Help! Looking for young adult PANDAS/PANS doctor in Northern CA

[Calimom6]

My young adult son has been battling PANDAS/PANS for a little over a year and went downhill after IVig in January and is highly incapacitated. Desperate to find a neurologist and immunologist with PANDAS/PANS experience in the greater Sacramento area who treats adults. Any doctor recommendations would be greatly appreciated!! Thank you!!!

[boysrlove24]

My young adult son has been battling PANDAS/PANS for a little over a year and went downhill after IVig in January and is highly incapacitated. Desperate to find a neurologist and immunologist with PANDAS/PANS experience in the greater Sacramento area who treats adults. Any doctor recommendations would be greatly appreciated!! Thank you!!!

Have you looked into Amy Smith in the Bay Area? She's very good.

[Calimom6]

Thank you @boysrlove24. Yes I have actually. It is looking like he has some type of autoimmune encephalitis as well. We are waiting to get into UCSF MS/Neuroinflammation clinic. Fingers crossed he gets in. It's been a long road to find out what all is going on with him. Hoping he gets some relief soon! 

[tj21]

I hope so for you (relief soon)!

Our DS17 has same, we see Amy Smith, and also UCSF's Immunology/Rheumatology Dept., in conjunction w/CHO's Infectious Disease Dept.  Will ask UCSF Immunology about the MS/Neuroinflammation clinic in June when we go, though sounds like it's more for adults? 

[Calimom6]

Thank you @tj21. So sorry to hear your son has been battling both too. From their website-The UCSF Multiple Sclerosis Center is one of the premier centers in California for caring for patients with MS and other inflammatory diseases of the nervous system and is internationally renowned for providing high quality, patient-centered healthcare; for improving the quality, safety, and efficiency of that care; and for providing timely and appropriate access to neurological evaluation and treatment for people with multiple sclerosis, neuromyelitis optica, transverse myelitis, neurosarcoidosis, chronic meningitis, encephalitis and other neurological manifestations of systemic inflammatory or rheumatological diseases. We serve as an educational resource for physicians, patients, and their families, and conduct high-quality clinical and basic research that probes both the causes and potential cures for these illnesses. 

I don't think the MS Center is just for adults, but I would definitely ask. My DS21 has been battling this for 15 months and after IVig in January became mute, home-bound, stopped eating on his own and also started having tremors and dystonic type seizures on top of his other symptoms. It's been even more challenging to find doctors in my area that understand PANS due to my sons age and the mutism really has made treating him even much more difficult.

Has your son been dealing with this long? I'm interested in hearing about your experiences with the immunology department. I considered going that route, but wanted my son to see a neuro that specialized in Neuro immunology. I'm hoping this is the right avenue for my son.

[tj21]

@Calimom6 - Wow, they have so many departments. The Immunology Dept. seems so-so on how much they know about PANS and autoimmune encephalitis, though the rheumatologist there (Dr. Heshin) was very good and thoughtful. Mainly we ruled out other autoimmune issues that were possiblities. 

The mutism and dystonia especially are tough. I had a dystonic reaction once. Did your son have high dose (2g/1kg weight) IViG, or regular (less than 2g)? I've heard regular doses can trigger a worse PANDAS/PANS reaction b/c everything gets activated. 

I think my son was sick around age 7-8, and didn't get dx'd til 12. It may be too late to completely heal/reverse... so we're chipping away at as many symptoms as we can.

 

[Calimom6]

@tj21- That's interesting about the IVig dosing. I hadn't heard that before. My son had 1.75gm/kg. The infusion went well and he didn't experience any headaches. After the third and last dose, he was very tired and feel asleep for almost a day. When he woke up he stopped talking. 

I'm new to this site and I'm astounded by the amount of kids dealing with all these issues with so few doctors who know about all this. My son has been to the ER many times with no relief and doctors  wanting to push the psych route. It's so sad how many nurses/doctors I've had to explain about PANDAS/PANS to.  Looking back, I think my son started having problems late high school and then a mycoplasma infection (and possibly others) triggered the PANS a few years later. He literally changed overnight last Feb from normal to having tics/OCD and involuntary movements. I too worry about lasting effects since my son has been so severe for so long.

I'd love to hear if your son gets referred to the MS clinic.