Don’t miss out! Goodreads Book Giveaway
by Rossa Forbes
Giveaway ends March 31, 2022.
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 grades 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 school age 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/PANDAS rating scale. I’ve no idea if the course of treatment that the doctor prescribes will dramatically 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 blood testing when presented with a case of “schizophrenia”?
See also https://en.wikipedia.org/wiki/PANDAS
It’s been fifteen years since Chris was first hospitalized and more than that since he began to show symptoms of psychosis.
Today’s is my last post.
Thank you friends and readers for joining this blog and sticking with us. I started this blog in 2009, and recently welcomed my 150th follower. Thank you for your comments, thank you for personally getting in touch with me and sharing your own stories.
Chris is much older than when we started out and I’ve said and done all that can be said and done. The blog will still be here for reference and entertainment purposes only. My New Year’s project is to improve the categorization of my posts to make the blog more accessible. Pick a post, any post, and you may find something informative or just fun to read. If you would like a condensed version of the journey, do consider purchasing my book. I can guarantee, you’ll love it.
Just when I thought Chris had plateaued, something surprising happened. Chris’s motor tics have greatly diminished. I’ve noticed, too, that he is taking more initiative, such as going regularly to the gym and by speaking up for himself. The newfound initiative is a welcome sign because the negative symptoms of schizophrenia (motivation/initiative) are the hardest to treat and are what keeps most people with serious mental illness from working or studying.
This sudden shift appears to have been caused by his being prescribed an antidepressant back in August for his OCD symptoms (in addition to the Abilify he has been taking on and off at low doses for years). We learned that an antidepressant could reduce the tics. I’m now wondering if his problem all along has been some form of OCD and underlying depression that got labelled schizophrenia. These labels (and the drugs that are prescribed to treat the symptoms) are increasingly interchangeable (but not always effective).
Here’s what I know after fifteen years, and it’s not much. The treatment for what is called serious mental illness is woefully hit and miss. Nobody “gets” it. Psychiatrists haven’t much of a clue about what to do, and, despite years of trying, neither have I. We are at the mercy of the latest research results that may or may not help our relative. I had understood for many years that antidepressants were not recommended for schizophrenia, as it was thought that they could drive the person into mania. My husband was all in favor of trying one, Dr. Stern and I were not. Nobody even raised the possibility of OCD in Chris’s case.
I had no idea that motor tics were a sign of OCD and I’m guessing that this nugget of information is something that has come out only within the past decade. I recently stumbled across a page from the Mayo Clinic linking motor tics to an underlying symptom of schizophrenia. (Never heard that one before. Have you?)
I don’t know if these promising changes will last. Who knows what Chris’s future holds? I’m optimistic. He’s has a lot to give.
Someone who did have a clue about what is called mental illness was author Hermann Hesse, my go-to person for his reflections about journeys and discovery. Chris and I leave you with this:
“One must find the source within one’s own Self, one must possess it . Everything else was seeking — a detour, an error.”
― Hermann Hesse, Siddhartha
I’m asking a favor of you that will help inspire a more positive view of schizophrenia and get this healing message into the hands of a wider audience. My target audience is mothers of adult children who have been diagnosed with a serious mental illness. How do I attract their attention? Mainly through book promotion on my part and book reviews and recommendations on your part.
The Scenic Route: A Way through Madness has been stuck at five reviews for over a year now and sales are slowing. Mind you, the five so far are great reviews –just not enough of them to attract the attention of more readers who will contribute to the virtuous cycle of greater awareness through more reviews generating greater awareness.
Here’s what reviews of my book will do for potential readers:
Lessens their time and risk: A review of my book saves the buyer time and money by decreasing the risk that my book is not their cup of tea. The more informative a review is (what you liked, what message you took away, etc. ), the more confident the reader will be in knowing whether it’s right for them. Maybe in the end they will decide not to read the book, but they will at least know about it and perhaps even recommend it to readers who are “right” for the book.
