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ANYONE KNOW OF A PHYSICIAN IN CALIFORNIA WHO KNOWS PANDAS?


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We are in southern California. My kids were diagnosed by Dr. Gerald Greene at Beaver Medical in Highland, despite low ASO titers, and I know that he has diagnosed others. He actually diagnosed ds6 the very day we came in with sudden onset OCD. One of the first things he asked that day was whether he had recently had an infection. He is a "believer" and has prescribed courses (many) of antibiotics for infections associated with PANDAS symptoms and for prophylaxis for dental work, but to date, has not been completely comfortable with managing longer-term treatment, particularly in kids who also have immunity problems and negative ASO. It's not that he doesn't think it's a good idea; he just doesn't have the expertise to know exactly what's needed and he doesn't want to make a mistake. However, he has agreed to work with Dr. B. on the phone to prescribe what he directs and has expressed that he is willing to prescribe and to oversee IVIG at Beaver's IVIG infusion center if one of the experts recommends it and the insurance approves it.

 

We are only at the stage now where the two docs are supposed to be working together on the phone (I haven't heard the outcome yet), but if that geographic area works for you, I can keep you posted on how it's going.

 

We love him as a pediatrician overall - he's very thorough and receptive, open-minded, and good with the kids, and he'll spend the time to really study the test results etc. It's hard to get a same-day appointment, but we can always get a same-week appointment and his nurses will always pick up the phone to address concerns or questions quickly. Dr. Goyne, his partner, is also great and quick to cover if Dr. Greene is out. The practice also has a 24-hour nurse line for round the clock support.

 

 

Hello,

 

I am trying to find a provider for my probable PANDAS son. Anyone know a doc in CA?

 

Northern or Southern?

 

 

I am looking for one in southern part.

Thank you

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Wish I could tell you of one. We live in Los Angeles and had to travel to the east coast to see Dr. T. Dr. Gupta in Irvine is an immunologist who does believe in PANDAS, but he is limited to the immune stuff and while he does do IVIG (very expensive at his clinic) he does not know much about the abx. I know of at least one mom who really was not crazy about him either. Another who really likes him...go figure!

 

Dr. T has spoken about making a trip here at some point in the not too distant future. I have to admit that while I was really glad to meet a doctor, who is a specialist in PANDAS, in person who could talk with me and examine my boys, the in person with the boys part was not really so necessary. The conversation could easily have been over the phone.

 

Wish I could be more helpful.

 

Where are you in Southern Cal? We are actually in Calabasas in LA county.

 

Best, Kari

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Wish I could tell you of one. We live in Los Angeles and had to travel to the east coast to see Dr. T. Dr. Gupta in Irvine is an immunologist who does believe in PANDAS, but he is limited to the immune stuff and while he does do IVIG (very expensive at his clinic) he does not know much about the abx. I know of at least one mom who really was not crazy about him either. Another who really likes him...go figure!

 

Dr. T has spoken about making a trip here at some point in the not too distant future. I have to admit that while I was really glad to meet a doctor, who is a specialist in PANDAS, in person who could talk with me and examine my boys, the in person with the boys part was not really so necessary. The conversation could easily have been over the phone.

 

Wish I could be more helpful.

 

Where are you in Southern Cal? We are actually in Calabasas in LA county.

 

Best, Kari

I live in Diamond Bar, California.

I just canceled appt with this Dr. in Burbank for she does not do antibiotics or IVIG but with natural supplements

Since my son is 16 yrs old and been through all that already, I would like someone with more aggressive approach.

I would like to know more about Dr. T?

Thank you

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Dr. T has spoken about making a trip here at some point in the not too distant future. I have to admit that while I was really

Best, Kari

I live in Diamond Bar, California.

I just canceled appt with this Dr. in Burbank for she does not do antibiotics or IVIG but with natural supplements

Since my son is 16 yrs old and been through all that already, I would like someone with more aggressive approach.

I would like to know more about Dr. T?

