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Hello,

New to this forum and desperately trying to find a PANDAS specialist in Southern California for our 13.5 yr old son with PANDAS. We really need someone who understands treatment and can be very proactive.

 

Our pediatrician was not well versed in treatment at all (and sadly Cedar Sinai can only test ASO titers to 800...they don't have the methodology to test higher so we have no idea of his initial score.

 

Last tested he was at 918. We found an integrative MD who was willing to let us into her practice. She has helped with supplements, brain mapping (results: brain inflammation, wasn't getting REM sleep cycles, short term memory issues, anxiety... the neurofeedback helping calm some of the OCD issues and helping with focus issues and now sleeps and dreams (so REM sleep is finally back, although does have nightmares occasionally). She has him on 75mg of Lamictal and other supplements for anxiety. She won't try prednisone...wants us to find a specialist since PANDAS isn't her expertise since he is still suffering. He had Periodic Fever Syndrome as a Toddler (tonsils and adenoids removed at age 3.5), history of continued strep. Last pathogen was strep in sinus cavity...been strep free since mid may.

 

Curious if there are any Doctors near Los Angeles or if any of the Doctors in Orange County are experts in treating kids with PANDAS. I will travel anywhere in California if need be to find the help for our son. Any suggestions or reviews would be most appreciated:-)

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Your child's Periodic Fever Syndrome as a toddler has me concerned there are other potential infections involved. Many of us found that although strep was an obvious trigger there were other underlying infections or viruses. Borrelia Miyamotoi is the more predominate TBI (tick born infection) in CA and is not testable via any standard Lyme test.

 

Borrelia Miyamoti is also known to cause relapsing fevers. Here is a little blurb and you can google Borrelia Migamotoi Relapsing Fever for more references.

 

Borrelia miyamotoi is a relapsing fever Borrelia group spirochete that is transmitted by the same hard-bodied (ixodid) tick species that transmit the agents of Lyme disease.

 

Tick Study in CA: http://www.bayarealyme.org/about-lyme/what-causes-lyme-disease/borrelia-miyamotoi/

 

http://www.cdc.gov/ticks/miyamotoi.html

 

I would highly recommend seeing an LLMD (Lyme Literate Dr.) that understands PANS/PANDAS to investigate further for your son. We have wonderful LLMDs in Northern CA that are very well versed in PANS and/or PANDAS if you are willing to travel. Please PM via the forum for referrals.

 

Does your child have a known tick bite at any point in his life?

Edited by sf_mom

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Your child's Periodic Fever Syndrome as a toddler has me concerned there are other potential infections involved. Many of us found that although strep was an obvious trigger there were other underlying infections or viruses. Borrelia Miyamotoi is the more predominate TBI (tick born infection) in CA and is not testable via any standard Lyme test.

 

Borrelia Miyamoti is also known to cause relapsing fevers. Here is a little blurb and you can google Borrelia Migamotoi Relapsing Fever for more references.

 

Borrelia miyamotoi is a relapsing fever Borrelia group spirochete that is transmitted by the same hard-bodied (ixodid) tick species that transmit the agents of Lyme disease.

 

Tick Study in CA: http://www.bayarealyme.org/about-lyme/what-causes-lyme-disease/borrelia-miyamotoi/

 

http://www.cdc.gov/ticks/miyamotoi.html

 

I would highly recommend seeing an LLMD (Lyme Literate Dr.) that understands PANS/PANDAS to investigate further for your son. We have wonderful LLMDs in Northern CA that are very well versed in PANS and/or PANDAS if you are willing to travel. Please PM via the forum for referrals.

 

Does your child have a known tick bite at any point in his life?

Thank you! I'm so new, that I don't know how to private message. Just did a full battery of tests (largest yet). He tested negative for lyme (and never had a tick bite that we know of). His titers now at 786 (was higher) and antiD was positive. He is in week two of steroid taper...very rough first week! Showing huge transformation in behavior thankfully (also weaning of lamictal and just started low 1mg does of ambilify, so not sure if that is helping as well...was so bad didn't want to spread out treatment) AND on Augmenting/Clav because I got strep last week from a co-worker so maybe it's the trifecta of medicines;-).

 

Now we are dealing with just mild OCD, still significant sensory (taste issues but hungrier from meds), night time separation anxiety, general anxiety, decline in math better but still there, just starting drawing again which is hopeful, adhd/short term memory still an issue, dilated pupils less often but still apparent even in broad daylight. Praying raging and major defiant/oppositional behavior is gone (again, as of yesterday). Just tested positive for staph infection in sinuses (on to new antibiotics starting today since staph is unresponsive to Aug/Clav, needs Cephalexin, poor boy!). Anyway...any suggestions for PANDAS/PANS MD in Northern Cali would be awesome. We live in L.A. so if there are any other members who can suggest someone closer that would be great too. Thank you so much!