Greater chance of finding what they want through visibility and buzz: Book reviews give books greater visibility and a greater chance of getting found by more readers. More book reviews will also help amplify my book’s reach among book clubs, bookstores, blogging communities, etc.
You may protest that you are not a writer, but I disagree. I know most of you are decent writers because I’ve corresponded with you over the years and your eloquence when putting “pen to paper” (figuratively speaking) is humbling. You write well because you are experts in how schizophrenia has impacted your own life story .
Thinking abut writing a review but stuck on what to say? How about a paragraph or two on a particular treatment approach that appealed to you, or on some random event in the book that struck your funnybone, or on how your experience compares with mine.
Speaking of book clubs: I would love to see my book on your book club’s list for 2020. Contact me for information about group discounts.
I’ve been busy of late in places other than the blogosphere. Like going to my 50th high school reunion, visiting friends and family in Ontario, taking on the role of chair of the communications committee in my gated community here in Florida.
I’ll start with the reunion, spread out like an Indian wedding over a wonderful three days in rural northern New York State. In a small town small school, everyone knows everyone, the years didn’t matter. We picked up with each other almost where we left off fifty years ago. At the banquet on Saturday night in the Catholic Church Hall I was honored to receive the Alumnae of the Year award for my writing efforts to promote a more holistic approach to the treatment of schizophrenia.
What was not so amazing was the number of people in the room who came up to me later to share how they have been personally touched by schizophrenia. One man told me that my speech evoked a flood of memories of a favorite cousin who disappeared years ago. Another woman approached me to tell me that her daughter is doing graduate work in psychology, focusing on schizophrenia. Someone else wanted to order my book for the local library. Schizophrenia touches many lives.
The community newsletter that I’m putting out once a month has given me a chance to get to know my neighbors more. In theory, it should be easy. I just work off a template and wait for board members and others to send me their news. In reality, there are always small problems that need fixing. It’s vying for time with this blog.
A few weeks ago, Chris and I began attending a metaphysical church where the emphasis is on awakening to the inspiration and guidance of spirit, focusing on healings, mediumship, and embracing the teachings of all Master Teachers.
The church also offers courses based on A Course in Miracles, the words of Jesus transcribed over many months by Helen Schucman, a professor of medical psychology at Columbia University. The book was published in 1975 by The Inner Peace Foundation. It’s essentially an instructional device in how to love (become whole), by letting go of the fear and delusional thoughts to which our ego clings. “It teaches that the way to universal love and peace—or remembering God—is by undoing guilt through forgiving others. The Course thus focuses on the healing of relationships and making them holy.”
only the mind can be sick, only the mind can be healed. Only the mind is in need of healing; we must change our mind about the “reality” of illusions; there is no such thing as “sin” (there are only errors (in thought) that we must correct; Illness of any kind may be defined as the result of the view of the self as weak, vulnerable, evil and endangered, and thus in need of constant defense; while truth is simple, it must stil be taught to those who have already lost their way in endless mazes of complexity. This is the great ill.
And what then is my error in thought in this journey of healing? That I did not put full trust in the healing power of the Universe (God, if you will) to let go of my fear that the result would be inferior to the result that I wanted. My ego knew this was a error that I was hoping I wouldn’t have to correct one day. I carried on nonetheless, endlessly trying new therapies that got closer to God in many respects (music and vibration) without callng on him by Name, in the hope that I almost singlehandedly could lead Chris to taking responsiblity to heal himelf. I was giving an intellectual nod to God that he obviously was important, except I wasn’t treating Him like he was. Where was the mysterious hand of God in all of this?
Recalling Level 5 of Dr. Dietrich Klinghardt’s healing pyramid, where I started off years ago:
The 5th level is the plane of self-healing. I call this level
the “spirit body”. The only relationship that exists here is the
relationship between the individual and god. The fifth level
is this part of God that reaches into us and wants to learn and
experience the physical word through this individual with all
his or her flaws, strengths and idiosyncrasies. A physician,
psychologist, or guru who claims that he can be helpful on
the 5th level is being arrogant, misleading, dangerous and
simply wrong. Anyone who truly has experienced this level
will have an attitude of deep respect and understands that it
cannot be explained using language. People that talk often
about “god”, “angels” and other spiritual experiences are suspicious to me. People too deeply involved in the “New Age”
often have significant unresolved family issues or guilt (that
is either taken on from another family member or “earned”
through one’s own mistakes). The pain and necessary healing work is often avoided by involving oneself in extensive
spiritual practices that never seem to resolve the real issues.