Thank you

 

Funny, I made an appointment with the same woman in Burbank (or at least I am guessing it is the same person). I canceled for the same reasons. Never did meet her.

 

Info on Dr. T can be found at www.pandas.yuku.com

 

I will PM you with my phone number and would be happy to answer any questions you have to the best of my ability.

 

Kari

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Hi,

Im in Palos Verdes. Have a phone consult with Dr. K. but don't know where that'll get us.

 

 

Please share your experience with us. I am a little skeptical about this phone consultation myself but if it is only way it would be with us being here in California, so be it. I am thinking of going with Dr. T as he might come out California sometime soon and I am familiar with NJ if I have to make that trip.

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Is Dr. T licensed to practice in CA? He can't legally do too much without CA license. I would go to Dr. K as I have family in WI. I don't know how I'll manage- can't afford plane tickets let alone treatment if IVIg. How many are getting insurance to cover? We have Anthem Blue Cross- notorious for not paying on stuff. Just finished a one year battle to have my son's lab tests paid for!!

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  • 5 weeks later...

Seems every one fighting to find some one here in So Cal . I am in mission viejo but no one to go to other then my family doc who helps us with antibiotics. One child neurologist ( Georgia Prentice , mission viejo ) had put us on PANDAS path 3 yrs back but she had a limited knowledge 3 years back. I plan to go to her again on next Tuesday so will update.

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Seems every one fighting to find some one here in So Cal . I am in mission viejo but no one to go to other then my family doc who helps us with antibiotics. One child neurologist ( Georgia Prentice , mission viejo ) had put us on PANDAS path 3 yrs back but she had a limited knowledge 3 years back. I plan to go to her again on next Tuesday so will update.

 

Ghostrider

 

I thought you were seeing Dr Gupta in UC Irvine for further help?

Did you see him already but was not helpful?

Update information on Dr Gupta, please.

from Diamond Bar

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I do not live in California, but I think we are all struggling with the same challenges of finding a doc who is a PANDAS expert who can make reasonable assessment of our kids and give us direction. I've done a phone consult with one doc and will now be traveling to visit another doc. Whether you do a phone consult or travel I highly recommend getting a copy of every medical record and organizing it before you speak to the doc. I used an excel spreadsheet that the doc sent ahead of time and it made our conversation go very smoothly because we could both see the same info. while we were talking. The phone consult was EXCELLENT and really helped to educate my husband and me.

 

Check with your local pharmacy and blood draw center about regulations from out of state docs. They may not need to be in -State for routine drugs and bloodwork. You also need to make sure your insurance will cover it if it is ordered from an out of network doctor (my insurance did not cover the cost of the consultation, but does cover any blood work or medication recommended).

 

That being said, having a phone consult or a visit with a doc is not the same as having a local doc who can see your child, do a physical assessment on a regular basis, and help you to make decisions.

 

You might want to look for a doctor that is at least PANDAS friendly even if not a PANDAS expert. I just recently found a local doc who is an MD and a family practitioner (does all ages), who also offers acupuncture and low dose allergy treatments and other eastern medicine in his office (though he does not actually do the acupuncture or allergy treatments). I thought he sounded open minded enough to at least listen to me. He is probably the closest thing to a DAN doc around here, but he treats all ages. I set up a consult with him and went in without my son. I went armed with some of Buster's info (thanks again Buster) and some of the most pertinent medical history notes form my son and I told him my story. He had never heard of PANDAS, but said he was interested in learning more and was supportive. He is very willing to work with the recommendations of the PANDAS Docs that we are consulting with. He sees my son for the first time in a couple of weeks, but who knows - maybe I'll be adding his name to the PANDAS list eventually!

 

Best of luck as you work your way through this. If you want more details you can PM me.

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I just noticed a psychologist from CA on the medical advisory board for the PANDAS resource network

 

Dr. Pamela Varady

Clinical Psychologist

Family Therapy/Family Skills Therapy

Santa Monica, CA

www.askdrvarady.com

www.learn2listen.com

 

Perhaps she could direct your toward a medical doctor who is PANDAS friendly in CA.

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