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Washington State - Seattle area PANDAS support group?


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Is there any sort of PANDAS support group in WA State? I've posted a few times looking for resources and have only heard from two people in my area - surprised there are not more . . . I may have to branch out to OR & CA! Desperately seeking resources and would love to connect with another family who has gone through this. My son is 12 - (13 tomorrow) and I would love for him to have a chance to talk and hang out with another kid who has been through this. I know he is super confused and scared about all this, but he continues to have a brave face and even says, "Don't worry Mom - its all going to be okay - I'm going to be okay!" Please reach out if you are in the Seattle area. I'm specifically looking for PANDAS friendly neurologists associated with Seattle Childen's Hospital.

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  • 5 months later...

My son has PANDAS. We are in Bellingham. We have done antibiotics, are in the middle of a 5 day prednisone burst and will travel to IL on the 15th for IVIG after finding limited resources here. Our Pediatrician here has been amazing though: very supportive and is writing letters of support for our course of treatment so that we can try to get more coverage from insurance. There is a ND in Vancouver, BC who we are going to see in September. She is listed in the PANDAS network and supposed to be very good. 

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We are north of Bellingham,  I've actually found more Pandas help in Washington than in Southern California. Unless you have deep pockets and use one of the three DANS/Pandas doc's who don't accept insurance. The clinic opened in Stanford opened but was overwhelmed and 6 months after opening stopped taking patients out of state. center for healing neurology, Dr. Ilene Ruhoy near Seattle children's is DD neurologist. Her pandas doc is from Vital Kids just around the corner . 

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4Nikki I am trying to get IVIG approved through our health insurance. The first step was to have our Pediatrician write a letter with specific information about why we needed treatment, which doctor we are going to In IL and why, and that it is a time sensitive issue. The insurance specialist was actually very helpful and told me what would be needed in terms of wording in the letter. I will send another letter of support from Dr. K in Illinois to Insurance, after we see him on the 16th. I can only imagine that we will have to appeal several times and send off some scientific literature to try to convince the insurance company to pay. 

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