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Monday, December 2, 2019

PANDAS: diagnosed 15 years after the fact

A young adult is struggling with PANDAS/PANS and much more.   He is 33 years old, I diagnosed him at age 29. I treated him briefly. We arranged a single dose of IVIG. The plan was long term therapy. He was directed to another physician who treated him with a single dose of IV rituximab. He got better – for a while but quickly regressed. 

He had a normal childhood – until he didn’t, excelling academically and in sports. But that changed overnight. One day normal the next the beginning of a nightmare that has never ended. Mom and dad wanted to know what happened to their son. He had become a different person, for no good reason, out of the blue. He became withdrawn, irritable and rageful. He developed tics, anxiety and OCD. Mom took him to his pediatrician who referred him to a psychiatrist. 

He was dosed with psychotropic meds which never made a difference. He refused to go to school.

Finding no alternative, his parents sent him off to boarding school for 2 years. He returned sullen, paranoid and angry.  He dropped out of school and worked odd jobs, never for more a few months. He wandered around, from on place to the next, from one relationship to the next. 

There were numerous suicide attempts and hospitalizations. He was given every psychiatric diagnosis in the book, schizoaffective to borderline personality to bipolar. He was prescribed every psychotropic: atypical antipsychotics, SSRIs, SNRIs, mood stabilizers, anticonvulsants and lithium. The diagnoses were wrong, and the medications never worked. 

He lives on the other side of the country and I have not seen him in years. I care for a family member who referred him to me because he suffers with Lyme disease and thought the patient might have the same. 

Our patient is a little better than he was the day I met him, but he is not a functional human being.  

He is uncontrollably enraged constantly mourning the life he has lost. He is so angry at his parents. Unfairly he blames them for the delayed diagnosis of PANDAS (15 years), and there is so much other water under the bridge.

He in fact has Strep related PANDAS and also tickborne disease picked up later which stoked the fire. 

The medical literature offers nothing in this case and other like it stating PANDAS is a pediatric illness. An NIH paper admits some young adults may be afflicted but it stops there.

Unfortunately, I suspect there are a lot of patients who have a similar story. PANS was not diagnosed in childhood. In adulthood they are diagnosed. What is there to do about it. And I do have other similar patients in my practice. 

Do doctors imagine that undiagnosed pediatric PANDAS cures itself in adulthood?  The problem is doctors who write papers are academics and don't see a lot of patients. They only see cohorts of carefully culled patients who meet study criteria. And they usually don't see those patients for long term follow up.

Patients are frequently diagnosed with Strep, Lyme, Bartonella and others.

Treatment, the right treatment can be prohibitively expensive. Tonsillectomy is recommended and may help.  Antibiotics are part of the treatment.  There may be psychiatric Herxheimer reactions. Steroids are “the poor man’s IVIG.” A therapeutic response to steroids is predictive of a positive response to IVIG.  IVIG is dosed high, 1.5-2 gm/kg every 3 weeks may be effective. Rituximab is a third line treatment. Some patients are managed with a combination of IVIG, Rituximab, steroids and antibiotics. Whatever works. 

These patients need a lot of supportive services and therapies. 

All of this new, largely opinion driven, because there is little research or science. The waters are uncharted because PANDAS wasn’t recognized until the late 1990s and tickborne PANS much later. There may be countless young adults suffering in much the same way. 

Naturally I think my approach is the most logical and effective given what we currently know. 

Treatment: tonsillectomy, antibiotics, steroids, IVIG, rituximab. Rituximab is not a substitute for IVIG, it is third tier therapy.  

Intensive therapy and psychotropic meds are going to be part of the picture. Psych drugs are not bad. It fact, they are incredibly helpful. It must be understood these meds are adjunctive, supportive and do not target the underlying cause of the illness. 


Susan said...

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Lisa said...

My son was diagnosed with PANDAS/PANS at 6 (2005). He had almost constant strep, ear and sinus infections - and as it turns out, was diagnosed with Common Variable Immune Deficiency at 9. Lyme (bartonella, babesiosis) diagnosis came at 10. Life was hell until he started higher dose (1.5gram per kilo) IVIG at 12. We worked with an Environmental Doctor and did immunotherapy focusing on neurotransmitters. We aggressively treated his tick infections and any infection, of course. Adding Lexapro to control OCD at 16 helped immensely. His NJ based Immunologist is enlightened enough to realize that PANS is real and managing the dosing of his IVIG can control it while still boosting his immune function. It's a balancing act, but he has stabilized and is getting A's in his 3rd yr at college. Was a nightmare, but we finally think he has turned a corner. We will always be vigilant not to move backwards.

Susanne Patzelt said...


I am interested in this too. I have been looking for this! I think there is a lot more to this, though.


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Christine said...

I am 63 years old and just discovered that I have PANDAS. Not officially diagnosed but I have come to this conclusion myself after lots of research. I am going to ask my psychiatrist about it when I see her next. I had scarlet fever when I was about 6 years old and my mom said that I changed overnight. I became quiet and withdrawn and began pulling out my hair. This was back in the mid 1960's so no one knew of this yet. I have suffered from depression most of my life. Two suicide attempts in the early 2000's. Years of psychiatric treatments and several different diagnosis and drugs that did little to help. At this point, I guess there is nothing that could be done to help is there?

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