Any exploration of this level is left to the patient.
As practitioners we have no right to intrude on this plane.
An attitude of great respect and humbleness is appropriate. Interfering would be saying: “the part of God that
works through me ( the practitioner) is more important or
healed then the part of God you (the client) represent”.
I’m still around, I’m still interested in helping Chris where I can, it’s just that I can’t do it all, have never wanted to do it all, and I’m more and more interested in finding my own peace by turning this over to Chris and his Father.
Let go and let God.
From Wikipedia, the free encyclopedia
The Devil and Daniel Johnston is a 2005 documentary film about American musician Daniel Johnston. It chronicles Johnston’s life from childhood up to the present, with an emphasis on his experiences with bipolar disorder, and how it manifested itself in demonicself-obsession. The film was directed by Jeff Feuerzeig and produced by Henry S. Rosenthal
Daniel Dale Johnston (January 22, 1961 – September 10, 2019) was an American singer-songwriter and visual artist regarded as a significant figure in outsider, lo-fi, and alternative music scenes. Most of his work consisted of cassettes recorded alone in his home, and his music was frequently cited for its “pure” and “childlike” qualities.
Johnston spent extended periods in psychiatric institutions and was diagnosed with schizophrenia and bipolar disorder. He gathered a local following in the 1980s by passing out tapes of his music while working at a McDonald’s in Austin, Texas.His cult status was propelled when READ MORE
Schizophrenia and the Supernatural
By Esmé Weijun Wang January 30, 2019
“To say this prayer—burn this candle—perform this ritual—create this salt or honey jar—is to have something to do when it seems that nothing can be done.”
One winter morning I shuffled a deck of oracle cards with my eyes closed, and I realized that despite the blackness, I could still see what was happening in front of me. Here were the details of my hands, with the movements of each finger, every twitch of every narrow knuckle, made plain; I could see the cards, which were not clear enough to distinguish completely, but showed their blurry, colorful faces in broad strokes. I decided to further test this ability by holding colored pens, randomly chosen from a pouch, before my shut eyes. The pen test indicated that I could also “see” the colors behind my lids—imperfectly, yes, but well enough to grasp whether I was looking at a light color or a dark one, and I called out the hot-pink one immediately.
Journaling and drawing divinatory cards had both become routine parts of my life earlier that year, when I was fighting psychosis and struggling to make the world cohere; I’d found that tarot and oracle cards offered a decent framework for structuring a fractured existence. read more here
Best selling author Pete Earley reposted a recent New Yorker article written by a woman who lost her brother to homeless and then to suicide. It’s a familiar (and very sad) story that echoes the heartache that families encounter trying to figure out how to help our relatives and coming up short most of the time. I followed Pete over to his Facebook page and left the following comment:
Rossa Forbes What if, rather than kicking his son out of the house because he wouldn’t take his medication (and therefore precipating his long spiral into homeless and death) the father in this article had taken a different tack by siding with his son? Yes, Taking His Side by researching what the medications do, how efficacious they are, and finding out why people don’t like to take these drugs. Then, he could have said, “I understand the way you feel, and let’s try some alternatives first, of your choosing. I don’t like these medications, either, but at the very least, if, in the end, you agree to take a single medication, I will make sure that it is at the lowest dose possible. I will become your ally, not your adversary.” The author has got it right when she complains about the fact that educating ourselves doesn’t necessarily result in better outcomes: “In our family, we did all of this, and more—we took classes, consulted experts, conferred with lawyers, and met with people with schizophrenia who had rebuilt their lives. But applying what we learned was rarely simple. Though our efforts often helped us enormously, they did not, in the end, do much for Tom. I wonder, still, what could have saved him.” Had her brother an ally in a close relative who was willing to work with him (as difficult as these things are), much of the misery he was in could have been avoided. I say this as a mother of a young man with a diagnosis of schizophrenia, whom we kept at home probably far too long for his own good, and it was a strain, to say the least, but at least we knew where he was and we could work at building better communication skills and becoming allies. Rossa Forbes, author, The Scenic Route: A Way through Madness
We met with the neurofeedback specialist at the end of April to see how Chris’s brain mapping results looked now after he had undergone twenty neurofeedback sessions. As I expected, the results were good. His delta and theta absolute power readings in the Z scored FFT Summary Information sheet were now uniformly green instead of blighted by the occasional red mass. This looked like a good thing, and the specialist assured us that indeed it was. My son had improved in all functional areas and particularly in the critical pre-frontal cortex.
