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Referrals for San Jose CA area?


TiredMom
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Hello,

I am new to this forum and very happy to have found this community. I have felt very alone since last October when my dd suddenly presented with intense PANDAS symptoms. As tramatic as that was, it was just as shocking experiencing how hard it was to get her medical help. So few Doctors either know about or believe in PANDAS as a valid entity. I have had one disappointment after another including Stanford Children's Hospital. I was told by the pediatric neurology department that most drs don't believe PANDAS exists, and you can't make an appointment for unless your child has tics (mine does not). The psychiatry department told me there was a huge waiting list, and someone would call me back in 6 weeks! It was actually 5 MONTHS before they finally returned one of my calls for an appointment. I would be most grateful for any referrals anyone might help for any health care professional they believe has helped their PANDAS child in the San Jose/South Bay area. Thanks in advance. God bless all of you wonderful, strong, brave parents.

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Hi,

Unfortunately you may have to pay...We see Dr Mielke in Pleasanton, She is a DAN Dr and is expensive but she knows her stuff. She was very instrumental in getting my Kaiser pedi to do IVIG for me. He called her and she convinced him that yes my son had PANDAS and that Kaiser needed to treat it. Also she did alot of testing which I gave to Kaiser...HMO's are pretty clueless about alot of this..

Dr Mielke's website..www.developmentalspectrums.com

Good luck..Sarah

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Hi Peggy Sue,

 

I sent you a private message re. referrals.

 

Do you have a HMO? We do too...let me know if you need any help/hints re. getting your HMO to okay the psychiatrist I recommended...if that is the way you decide to go. (If you have a PPO I don't think there should be a problem, although I'm not an insurance expert!)

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  • 2 years later...

Hello- I am new to this forum as of last week and was browsing when I came across your post. I am from San Jose and have just found out from our Ped that my son has a probable case of PANDAS/PITANDS, I am wondering if you found help, as I see your post is older, and how things are. I am still wary as we meet with PANDA friendly nuerologist Sat. Has your daughter recovered? Barb Sackles

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hello peggy sue and sacklesb - welcome -

 

we are in the area as well. we decided after a year of trying to find local help and experts (cobbling them together ourselves) to go to Chicago to see Dr K for ivig. There is a new doctor in Petaluma that follows Dr K's protocol - and consults with Dr K on certain cases, that we are now working with, and is working with my nephew as well. his name is Dr. Sunjya K. Schweig MD wesite : http://hillparkmedicalcenter.com/practitioners/ he does ivig at his center, so should we need another we won't have to fly to chicago.

 

We did a phone consult with him and are doing some tests for lyme and a few others. Also, Dr Thienneman in Palo Alto, but she can only do so much, she is pychiatrist, and pandas usually requires immune work ups, bacterial investigations and testing, and lyme screening (and possibly testing) .

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Hi I am in Pleasanton,CA and relatively new to the board. My son is mid 20's w PANDAS OCD and TICs since age 14. Had IVIG at Stanford in 2000 and had allergic reaction, but no prep like prednisone or benadryl was given. Sees Psychiatrist is area. PM me if you want details. We went to Bethesda and saw Dr.L and had Cunningham's test Cam kinase 170 and all other tests from Cunningham elevated. So got PANDAS diagnosis. Had HD IVIG at military hospital in DC area. WEnt well and it was end SEpt 2010. Had bronchitis 2 weeks ago and that set him back. He is on Zith, motrin and meds ordered by psychiatrist. Hope to get him off psych. Meds. Right now he is 10% better. Was 20% better before bronchitis. His lows are not as low. Anxiety is better and he is sleeping better. Before IVIG in Sept prednisone burst helped. All other blood work neg. MRI and CAT scan neg. So before we saw Latimer had done all tests so ready for IVIG. Will try to get follow up at Travis Air Force b/c cannot find a doctor that will follow him in the area, so I know how you all feel. I highly rec. Cunningham's test b/c it is a big piece of the puzzle. My son will probably need IVIG two more times and b/c he has had PANDAS so long it may not work. Anyone who wants to start a support group in the area let me know.

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Hi All - We see Herb Schrier (psychiatrist) at Children's Hosp. in Oakland. He has rx'ed antiobiotics and has connected us with resources. Still looking for better local resources that are affordable or on insurance.

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Barb,

 

I'll be intersted in knowing how your appt. with the PANDAS friendly neurologist went. I'm also curious who he (or she) is! Please feel free to e-mail me or pm me if you don't want to disclose names/info. online.

 

Thanks!!

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