PANS/PANDAS Dr. in SoCal?

[adp123]

Just starting down this path and despite most initial tests negative (including strep) for my 6 year old, PANS is literally the only thing that makes the last three and a half years make sense.  One month ago he started with a blinking tic that escalated to eye rolling and a head jerk.  At times, it would be constant, and other times wane.  It diminished SIGNIFICANTLY with ibuprofen.  During the same period, he has suddenly developed a long list of fears (which he's made me write down so we can shred them), but he was never afraid of anything before.  Separation anxiety through the roof, won't step on a crack on the sidewalk, etc.  But not all the time.  Verbal tics, compulsive logorrhea - literally, there are times he CANNOT stop talking, disinhibition, shutting down, fight or flight in a heartbeat, etc.  He had Flu in february, and then some sort of bacterial infection in his ear cartilage that doesn't seem to be fully resolved.  Nasal congestion that lasts for weeks at a time, etc.  I know we aren't alone.  Any help to find a dr who understands this and can look at the big picture of our whole child, and not just put a band aid on a symptom or stop a behavior, is much appreciated.  Some of the reviews of the docs listed are a little shady, so posting here for advice. We will go anywhere we have to go to get care for our child.

Thanks so much in advance...

[NYCMom]

If your current pediatrician is not open to exploring PANDAS, I would definitely start with someone on the list despite the reviews. Most neg reviews are about the timeliness of getting an appointment or getting a response to a concern or question. The most important thing is having a doc that believes in PANDAS, that cannot be overstated here.

If nothing else, start by getting the appropriate tests either from a PANDAS friendly doc or your current doc, pandasnetwork.org has a list of immunology tests that are a good start for most.

You can also try to convert your current pediatrician using the information on the pandasnetwork.org site. Some physicians are very open to the idea of PANDAS when presented with the wealth of medical research, which is only getting more and more robust as awareness increases.

[4Nikki]

Try dr Imbus in Pasadena, both farther and son are impressive human beings as well as neurologists. If it’s pathological, it doesn’t matter what the illness is or what it’s called, they will treat your child.

What worked for our DD was Advil cold and sinus. It’s behind the counter at the pharmacy. It has 200 mg ibuprofen and 30 mg pseudoephedrine. Separately they did not have the same affect but together the stopped the symptoms. Keep in mind it only helps with the symptoms not the cause. The Cunningham panel will give you a direction toward treatment.

[maren44]

hi, I just joined. My 10 year old daughter was just diagnosed with pandas and I am looking for a good doctor that is more pandas literate. My daughter had a strep and flu infection at the same time, and shortly after developed ocd  (germ contamination) she has always been a slightly anxious child (biting fingernails, etc. ) but  now things have progressed .She is an amazing artist and refuses to draw now, she refuses certain foods that she used to love . Everything revolves around fear of germs and getting sick. She has made great strides with behavior with CBT, and sleeps well, but we are concerned because last week she developed a tic where she repeatedly taps/rubs her forehead. We love in Southern California and would love to find a doctor that could treat her. Ihave called most on the Pandas network list and none take insurance . If anyone has ideas or suggestions, we are open to several different avenues (naturopath, western, etc)

[4Nikki]

Hi Mare44,

I’m in Washington now, but we found a very good primary care doctor Dr. Hau Bai in Chino Hills. She’s a pediatrician as well s microbiology scientist.  She Is smart enough to know we would have had lots of problems processing insurance and other services with a diagnosis of “pandas” What she diagnosed was “unknown autoimmune illness” with a referral from DD’s psychiatry doctor to UCLA, they did an assessment report. This got us everything covered under insurance. It also got us a case manager with regional social services. We tried three different pandas aware doctors but none took insurance. That was in 2012. So it appears not much has changed. We were going to head up to the Stanford clinic, but relocated to Washington state And found help at children’s hospital. I think another good place to start would be in children’s hospital Irvine. They have some good interrogative doctors that can rule out Lyme and the like which can cause many of the pandas like symptoms.

so I’m a little confused by your post. You have a diagnosis of “pandas” I assume this is a clinical diagnosis? Did they not suggest getting a Cunningham panel to confirm the diagnosis? Wouldn’t the doctor who made the diagnosis be the one to refer you to a specialist? They shouldn’t have just left you hanging with the diagnosis and have no idea how to treat the illness? 

Some suggestions: paper trails are prudent. Keep copies of all prescriptions, X-rays, scan and the like in chronological order. I made a detailed write up with DD’s complete case history kept electronic records of enerything. This helps with getting new doctors up to speed quickly. My wife made a daily journal. Tracking all medications, supplements, symptoms and behaviors. It is important to note, if possible, the pathological behavior symptoms and manipulative behaviors. This helps with the Physiatrists and social workers. If your daughters symptoms continue, you may end up going through a lot of doctors.

hth