If you can understand the technical stuff that I just wrote, you are well ahead of me. I take it on faith from the impressive brain science jargon that neurofeedback can beneficially modify brain wave patterns. Does neurofeedback achieve the results it promises? I’ve no idea.
I do know that the neurofeedback specialist and I agreed that Chris was speaking more conversationally and on track than when he started the sessions. What I don’t know is if that is the results of neurofeedback or Chris feeling more relaxed with the man, or whether it was due to the many other things that are going on in his life right now, such as living on his own for the first time and having to get himself up in the morning and go to his vocational program.
Chris felt that much of the neurofeedback mimicked what he was doing in Focused Listening and what he understands about Rife frequencies. I can’t address that from a neurofeedback perspective but I’ll take his word for it. I do know from my own experience with Focused Listening how beneficial it has been for me. The key to logic and relaxation seems to be listening to high frequency sounds. In Rife frequencies, 528 herz is sometimes called the Cure-all frequency. Focused Listening emphasizes Mozart violin concertos (whch are in the 528 herz range). Neurofeedback frequencies are tailored to the individual’s actual brain wave patterns, which can be seen on the computer screen. I have no idea what the actual frequencies, in Chris’s case, are.
So, what was the outcome of the meeting with the neurofeedback specialist? Chris signed up for ten more sessions. He’ll be done by the end of July.
Ablation: A relatively new procedure that scars or destroys tissue in the heart with the aim of getting the heart to beat normally.
The doctor I consulted last week specializes in ablations. My cardiologist referred me to him because the heart medication wasn’t working to control my atrial fibrillation.
I wasn’t there that day because I wanted an ablation. I wanted more information about how I could fix my atrial fibrillation (A-fib) naturally, but I knew that I wouldn’t get that information from him. I had gotten that information myself and was hoping that taking cell ready liquid magnesium and other mineral supplements, listening to high frequency music, and correcting my breathing patterns over the past couple of months had put my heart in sinus rhythm.
The TV on the wall in the waiting room broadcast eerie warnings about all the possible things that can go wrong with your heart, no doubt a deliberate strategy to scare the bejeezus out of us sheeples so that ablation looks like the only solution.
After my name was called and I shuffled into the consultation room, the nurse sat me down and asked a few questions about my medication history. I told her the side effects to my heart medication were intolerable and I wanted off! She agreed that the drug should be dropped. I noticed a cardboard sign on the counter opposite us illustrating what dead arteries look like. I excused myself, got up off my chair and walked over to turn the picture to the wall. “Gee, said the nurse, “I had thought about removing it because we don’t deal with artery disease here.” (I couldn’t help noticing that the only pamphlet in the room was a glossy brochure on why you need an ablation. Continue to ramp up the fear, why don’t you?)
Next, the ECG. To my immense relief, I was in normal heart rhythm. I haven’t had a normal rhythm detected in a doctor’s office since one was last heard in December. I may still have A-fib, it’s just that it now it appears that I no longer have persistent A-fib. I’ll take that.
