 year ago. I am sick about my son's condition, and at a loss as what direction to go. Any advice, support, tools greatly appreciated!

Edited October 20, 2012 by Motherbear

[beeskneesmommy]

Beth Maloney's Site has a couple in MN: http://www.savingsammy.net/providers.php

 

Pandas network is a helpful site: http://pandasnetwork.org/

 

Dr. K in Ill. has a helpful site as well: http://webpediatrics.com/pandas.html

 

These are just a few that may help. there are also several FB groups where you can get support. If you have the ability to travel, get your kiddo to a specialist as soon as possible. It is very hard to get proper treatment from family docs or pediatricians. It is important to tackle it EARLY. The chances of recovery are much greater if you get your kiddo on LONGER TERM (more than 10 days and at the very least, 30 days, although I would opt for longer than that with active, recurring Strep) antibiotics in the early stages of PANDAS.

 

i am sorry that I have very little time right at this moment, but I would be happy to help you further if you would like to PM me. Your child can recover from this! You just have to go into strategic, aggressive, battle mode and don't let time slip by. I believe that in the beginning of this illness, this is a key factor in recovery.

 

You are NOT alone and there are many people who can and will help you! Best, Kath