Looking for help in Rochester, NY

[FrogPrince]

My 7 year old was diagnosed with PANDAS when he was 3. He had all symptoms except the tics. We had never heard of PANDAS and nobody around here did either and even just 4 years ago there wasn't much info to be found. Everyone that we took him to would say that they heard of it but thats it. It seems that they listen but then treat him for what they know about...which would be the symptoms such as anxiety and mood disorder.

 

He is currently being treated for anxiety and bipolar and he is up and down with all the medication changes while they try to figure out what will work for him. His current pyschiatrist told us taht he isn't stable and suggested long term hospitalization after the medication that he put him on made him extremely manic and aggressive. He saw him when he was sick and his medications do not work when the PANDAS takes over.

 

Is there anyone in the area that someone could direct us to? I'm willing to start anywhere...a doctor, a pychiatrist, a counselor, anyone who is willing to at least listen and point us to someone.

 

Thank you

Edited February 26, 2012 by FrogPrince

[oivay]

I wouldn't go anywhere near Dent..........

 

Is there any way you could travel to one of the Pandas specialists? Maybe you could contact Dr. T and possibly see him the next time he is up there for the LeRoy girls?

[kimballot]

I sent you a PM.

 

Look for a notification in the upper right corner of your screen - near your login name.

[FrogPrince]

oivay...can you be more specific?

 

kimballot...PM returned.

 

Thank you

[oivay]

Check out the threads for the LeRoy girls.

 

It seems like most of the neuros around Rochester don't believe in Pandas, and are pretty enthusiastic about diagnosing just about everyone who comes through the door with a conversion disorder. (See the thread where they say they diagnose 2 or 3 conversion disorders per week.)

 

This isn't a path that's likely to lead to any treatment. Having a kid with Pandas is a lot like having a second job, and it really, really, really pays to go to someone who knows what they're doing.

[nicklemama]

Go see one of the big names of PANDAS docs in your area...Dr Trifiletti in New Jersey, Dr Bouboulis in CT, or Dr Latimer in MD. Your child needs PANDAS treatment. I'd bet a lot of money he is also NOT bipolar. We were told our son was Aspergers and Bipolar. He is neither. He's doing very well today, after PANDAS treatment, and now on prophylactic antibiotics. The only prescription meds he's taking is Augmentin and some allergy drops for his eyes.

[EAMom]

Go see one of the big names of PANDAS docs in your area...Dr Trifiletti in New Jersey, Dr Bouboulis in CT, or Dr Latimer in MD. Your child needs PANDAS treatment. I'd bet a lot of money he is also NOT bipolar. We were told our son was Aspergers and Bipolar. He is neither. He's doing very well today, after PANDAS treatment, and now on prophylactic antibiotics. The only prescription meds he's taking is Augmentin and some allergy drops for his eyes.

 

Agreed! I should also mention, that some PANDAS kids end up seeing more than 1 doc. Each PANDAS doc has their strengths, and sometimes it is helpful to see more than 1. But, it is fine to start with one...

 

In any case, your child needs a MEDICAL workup and treatment, antibiotics, maybe IVIG or PEX, maybe steroids.

Edited February 27, 2012 by EAMom

[NancyD]

I also highly recommend Kenneth Bock, MD, who is in Rhinebeck, NY.

[nicklemama]

I just finished reading Dr Bock's book. He's familiar w/ PANDAS and the treatments he recommends appear to be good for PANDAS kids.

[NancyD]

We have been going to him for over 9 years -- he diagnosed my DD16's PANDAS, Lyme, and Bartonella, as well as my Lyme and Bartonella. He treats PANDAS with abx, HD IVIg (available at his office), supplements, etc. He was supportive of our doing plasmapheresis. He's a great integrative MD and has many years experience diagnosing and treating PANDAS, Lyme, and other TBIs. He will do full immune workup, check vitamin/mineral levels, do some genetic testing as needed, check for bacterial and viral infections, test for toxins, etc. Feel free to PM me if you have any questions.