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Has anyone tried the Stanford Clinic?


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Hi,

 

We've been there.

 

My dd was a prior Stanford (LPCH) patient (prior to existence of PANDAS clinic)

--hospitalized in 2008 (age 7) with PANDAS anorexia nervosa for 5 days (docs then were reluctant at the time b/c her throat looked "fine", but did do a throat swab and were surprised when she was positive)...we ended up following up our PANDAS treatment with Margo T. (psychiatrist who was with Stanford originally, now in private practice near Stanford).

--eventually got HD IVIG 3x (this was 2-3 years ago, when UHC covered IVIG for PANDAS) as an outpatient. 1st immunologist we saw (Lewis) okayed IVIG based on her Cunningham test (although he wasn't terribly interested in PANDAS he knew and respected Dr. Cunningham's work). He also checked for immune def (she didn't have it). We did IVIG #1, #2 through him. 2nd immunologist (McGhee, who was newer) was more PANDAS sympathetic (did IVIG #3 through him).

--also had echo (at least 2-3 years ago) there since out of state PANDAS doc recommended it due to high Cam Kinase ll (it was in the SC range)

 

We went to the PANDAS clinic (our long time psych Margo is involved in clinic so we got an appointment easily) in the fall. Our issues were flare from sleep away summer camp and residual OCD (we're at 80-90%). They repeated the immunology workup (since it had been a few years) and tested for some other things (mycoplasma, toxoplasmosis, celiac, vitamin D etc). They didn't test for viruses or any tick borne diseases. I asked re the viruses but they didn't want to do them (I didn't ask re the tick dz.) Labs were pretty normal except for high IgE (so we did allergy skin testing there...allergies to pollens etc). We agreed at the time we didn't want to do anything drastic with our dd (IVIG or T/A) since overall she was pretty good. We did try going gluten free (which failed). Oh, we also got titers drawn for Tetanus since we had taken the exemption for 7th grade shots (Dtap). (Our reg ped had originally refused to do titers and was annoyed we weren't vaccinating.) Rheumy agreed our dd was unlikely to get pertussis or diphtheria on Azith and agreed it made sense not to rock the boat with unneeded vaccines. She was more than happy to do tetanus titers (which were plenty high).

 

Long story short...I'd say it is a pretty good place for at least a start of a workup. My dd was already on long term abs, but I do know of a couple others that got rx for long term abs through them. If it is in network, and your insurance covers it, it would be a good place to do IVIG. Also, there are other specialists there (some more pandas friendly than others) if you need an echo or other tests.

 

That said, we're probably going to be going up to Hillpark (Petaluma) to see Dr. Schweig and/or Amy Smith (Integrative practice, highly recommended by PANDAS network.org). My understanding is that they will test for viruses, tick dz's (if appropriate) and other things that Stanford wouldn't (more involved food allergy testing etc). They are less mainstream, maybe a little more cutting edge for PANDAS kids?? Basically we are trying to figure out why we still have residual OCD. We also have a funky thing with high cholesterol going on which the rheumy at the Stanford thinks is from inflammation. She said she had seen others with autoimmune dz with high cholesterol which resolves when the autoimmune dz is treated.

 

NOTE! if there is possible Lyme (or co.) Stanford might not be the right place to go. I have a friend whose dd (she is not PANDAS, but reg Lyme symptoms fatigue, brain fog, pain) that was misdiagnosed there for 1.5 years. They (this is LPCH, not PANDAS clinic per se) disregarded her 5 positive bands on a standard Western Blot and positive erlichia and extensive camping history. They gave her a diagnosis of "post viral chronic fatigue syndrome" and refused to do more extensive lyme testing or testing for co infections or anything beyond 21 days of doxycycline (which they rx'd to humor the mom). I finally convinced parents to see Schweig who did a Lyme culture test (which positive), also positive for Babesia and mycoplasma...so now she is finally getting treatment.

I hope that helps! Let me know if you have other questions!


Edited by EAMom
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PS I agree about contacting PANDAS network.

 

Also, the clinic is new, so it may take a while to get in. I wouldn't put all my eggs in their basket. Keep Hillpark in mind as a resource as well.

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We live two miles from Stanford. I know many of the Dr.'s at Stanford clinic treating PANS personally. I am also familiar with many the other Dr.'s outside of Stanford Children's in the Bay Area treating PANs and their unique treatment strategies. You are welcome to PM me.

 

We are fortunate to have at least 10 great PANs Dr.'s in the Bay Area!

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EAMom: I concur!

 

I love Dr. S personally (he cares) but will add there is just as good if not better Dr.s closer than Petaluma in the Bay Area. Each have their unique specialty but all treating many PANS children. Happy to discuss via PM why the drive is truly not necessary.

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<<--also had echo (at least 2-3 years ago) there since out of state PANDAS doc recommended it due to high Cam Kinase ll (it was in the SC range)>>

 

What is the SC range, if you remember?

 

DS has very high Cam Kinase ii.

