Eye blinking? Doctors around Michigan?

[Jennifha]

I have two sons with Autism. My oldest is 6 and I have suspected PANDAS for a while. He wasn't stimmy as a young child. I didn't start until around 4 and then it was very intense stimming. He gets better on steriods and antibiotics (especially Zitrhomyacin).

 

My almost 4 year old is also diagnosed with Autism. He started an eye blinking tic this weekend very suddenly. He blinks extra hard, for extra long, then opens his eyes a little bit wider than usual. It happens very frequently. Not every blink, but probably most.

 

We don't currently have a DAN. I have no idea where to take him for treatment. I probably will start with the family doc, but honestly I think that they will be clueless. I am hoping to be able to go there with a request for a referral. Are there any neurologists in the Michigan area (including surrounding states) who are familiar with PANDAS?

[nicklemama]

Dr Harry Chugani at Children's in Detroit. Be prepared for a long wait to see him. Dr Chugani is doing PET scans on kids w/ suspected PANDAS. When I suspected PANDAS in my DS, I didn't know Dr Chugani was seeing PANDAS patients. I decided to do phone consults w/ Dr Trifiletti in NJ. After 6 months, we decided to go the IVIG route and went to Dr Kovasevic in Chicago. Your choices for PANDAS docs in Michigan are very limited.

 

We have a Michigan PANDAS support group on Yahoo. I'll pm you with the information.

 

Cindy

[Jennifha]

Dr. Chugani's wife is doing a research study for children with Autism using PET scans and Buspar. It isn't specifically for PANDAS, but I sent an email inquiring about participating anyway. I wonder if this would be a chance to get a free PET scan that could be used by other doctors to look for seizures or PANDAS. I don't think my BCBS will cover a PET scan. I remember when I was trying to get a SPECT scan covered (the business closed before I got it done). You had to get imaging pre-approved and the reasons were pretty restrictive.

 

Does anyone know much about PET? Are they all the same or would if have to be more specific if you are looking for something like PANDAS?

[michiganpandas]

where in michigan are you located....my dd goes to dr. Leleszi in Farmington Hills (child Neurology). (Michigan Institute for Neurological Disorders)

[Jennifha]

where in michigan are you located....my dd goes to dr. Leleszi in Farmington Hills (child Neurology). (Michigan Institute for Neurological Disorders)

 

 

We are between Lansing and Grand Rapids, but traveling to Ann Arbor or Detroit area wouldn't be a big deal. Thanks for the info.

[nicklemama]

Dr Chugani had some funds for PANDAS PET scans. Some of his funding ran out but I think he is still able to offer them to some of the patients. Its worth looking into. If the PET scan is positive, Dr Chugani is ordering IVIG.

[krista623]

Dr Harry Chugani at Children's in Detroit. Be prepared for a long wait to see him. Dr Chugani is doing PET scans on kids w/ suspected PANDAS. When I suspected PANDAS in my DS, I didn't know Dr Chugani was seeing PANDAS patients. I decided to do phone consults w/ Dr Trifiletti in NJ. After 6 months, we decided to go the IVIG route and went to Dr Kovasevic in Chicago. Your choices for PANDAS docs in Michigan are very limited.

 

We have a Michigan PANDAS support group on Yahoo. I'll pm you with the information.

 

Cindy

Cindy,

 

Could you also send me the info on your yahoo group? I'm new here and have a 10.5yo dd that has been diagnosed with depression, anxiety and oppositional defiant disorder...things were getting better for a while but have become increasingly worse in the last month and I'm now thinking it may be PANDAS and am looking for a local doctor and any info I can get my hands on.

 

thank you,

Krista