Can PAN/PANDAS occur in adults?

Apparently, it can.

UPDATE ON CHRIS

My son Chris, who is 37, recently learned that he has Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). He was 20 when he was diagnosed with schizophrenia. Schizophrenia is typically diagnosed in males between the ages of 15 and 25 and in females between 25 and 35, with the incidence seemingly higher in men. It is diagnosed by observation only (a doctor’s opinion), not through blood tests. Its prevalence has remained stubbornly steady over the years and in all countries around the world at around 1 in 100 people.

As publisher of this blog, Holistic Recovery from Schizophrenia: A Mother and Son Journey, trust me when I say that many of the other mothers who have corresponded with me over the years said that their sons had roughly the same experience as my son. They were “normal” until late high school or part way through university. Most had healthy, uneventful childhoods –occasionally a mother thought she could pin down the start of the problem to a headache or a flu when her child was in his late teens or early twenties. My son’s last year of high school was marked by deteriorating school work and increasingly odd behavior. Through recent experience and in hindsight, I recognize how closely his symptoms resemble PANDAS.

PANDAS was not on my radar in 2003, the year Chris dropped out of university, and, to be honest, what little I read later about PANDAS I dismissed because he didn’t appear to be its poster child, emphasis on CHILD. He didn’t have problems in school as a youngster, there was no overnight onset of anything, he didn’t exhibit OCD-like behavior, and to the best of my knowledge, he never had a strep infection. Although he was indeed an adolescent when his problems started, his days of seeing a pediatrician pretty much ended with his series of early childhood vaccinations. I simply did not identify my six foot tall teenager with a neurological illness popularly associated with elementary age school children. 

My son’s motor tics (a symptom of PANDAS) are a relatively recent addition to his colorful palette of symptoms; they didn’t begin until he was 30. I learned about three years ago that motor tics are associated with OCD. I had never considered that possibility. Now I see it.

I was convinced that the long term use of medications caused this distressing new development. The tics would wax and wane; the antidepressant introduced to defeat them seemed to work only in the beginning. Here’s the thing about the medications used to treat the symptoms: They soon become the great confounder —is the weird behavior due to the underlying condition or the drugs?

I kept up with the latest theories, becoming quite the informal expert on schizophrenia without being able to find the key that would unlock its mysteries and heal my son. News of the growing research on the link between schizophrenia and the autoimmune system occasionally found its way into my blog in its final years. I guarantee you, during that time you would not have found PANDAS in the blog’s search engine.

In 2018 I retired this blog, having run out of “good ideas”; nothing in the medical world was pointing to anything that would change my son’s life for the better, let alone quickly.  The relatively recent focus on the autoimmune system was too much of a far off promise to result in immediate help for him. We both retired to Florida.

Shortly before moving to Florida, I published The Scenic Route: A Way through Madness. In my memoir  I detailed every little thing about my son’s pediatric health that I thought might be a clue as to how he ended up being diagnosed with schizophrenia. I began to think that recent research into a possible link between autoimmune disorders and schizophrenia had some merit, so to help publicize the book, I approached Susanna Cahalan, author of Brain on Fire: My Year of Madness, to write a blurb. She graciously accepted. Ms Cahalan, you may recall, was twenty something when she was diagnosed with anti-NMDA receptor autoimmune encephalitis, discovered by Dr. Joseph Dalmau in 2007. Apart from the dramatic seizures that landed her in the hospital, the symptoms she describes in her book sound an awful lot like schizophrenia, She had the immense good fortune that her parents insisted to her doctors that she did not have schizophrenia, she had something else!  She was in the right place, at the right time, with the right parents.

I didn’t stop with Susanna Cahalan. After the book was published I sent copies of The Scenic Route to a well-known British expert in autoimmune and psychiatric conditions and to a well known integrative doctor in the United States, asking them if any symptom described in my book rang a bell with them as being autoimmune related. None did, apparently. I find that strange given the fact that a possible link between schizophrenia and the autoimmune system was already creating a bit of stir. The reason for their lack of interest, I believe, is that doctors and researchers work in silos. None talk to each other, and memoirs written by mothers like me are not on their bedside reading table. (More of these books should be. In my opinion it is parents’ banding together who are forcing the experts to climb out of their silos and talk to each other.) 

How, then, at the advanced age of 37, did my son end up being told by a functional medicine doctor, via a Zoom call, “you’re on fire, man!” What changed? 

