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[Shacker]

Hi everyone,

I need help finding a doctor who will listen to my concerns regarding my son possibly dealing with PANDAS. I am in the Northern Virginia area.

My son has had numerous positive strep tests over the past 2 years or so. With each positive strep test, I have seen what I now think are flare-ups. My sons symptoms seem to be getting more debilitating with each re-infection of strep. His symptoms are extreme irritability, emotional lability, off and on vocal tics (light grunting or moaning), mild obsessive behaviors, long bouts of extreme hyperactivity, and signs of Oppositional Defiance Disorder. Some days I fear for his safety and others as he seems to have no control over his actions. He often yells that he does not care about anything he only cares about animals. This phrase is said regarding himself, his friends, his family and his safety. He has said things about killing himself and others (mostly me) which is terrifying coming from a 5 year old. I am really concerned, and I do not know where to go from here. Any recommendations would be greatly appreciated.

Edited June 3, 2018 by shacker

[bobh]

Virginia seems to be a hub of PANS/PANDAS patients - that is the impression I get from a couple of facebook groups.  So I would believe that there are a lot of people to talk to in Virginia, but I don't know about doctors.  You can check the list of docs at pandasnetwork.org for Virginia, or find some of these groups (google PRAIkids - the woman that runs it is in Virgina).  If you come up empty, reply back and I could probably find some contacts from within a group that I am in.

Edited June 5, 2018 by bobh

[bigmighty]

Carolyn Walsh MD in Leesburg VA - my son just turned 20 and she has been his internist/pandas 1st responder since he was 12.  

 

[MomWithOCDSon]

I believe Dr. Latimer is in the DC area and is well known for treating PANDAS.  Though I also know her practice is quite busy and you may have to wait a while to be seen.  Perhaps one of the preceding suggestions will be fruitful for you in the meantime, and you could also try the thread called "Doctors Who've Helped Us" among the Pinned Threads at the top of this PANDAS forum.

Should you find you're put in the position of waiting some time for an opening appointment with one of the truly PANDAS-literate doctors, I would try an appeal to his regular pediatrician who's hopefully known him for some time and can therefore maybe see that the kid who's in front of him now isn't the same kid he's typically seen in his practice?  In which case, getting a longer (30-day) prescription for an antibiotic which has been successful for combatting his strep in the past may cover the time gap until you can get in front of a truly knowledgeable provider.

Good luck!

[bigmighty]

When we attempted to get an appointment with Dr. Latimer, the assistant booked us an appointment 100 days out then instructed us to send a nonrefundable check for $1,000 to lock in the appointment.  No idea if that's still the protocol.

 

[Shacker]

Thank you everyone for your responses and recomendations. I am going to try and revisit with his pediatricians office now that I have a little more knowledge of PANDAS and more documented positive strep tests that correspond with his symptoms. I really appreciate the support!