Frustrating Visit!

[nicklemama]

My experience had taught me not to expect anything from medical providers. It saves me frustration. DS sees a PANDAS expert and that's where you'll probably find the most help. DS saw an allergist last week. He knew nothing about PANDAS and that's ok. I didn't go there for PANDAS treatment. He did annoy me by telling me it was extremely rare, but that day wasn't the day for me to school him. DS saw many, many medical professionals before diagnosis and NONE but Dr T and Dr K have had any clue about PANDAS. Save yourself the frustration.

[missionmom]

Near SF CA, any suggestions?

 

Here's from the helpful doc list (I added some edits and comments):

Dr. Brock Bernsten

3838 California St.

San Francisco, CA

Phone: (415) 666-1860

 

Our Pediatrician, was willing to listen and support whatever recommendations immunologist made including open IVIG order if required. Willing to do additional research but not very familiar with PANDAS

 

 

Frederick A. Lloyd, M.D.

Palo Alto Center

795 El Camino Real

Palo Alto, California 94301

Phone: (650) 853-2992

 

Has several PANDAs patients, knows Margo Thienemann, listens well, responsive, will provide antibiotics in conjunction with other Dr. recommendation, open to IVIG prescription if recommended by another Dr.

 

 

Sean McGhee

Pediatric Immun. & Infectious Disease

300 Pasteur Dr

CCSR 2115B

Stanford, CA 94305-5164

(650) 498-4189

 

 

Margo Thienemann MD

900 Welch Road

Suite 207

Palo Alto CA 94304

Phone mail: 650 324 3241

 

Dr. Thienemann (child psychiatrist) is one of the docs who was involved on the PANS paper. She has many PANDAS patients. She's our main "pandas doc". We've had IVIG through Dr. McGhee. If you are already diagnosed through Dr. Theinmann that is helpful.

 

I would also recommend contacting SFMom...she may have additional recommendations. I know she sees a Lyme doc who does a really good job of looking for infectious triggers.

 

Also, AmyJoy is North of SF, she's in the medical field....I believe she works at a place where they can do IVIGs.

 

Also, contact Diana Pohlman at PANDASnetwork.org --she is Bay Area and may have additional recommendations.

Many thanks. Have already been turned away by some of these as DS is not a child, but we'll keep plugging away.