Evalutaion For Tremors

[looneymom]

Hi Everyone

Still do not have Tyler's immune system or Pandas testing results back yet. Should know something by September 11th. However, Tyler did not respond to an increase in the Strattera. When it was increased, he stopped sleeping through the night for several nights, his vocal tics increased and his appetite was gone. When this happened I dropped him back to the original dosage. Two nights ago, he started sleeping through the night again. His doctors want to keep the sleep cycle in place. This could help resolve some other symptoms down the road. After all, being sleep deprived for over six months might be causing some of these other symptoms.

Our neurologist and cardiologist has tried everything they know of to help with the tremors. If the test that we are waiting on show nothing, they would like Tyler to be evaluated for the tremors and revaluated for the POTS. My husband and I do not want to take Tyler back to MAYO for this evaluation. What other places would be good to deal with? We do not mind leaving the state to go see another doctor but we would like to find a doctor that would communicate by email or phone and would be willing to work with our other doctors. Any suggestions?

Rachel

[jpjd59]

Rachel:

I know California is quite far from where you live but there is a neurologist at Stanford (Dr. Safwan Jaradeh) who specializes in POTS. If Tyler's results come back showing nothing, you might want to call his office and talk to his nurse practitioner, Cynthia, to see if that is something that they could help with and if they would be willing to work with Tyler's doctor(s) back home.

Pam

[arizona girl]

Hi Rachel,

I forgot where you live. I live in Arizona and I see a doctor at Phoenix Neurological Associates. They have a website you can look at. They specialize in autoimmune neuromuscular illness and Dr. Hendin sees peds patients with seizure disorders. He successfully treated the daughter of one of our friends. She is now driving again.

My doc is on medical leave, but any of the docs there are good. They have the ability to test for rare disease and do skin biopsy, if you haven't had that done. They also have an infusion center where they treat everything from crohns, als, ms, cipd, etc.

Also Barrow Neurological institute is here and they excel in brain disorders. The Mayo here also has the beloved Dr.Goodman. I don't know if he sees peds though.