need help in Maryland/DC--possible PANS

[MarylandMama]

Hi! I'm desperate for help and hoping someone here might be able to throw me a lifeline. My daughter had a terrible OCD overnight onset when she was about 4 years old. It was awful. We were on several waitlists for months for a therapist or psychiatrist. Her pediatrician did a strep and Lyme test at my request, both negative. Somehow, by the time the appointments for the psychiatrist and therapist rolled around, she was fine again. I am wracking my brain to try to remember if she got antibiotics for some kid illness during that time and can't remember. I've been on high alert ever since but all has been fine and she was a pretty well-adjusted kid, though a bit on the anxious side not interfering with life that much.

Until now--she's almost 9. It crept on a wee bit slower this time (more like a week or so) but then absolutely exploded in the last couple of days. It's constant obsessions, needing to confess constantly, telling me she was bed wetting, food restriction/fears of getting fat. I have the names of some CBT therapists that come highly recommended in my area but my gut tells me I need to look at PANS. She did have the flu just a few weeks ago. I have zero idea how to get PANS help in my area (Maryland/DC). Her pediatrician is great for most stuff but has no idea on this. I need help fast and have no idea where to look. I tried the PANDAS network list but there's one pediatrician, one psychiatrist and one psychologist in my area listed. I have zero idea what to do first. I don't want to waste one second and need to know how to get her the help she needs ASAP.

Can anyone please advise on how best to proceed?

[kakrpa]

See if you can get in for an initial consult with Dr. Trifiletti. Get some bloodwork done (check for mycoplasma, coxsackie, HHV6, EBV, etc). Keep us posted!

[Gpookie]

I'm in Annapolis. You can send me a private message.

[MarylandMama]

See if you can get in for an initial consult with Dr. Trifiletti. Get some bloodwork done (check for mycoplasma, coxsackie, HHV6, EBV, etc). Keep us posted!

 

Do you know if I can request this kind of bloodwork from my regular pediatrician somehow? I know there is the Cunningham panel that you can have your physician order but can these other tests be ordered through normal lab work? My pediatrician is very responsive and I'm sure would help but just isn't PANDAS aware. I was able to get a consult visit with a specialist but not until the end of May and it seems like time is of the essence to 1. capture what's going on right now in the midst of an acute episode and 2. have as much info as possible before showing up to a specialist so answers can come quicker.

[ejh]

We are in Maryland also and see Dr Latimer in DC. She is very knowledgeable. I think it is really portably to not just get a therapist/psychiatrist but to get any infections treated by a knowledgeable doctor.

[kakrpa]

If Dr Latimer is near you, then try to get in with her. If it will take awhile to get in, maybe ask her what tests your pediatrician can run until u meet with Dr L? AFAIK, the things I listed out can be run via a serum blood test (I went to a lab in town, with approval from Dr T).