Now, if I was expecting this new doctor to talk to me about natural means of eliminating my A-fib I would be incredibly naive and misinformed about what a heart rhythm specialist in Florida actually does and how much he earns doing it. The top heart rhythm specialists (electrophysiologists) can make more than $600,000 a year, way more than even what cardiologists earn here. I’m guessing the doctor I was about to see earns well over a gazillion dollars per year because there are lots of us old folk in Florida who have arrythmias. We’re easy pickin’s.
Getting a second opinion from an MD in Florida strikes me as a waste of time. I had done my some of my ablation homework by searching for second opinions from YouTube cardiologists about what atrial fibrillation is and why ablation should be avoided. (Don’t let your doctor tell you otherwise: YouTube is a great source for medical second opinions.) What I learned from YouTube about ablation is this:
The operation is successful in about 30-60% of cases. Many people have to keep having them done and of course, it is a surgical procedure that carries its own risks. You should only consider ablation if you feel that your quality of life is impaired, for example, maybe you’re an athlete who doesn’t like getting winded or maybe you’re a sedentary type but having trouble doing even small amounts of physical activity. It’s not for people like me who are able to live with it. Better yet, rather than just living with it or going for the surgical option, why not first investigate the miracle of liquid magnesium? As ablation is a relatively new procedure, not much is known about what can happen to your heart down the road because of the procedure. You still need to take an anticoagulant even if your ablation is successful. Just because you have no more heart arrhythmia does not mean that your risk of stroke has diminished. Strokes are fellow travellers with A-fib but A-fib does not cause strokes, as my favorite YouTube cardiologist explained. You need an anticoagulant to mitigate against strokes, not an ablation.
I also learned from YouTube that A-fib can be minimized and even eliminated using natural means. The benefits of cell ready liquid magnesium are touted,** the desirability of losing weight if you are overweight, fixing any sleep apnea, cutting back on coffee and alcohol, destressing your life, etc. And, most critically, you don’t need an ablation if A-fib doesn’t bother you.
The doctor I was about to see makes his living by telling you that A-fib is a problem, and he can do something about it. Here we should all pause for a moment: Remember the enthusiasm for lobotomies back in the 1940s and 1950s where connections were severed in the prefrontal cortex of the brain in an effort to control mental illness? How well did that experiment turn out?
There was a quick knock on the door and the high earning specialist entered the room. We shook hands, exchange some pleasantries, and got down to business. I had about fifteen minutes to find a drugless way forward.
Right away he said that I could drop the heart drug I’m currently on. (Strange that even though the ECG reading was normal for the first time in months the doctor didn’t claim that the heart drug was now suddenly working. If there was another explanation for why I was in sinus rhythm, he wasn’t curious to know.) I briefly started talking about the magnesium effect, but he wasn’t listening. He had whipped out a pen and notepad and began drawing an electrical storm of misfiring atria while enthusiastically writing down and circling the names of the drug possibilities I could take to control the A-fib. No talk of ablation but also no talk of natural means. He was fixated on the drugs of which there were about seven. He mentioned a “pill in a pocket”, something I could take as needed when my A-fib kicked up. “Okay, I’ll take that one,” I said, not that I was planning on using it. He promised to phone my prescription in to the pharmacy. End of appointment.
On my way out the door he asked if he could give me more information on ablation, evidently hoping that I might reconsider. I said I’d be willing to consider having the procedure done if I felt that my quality of life was becoming impeded. “What are the chances that the procedure would actually be successful in my case?” I asked playfully. (I knew the answer.) Funny, but I don’t remember his answer. I think he laughed, but I’m not sure.
If you’ve read all the way through to this point, you may be wondering what on earth this has to do with my usual theme of schizophrenia. My point is this: How would someone half my age with a diagnosed mental health problem be able to do the amount of homework that is needed to be an effective self-advocate, let alone make himself understood in a fifteen minute med check?
Fifteen minute med checks are a danger ground.
*The usual disclaimer: I am not a doctor and what I am writing should not be construed as medical advice. I specialize in opinions only. Do your homework. Form your own opinions.*
**See Dr. Carolyn Dean, MD, ND