JuliaFaith

Thank you for your input. We tried to get an appt. with Dr. Torgeson but he is too full to see us. So we are waiting to see what to do next. My son is 12 and was diagnosed thru the Cunningham Study just a few weeks ago. I feel for you having 2 children with this. How long have they had this? Does this run in families? Do they think it is inherited? One of the questions on the Cunningham test was whether anyone in my family has had Rhuematic fever. I also have a 22 yr. old son who has never shown signs of this. Best wishes to you and your family.

This is good to know about. We have not done IVIG yet either. We are looking forward to hearing that symptoms are getting better. Hang in there and best of luck.

We also see Dr. Keller! She is amazing! We are in the process of trying to get into Children's but the one Immunologist that treats PANDAS is really full so I am checking around in the meantime before we see Dr. again. Thank you!

After reading several posts, Iam curious about the symptoms. My son has a 'clearing of the throat', headache, muscle aches, stomach ache, 'hot/cold chills' and has had these for 3 mos. following a year of several illnesses. None of his illnesses were strep throat. He did have a bad cough during his last illness and since then a lot of flu-like symptoms. He also refuses to sleep alone anymore (this started a year ago with stomach pain). He has been through endoscopy,gluten-free diet (still is), two tries at Prednisone by his Dr., 2-weeks of antibiotics [which were treacherous on his stomache], and we just got a confirmation back on PANDAS from a University of Oaklahoma study. Are these typical symptoms? After a full week, still trying to get an appt. with an immunologist who is the only one who treats PANDAS, at least at that hospital in Seattle, WA. He apparently has a huge waiting list for July already. Do you know of any other immunologist in the Seattle area that treat PANDAS?

Redmond, WA - Dr. Cynthia Keller