Despite my being wary of theories and therapies that purported to help (to be clear, many interventions did, just not enough), I decided to give it one more try. The functional medicine doctor prescribed a battery of blood, urine, and saliva tests because he strongly suspected that my son has PANDAS. One of the test results revealed ASO antibodies at the very high end (220) of the optimal range (= 200 or below), indicating an active streptococcal infection that has neurological features. The doctor commented that normal test results are closer to zero even if a person has had a previous strep infection in their life. A second test revealed elevated blood brain barrier proteins (HHV-6)  at ten times the normal level which demonstrated the presence of an opportunistic infection that can creep in when there is already a bacterial infection affecting the neurology of the brain.  As the doctor explained, HHV-6 is a type of virus only seen because a brain has been weakened.

I can say with the confidence born of lived experience that arguably, my son meets all of the 23 symptoms on the PANS rating scale. I’ve no idea if the course of treatment that the doctor prescribes will help my son.

If, in fact, the functional medicine doctor in correct and that there is relief for his symptoms and the chance that he can eventually resume a normal life, why does mainstream medicine still resist doing extensive blood testing when presented with a case of “schizophrenia.” 

See also https://en.wikipedia.org/wiki/PANDAS

9 thoughts on “Can PAN/PANDAS occur in adults?”

  1. This is amazing. I am so glad you posted. I have a son and a daughter who went into a sudden extreme OCD state in their teens for a couple of years. They both recovered from the extreme compulsive behavior (we did cognitive behavior therapy on our own after reading books, acupuncture and breathing/yoga type exercises) but both still complain about lingering social anxiety and contamination fears.

    I can say after reading your book that they shared some of the symptoms that Chris had – freezing before entering rooms, unable to sit, peeing in plastic bags instead of toilets, standing in one place despite freezing/raining weather, weird head pain, bad acne . . .

    I feel like these conditions – OCD, bipolar, schizophrenia – are perhaps just different expressions of the same underlying pathology. Maybe this pathology could be discovered if professionals came out of their silos as you say.

    1. I agree that the conditions you mention are all just manifestations of the same underlying pathology. Maybe, just maybe, it’s a compromised immune system. Maybe, just maybe, we are on the verge of something big happening in the world of “mental” illness.

  2. Dear Rossa,
    Thank you for reviving your blog. This news about Chris is fascinating and I fervently hope it leads to complete healing.

    The new “chapter” I should be writing is on PTSD associated with psychosis symptoms. It’s not quite schizophrenia, but anyone would be forgiven for thinking that it is. In the present domestic climate, I have not yet begun to pull my notes and observations together for an actual article.

    As you know, I have associated immune system problems with ear-related mental conditions since I read Alfred Tomatis’s description of the reciprocal involvement of the vagus nerve (network) in the action of the stapedius muscle in the middle ear. Your reader ML might like to know that underlying system has been identified by a citizen scientist.

    1. Hi, Laurna,
      I’m not getting too worked up over this latest finding, but I hope, as always for the best. Your research around the immune system, the ear, and mental disorders is tantalizing evidence, too, that maybe help is on the way. Here are some links to my past blog posts where you discuss this fascinating topic. Readers, take note!

      https://rossaforbes.com/?s=laurna+tallman

    2. I have been reading all about your Tallman Paradigm and think it may be a good fit for my situation. When you talk about a new “chapter” are you referring to experiences with your son or just how the method could assist those with PTSD?

  3. Thank you Rossa for this information.

    I had just recently decided to accept things the way they are. Perhaps God was waiting for my surrender & has chosen now to answer prayers.

    Between the ages of 4 & 6 my son had mild pneumonia, scarlet fever & strep throat. He also had vocal & motor tics around that age which I called OCD. So, even if this does not lead to recovery, I will ask to get him tested for PANS/PANDAS because otherwise I will always wonder.

    Best wishes to Chris for successful treatment & please keep us posted on the results.

    1. Hi, Mary,
      Please do get your son the right tests with the right doctors. He seems to fit the model. This is all so new. Let’s hope there is something to this. Best wishes to you and your son and keep us posted! I will update this blog from time to time on Chris’s progress.
      …R

  4. Hi Rossa,
    How r you ? Nice to hear from you after a real long time. All this is really new to me n confusing . There’s no sign of any improvement in my son Karan, sometimes he is very sweet n at times he gets agitated, at that time we just keep quiet n ignore him, then after a while when he calms down, he Apologizes to us, don’t know how to react n he refuses to go for any therapies, he came back from USA 3 yrs back but doesn’t take any interest in work. My husband is trying to keep him busy by teaching him about his share market work, he starts n then he drops out. He is very talented, loves to paint n we do encourage him to do that. Let’s hope for the best for all of us, plz do keep me posted from time to time on Chris’s progress.

    1. Hi, Sheela,
      It’s good to hear from you! Your son sounds typical of people diagnosed with schizophrenia, a lot like my son who has struggled over the years to manage processes that most people take for granted. Your care and understanding is vital.
      Warm regards,
      Rossa

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