Anyone have Kaiser So CA Dr for Pandas?

[Emiko]

We have Kaiser SoCa and I've been checking around Kaiser trying to find doctors who have been dealing with Pandas. Having a hard time finding one in the network. Pls PM me or send me email at emiko.smith76@gmail.com...thanks so much...

 

Emiko

[Sheila99]

We're just starting the PANDAs route. Had to go outside of Kaiser (to Dr Thomas Lin) to get more PANDAs expertise. He put DD9 on Zithromax for 30-days vs. Kaiser Dr who put DD9 on 5-day Zith, then 250mg 2x day Pen. Dr. Lin thought it was too soon to start using Pen when her ASO titers were so high. So grateful for his intervention, but out of pocket will become very expensive for ongoing consults, so had to look at my insurance, Kaiser network resources.

 

I was not happy with her Ped Dr (same one since birth); had to review all directory of network pediatricians in Kaiser system (see www.kp.org)and checked background (i.e. geographical, a plus in my eyes, if from back East-seems like more PANDAs there than West Coast), etc.

 

Found a new pediatrician (she just joined Kaiser SO Ca 2010), but went to school in Chicago and did internship/ residency at CHOC (Childrens Hospital of OC). Figured newer doctor, more progressive...being in Chicago maybe she's heard of Dr. K and PANDAs, etc. Plus experience at CHOC perhaps encountered PANDAs....I figured what's there to lose? The experienced current PED wasn't of much help as he's so skeptical strep caused DD's intrusive thoughts.

 

So far so good. Her name is Dr. Connie Lin (Harbor McArthur, Santa Ana), no relation to Dr. Thomas Lin. For now she is accepting patients...probably until she reaches certain patient load. She's checked with Infectious Disease Dr, and referred us other Kaiser doctors (Neurology, Psychiatry) to aid her and us in search of answers. At least I feel better in her hands than previous Ped, who was good since birth, but now, at this juncture, kinda need female perspective and proactive approach she's been taking...She's not a PANDAs expert (YET) so I can't say that she's got all the answers and if the more aggressive IVIG and PEX will be a route she will advocate.

 

I asked Kaiser Dr Lin to run tests for coinfections (i.e. mycoplasma and lyme); she checked w/ Infectious Disease Dr who said she's run across PANDAs with mycoplasma coinfection, but no lyme. So Kaiser Dr Lin testing for coinfection (mycoplasma) to determine how much longer to keep DD on Zith. If titers are lower, negative on mycoplasma and symptoms have abated, she will be switching DD9 back to Pen for long term so that DD doesnt develop resistance to Zith.

 

Thanks to the forum for giving me a lot of direction on everything we've done for DD so far.

 

Hope that helps, and hope this doesn't jinx us (YIKES!)

Edited July 25, 2011 by Sheila99

[SSS]

I'm in Northern CA, and we have Kaiser.

Don't mean to be a downer, but Kaiser was a horrific experience for us trying to get help with pandas- and I had a rock solid presentation, backed up with CamK testing, our DAN! Dr. willing to consult, timeline, etc.

They told me

1.) They do not 'believe' in pandas

2.) Would only prescribe antibiotics with a positive culture, and a short round.

 

You might have better luck in So. CA than I did in North CA.

I honest to God cannot bear them anymore, and we are switching the whole family, next opportunity.

[Sheila99]

Hi S&S Mom- I'm really hoping there's Kaiser doctors here in SoCA that are more open...the Neurologist we saw last week most definitely NOT on board this is PANDAs right now, since puberty is involved, so he needs more clinical evidence. But he says he has seen/treated kids w/ PANDAs, but he does not like to call it PANDAs. I will continue to consult with other neurologists. Never easy...always have to fight for everything...

[Emiko]

So discouraging about No CA Kaiser...nice info on SoCA but does not sound very encouraging...hopefully the Ped works out for you Sheila99.

 

Thanks, Emiko