More Recommendations?

[ibcdbwc]

Any new additions to the doc list - perhaps Duke Med/Raleigh area? Have researched the doc list and still looking - no good leads. Have used Dr. T by phone for several years - and have a good local psychiatrist, an ENT for ongoing sinus infections, an endocrinologist for subclinical hypothyroidism--- but I am looking for more PANS support to leave no stone unturned. We have never done IVIG. Our psych is willing to help with MTHFR status so that is cooking but...

 

With our ongoing physical symptoms (in addition to personality/OCD changes) including headache, joint pain, mild IgG subclass deficiencies - I'd like to have either a neuro or immuno on board too? Have been looking for LLMD as well but search has stalled. Dr. T tested via Western Blot: postive 23 band IgM (lyme specific) in 2011 with IgG of band 41. Did not meet CDC standards. In 2013 lyme "negative" - (did not do western blot) - and he tested for all co-infections showing "negative." Dr. T does not think lyme and neither do I -- rather it seems more chronic sinus insult, perhaps histamine related as well. He's also had flares with viral insults - parvo, coxsackie... Does anyone know of any good medical professionals in my area. Please feel free to PM please if so.

[cobbiemommy]

Have you talked to ENT about tonsillectomy? Our doc is past president of national association of otolaryngologists and a huge advocate for PANDAs patients. http://health.usnews.com/doctors/rodney-lusk-11203 If your doctor is in need of convincing, I feel confident that his office would talk to another physician and explain their rationale for treatment.

 

After a some bumpy spots, my DS is two months out from surgery and progressing very nicely.

Edited January 8, 2014 by cobbiemommy