Marin, CA or SF PANDAS practitioners?

[packjen]

Hello All,

I am a new member and the mother of a 14-year-old girl who has PANDAS. She had strep 4 times the winter she was six years old and immediately exhibited symptoms of PANDAS (excessive urination and then obsessive hand washing). We dealt with that for months and then the symptoms went away when we threw the whole family in the van and spent the summer camping around the country. Not many opportunities to wash your hands compulsively when you have no access to running water!

At the time I did research and sent info to her Kaiser pediatrician about PANDAS and he basically said "it's not a real diagnosis". He said "we treat the strep and then treat the OCD separately" and never shall the two meet.

Fast forward to 8 years later, this April, when she got strep again. Within a week to 10 days she was in full blown OCD with washing, checking, severe fear of infestation by lice and contamination, angry outbursts, and more. I tried to get her good psych help with Kaiser and it was ridiculous -- therapists inexperienced with OCD, a therapist who did a half-hearted attempt at CBT, 3 week wait to even get an appt for we parents to talk with the therapist. It was not helping and my daughter was suffering. So we went out of network and are paying out of pocket for an OCD-experienced psychologist to see her twice per week and do intensive CBT.

After reading much on this board and Pandasppn.org, I want to get my daughter on a course of antibiotics. I wrote again to her Kaiser pediatrician (who is out of the office for a week) basically begging to try this therapy and referring him to the Pandasppn.org website. What I got was this response from a different ped who was covering:

"PANS/PANDA is indeed still not well enough understood to have a scientifically sufficiently proven therapy. You can certainly write Dr. Dow another email and I will leave it in his inbox till his return. But I am fairly certain that his position is not different from the rest of the pediatricians in our department and that he would not prescribe antibiotics in this circumstance. That is not to say that a given person may not have a dramatic positive change after a non-standard treatment. It's simply that we cannot endorse treatments that are not the standard of care and have not been scientifically sufficiently proven. That would be more for careful research studies.

I am sorry to write the above, I am sure that's not what you wanted to here"

I am not holding out hope that her regular ped will break ranks and prescribe antibiotics. I need to know how to go about finding a doctor in the SF/Marin, CA area who is open to trying this therapy. Please let me know what you all have done to get your children treated.

We are not in one of the four counties served by Stanford PANDAS clinic.

Thank you in advance for sharing your wisdom. Jennifer

[momonmission]

Hi packjen, I am new here too after just recently connecting the dots to my 8 y/o son's symptoms. I felt compelled to respond to your post because I am dealing with the same issues with Kaiser peds too and I'm in Atlanta, GA- even after sending them information from NIMH. My son like your daughter had multiple strep infections, scarlett fever, staph infection, Hand Foot Mouth (coxsackie) and started exhibiting odd behaviors- all before age 4. Like I said earlier I just connected to dots recently after and have been seeking help- at 8 his ADHD, tics and OCD are quite severe now. A ped at Kaiser saw him in full action tic'ing- hitting himself in the head, constant leg kicking and finger movements and still said "they don't believe in PANS. A dev ped at Kaiser refused to accept PANS and diagnosed him with ADHD, Global Developmental Delay, Expressive, Receptive Language Disorder. The most ridiculous piece is that when I took my son for the eval- he was in what I now know was a flare and was tic'ing (weird finger movements) and the dev ped asked "what is he doing"?. Seriously, you don't know and you're the professional!! But still wouldn't accept PANS.

 

Anyway, we gave up on Kaiser and sought holistic doctors that have helped tremendously. We saw a practitioner that does kinesiology and Neurolink- who found several strains of coxsackie, influenza/rotovirus (from vaccinations), and spiro virus -no idea where this came from- but all were contributing to his neurological issues. Also said his gut, liver, spleen were damaged. She's been treating all of the above homeopathically. We've seen vast improvements-especially with the tics.

 

We also see a naturopath who does biofeedback who confirmed he had gut, liver spleen (basically detoxification) issues. So we've added colostrum, a vaccination detox, oxygen. Eye contact, cognition, language has taken off.

Another naturopath that I consult with long distance, suggested BRAVO yogurt for complete gut reboot and a natural product called Protamdin. Some relief from ADHD behaviors but it's only been a month since we started. But I can for sure say that all of the above is working because my son has a persistent rash (20 days +) and all have confirmed it's the virus' leaving his system. Hence, all of the improvements so we are extremely hopeful and prayerful we will have a complete healing.

 

James Hopson- Inspiring Health can probably help you get started. He is in Los Angeles, CA -I'm not sure how far that is from you- but he consults long distance and is a huge support and extremely knowledgeable. You can check out his site. HIs number is 310-773-2323. He's extremely responsive and will answer any questions you have. I know he does biofeedback too so if you could get your daughter to him, he could probably pinpoint exactly what's causing her OCD. BTW, he treats a friends son and they live in Ugunda! Her son is experiencing gains too!

 

Sorry for such a long response, but I hope I was able to help you find some relief/hope. Hang in there!

[tj21]

That is so frustrating to hear about Kaiser and your MDs response.

 

Check out http://www.amyjoysmithnp.com/, who practices in Redwood City, CA. She just presented again at the PANDAS Conference at Georgetown in DC. She has been treating ds17 for about 4 yrs. now. We've been fortunate that most of our other MDs have not dismissed PANS/PANDAS, and have even said "I've seen a few cases" (not treated any though). From what I hear it's difficult to get into Stanford for actual treatment, anyway.

 

After our initial consult and occasional office visits, we've been able to do phone consults (not covered by ins. but you're going out-of-network anyway) which is better than driving south and waiting.

 

Also, http://www.drschweig.com/ might be of help, he's in Berkeley, CA.

 

Feel free to PM me as well. Good luck.

Edited October 19, 2016 by tj21