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If your child has Myamotoi Borrelia it would NOT have come up positive on standard Lyme test. It has different proteins and not testable at this time. Borrelia Spirochetes can be sexually transmitted and also passed from mother to child in-utero.

 

We have 3 children with gestational Lyme et al PANS/PANDAS/Autism.

 

I PM'd you a list of Dr.'s. One is located in Santa Barbara for you plus some really good Dr.'s/NP's in Bay Area. 2 of the NPs listed have children with PANS/PANDAS. Look in upper right hand corner for PM message.

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Hello,

New to this forum and desperately trying to find a PANDAS specialist in Southern California for our 13.5 yr old son with PANDAS. We really need someone who understands treatment and can be very proactive.

 

Our pediatrician was not well versed in treatment at all (and sadly Cedar Sinai can only test ASO titers to 800...they don't have the methodology to test higher so we have no idea of his initial score.

 

Last tested he was at 918. We found an integrative MD who was willing to let us into her practice. She has helped with supplements, brain mapping (results: brain inflammation, wasn't getting REM sleep cycles, short term memory issues, anxiety... the neurofeedback helping calm some of the OCD issues and helping with focus issues and now sleeps and dreams (so REM sleep is finally back, although does have nightmares occasionally). She has him on 75mg of Lamictal and other supplements for anxiety. She won't try prednisone...wants us to find a specialist since PANDAS isn't her expertise since he is still suffering. He had Periodic Fever Syndrome as a Toddler (tonsils and adenoids removed at age 3.5), history of continued strep. Last pathogen was strep in sinus cavity...been strep free since mid may.

 

Curious if there are any Doctors near Los Angeles or if any of the Doctors in Orange County are experts in treating kids with PANDAS. I will travel anywhere in California if need be to find the help for our son. Any suggestions or reviews would be most appreciated:-)

Did you receive a recommendation for a PANDAS doc in Orange County? I live in OC as well and have a good integrative medicine doctor that we have been using. My DS has also been diagnosed with Lyme so now I'm spreading out to an LLMD but up to now I've been happy with our integrative medicine doctor - she is very thorough and caring. Let me know if you'd like a referral and I'll private message you.

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Thank you...Always good to have the name of a great integrative Dr:-), please Pm me. We did find one of the Northern California Dr's had moved to a practice in Temecula, so we have been seeing Dr. R (assuming forums don't allow us to say full names).

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Thank you...Always good to have the name of a great integrative Dr:-), please Pm me. We did find one of the Northern California Dr's had moved to a practice in Temecula, so we have been seeing Dr. R (assuming forums don't allow us to say full names).

I PM'd you with some info...

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Would love the same referral please for a Pans/Pandas doctor in Southern California who also is LLMD. Need a specialist in busting biofilms, Would love to find eastern or western approach at this point. Thank you!

 

I PM'd you with some info...

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Dr. Imbus in Pasadena both father and son are excellent neurologists. They are not pandas Dr. But they wont quit on you son like many Dr. would when the diagnosis is elusive. I'm sure if we were still in Southern California they would still be looking after the health of our dd. The plus with these two is they has expertise in areas pandas Dr. Don't.

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ALSO NEED SO. CAL DOCTOR:  We are brand new to the PANS or PANDAS idea and are looking for a PANS or PANDAS dr. in So. Cal.  My daughter had acute onset symptoms of anxiety, OCD and ODD (which we didn't immediately identify) two years ago at age 14.  She went into screaming rages, insisted on sleeping with us in our room, didn't want to ever be alone, and had extreme behaviors incl. jumping out of a moving car. We thought it was extreme teen rebellious behavior.  We started w/ CBT and In the chance that something neurological was going on, and that it was possibly food related, we instituted the Feingold diet which removes all artificial colors, artificial flavors, and artificial preservatives (primarily BHT, TBHQ, and BHA).  It also decreases the amount of salicylates taken in from whole foods.  We also found that she reacted strongly food high in oxalates. The CBT and dietary changes have helped esp. w/ the ODD but she's still struggling w/ focus and OCD behaviors.  We really need to get to the bottom of this if possible.  It's crippled her high school path completely.  We're looking into Dr. K in Irvine, but I'd like to know if there are any others.  PM is fine. Thank you for any suggestions.

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My 10 yr old son was diagnosed with PANS by an integrative medicine doctor by the name of Mae Kinaly in Irivine, CA. We live in Manhattan Beach in LA county. She did a ton of blood work, in depth history and immediately started him on azithromycin and supplements. She is a little kooky but I feel is a very in depth doctor with my son's best interests at heart. She does offer IVIG. We also went to Dr. Miroslav Kovacevic in Chiago for a second opinion and ultimately IVIG. Hope that helps.

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