 

Thanks,

T.Anna

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Thanks you all for the responses.

 

Well... I contacted the clinic and they gave me a referral.

 

Turns out they aren't taking any new cases right now because the doctor is on maternity leave. They are forecasting to start again in the beginning of next year.

 

Was told they got overrun with inquiries from all over the states as soon as the clinic opened and had to turn away out of state patients.

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Dr. T recommended we try Stanford clinic for DS13 who needs PEX. I spoke with them yesterday and they will not be treating out of state patients when they do re-open. The referral is to a pyschiatrist who is on the list at PANDAS network.org.

 

Is anyone aware of any Dr's in the bay area that are open to PEX? We are in Western WA and we are willing to travel of course, but west coast would be so much easier on DS.

 

Thank you if you have any rec's.

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Dr. T recommended we try Stanford clinic for DS13 who needs PEX. I spoke with them yesterday and they will not be treating out of state patients when they do re-open. The referral is to a pyschiatrist who is on the list at PANDAS network.org.

 

Is anyone aware of any Dr's in the bay area that are open to PEX? We are in Western WA and we are willing to travel of course, but west coast would be so much easier on DS.

 

Thank you if you have any rec's.

 

I'm not sure what PEX is, I read this list on the pandasnetwork.org http://pandasnetwork.org/resources/providers/provider-list/#WASHINGTON there is on psychiatrist on the list, have your tried him?

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PEX is plasmapheresis - [from Wikipedia] The procedure is used to treat a variety of disorders, including those of the immune system, such as Goodpasture's syndrome,[2]myasthenia gravis,[3][4]Guillain-Barré syndrome, lupus, and thrombotic thrombocytopenic purpura.

 

It is also used with success to treat PANDAS, but it can be difficult to find physicians who will perform the procedure on these patients.

 

It was part of the cure used by Dr. N at NYU in the Book Brain on Fire by Susannah Cahalan.

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Hi Everyone, Originally joined Latitudes in Fall 10 when my son's odd symptoms started to blow up-but was concentrating on the tic end of things as thats where the Drs led us. Well here we are 3 full years later, neurologists, psychiatrists ENT, allergists, Gastros, CBT and we're worse off than ever. Been to UCSF where Dr Lowe didn't think that Nick's most disruptive symptom of randomly gagging and retching (no nausea or vomiting, though when it gets intense and frequent-like now- hard to eat. It comes and goes for no reason)) was a tic, even though Ped and one neurologist at Packard did??? Nick had a myriad of wacky symptoms and behaviors that 4 years ago didn't exist. One Dr says one thing and the "specialists" say another. Since I had lOTS of hours of desperation hunting for clues-our family life has been crushed by this, no travel, no get-togethers (we go seperately. Odd looks when people find out that we're still dealing with this. No school since middle of 6th grade-had to homechool since. Exhausting in a nutshell. Anyway, went to visit our PEd again by myself in May. She is stumped and needed some time to search out some resources but its been too long and I think shes given up. I really think Nick is dealing with PANDAS but I'm just his mom and I could use some help. I never thought we'd be on the cusp of High School still wearing the same shoes as in 6th grade. I have begun to reach back out on this site and through tthe PANDAS network to see if someone can help us find someone willing to do more than listen to our story and make guesses. Nick deserves so much more and the world needs him, he's been hanging in like a trooper and is my hero. Thanks for being here and walking this tough walk for families like us, Barb Sackles

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Barb,

 

There are some great Dr.'s in the Bay Area. Most of them are integrative and some have expertise in one area or the other but ALL understand PANS/PANDAS/TICS/OCD and are treating successfully. We too were initially referred to Dr. Lowe for movement disorder. We actually never met with him because our son was diagnosed with PANDAS in the interim. 4 year later and he no longer suffers from PANS but is still being treated for his chronic infections et al.

 

Here is the short list:

 

Dr. Lynn Mielke: Developemental Spectrums 'website not working for some reason' Pleasanton

 

Dr. Elisa Song: Whole Child Wellness - Belmont

 

Dr. Chandra: Whole Child Wellness - Belmont

 

Dr. Ray Patel: Redwood City - Located in same office suite as Dr. Harris.

 

Dr. Steven Harris (3 other Dr.'s in practice all integrative - NPs, you see Dr. Harris every other visit) - LLMD

 

Dr. Christina Green - LLMD - Los Altos

 

There are more but I would start with Dr. Lynn Mielke or Dr. Elisa Song (she might be closed to new patients). These particular Dr.'s will do the most extensive testing to investigate all the issues your son may have. If there are multiple chronic infections they both 'sometimes' prefer to work with Dr. Harris as well.

 

Dr. Sunjya Schweig - Petaluma

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I forgot to mention Dr. H has worked with a child that had chronic gagging and retching. It could be possible he has some type of infection in his esophagus. Gagging and retching can occur from esophageal yeast infections. BUT, from what I understand it can be other things beside yeast.... build up of white blood cells, viruses "CMV", etc.

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