This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Saturday, September 27, 2025

Acetominophen Use and Autism- The Evidence

Using acetaminophen during pregnancy may increase children’s autism and ADHD risk

Mount Sinai Study Supports Evidence That Prenatal Acetaminophen Use May Be Linked to Increased Risk of Autism and ADHD 

Evaluation of the evidence on acetaminophen use and neurodevelopmental disorders using the Navigation Guide methodology

FDA memo to physicians Notice to Physicians on the Use of Acetaminophen During Pregnancy

Tylenol is a brand name for the drug acetaminophen, which is the last of a class of drugs still on the market that were derived from coal tar.  It was put on the market when it's predecessor, phenacetin, was taken off the market due to being highly carcinogenic.  The other drug from the class, acetanilide, was withdrawn from the market because it was found to be hepatotoxic (toxic to the liver) and caused methamaglobinemia (blocking the ability of hemoglobin to carry oxygen).  


Thursday, September 25, 2025

Mast Cell Involvement in Other Diseases and Disorders

Mast cell involvement in other diseases and disorders"
In general:
 
 
"Recent evidence indicates that neuro-inflammation could contribute to seizures. We hypothesize that brain mast cell activation due to allergic, environmental and/or stress triggers could lead to focal disruption of the blood-brain barrier and neuro-inflammation, thus contributing to the development of seizures."
“Allergic Symptoms” in Children with Autism Spectrum Disorders. More than Meets the Eye?Activated mast cells excrete mitochondrial components, triggering autoimmunity
Children with autism have elevated levels of mast cell mediators in their blood
Mercury causes mast cells to release pro-inflammatory mediators
Is a subtype of autism an allergy of the brain?
Focal Brain Inflammation in Autism
Neuroinflammation and Autism

In the Gut:
Mast Cells in Gastrointestinal Disease
Mast Cells and Irritable Bowel Syndrome: From the Bench to the Bedside.
Intestinal mast cells in gut inflammation and motility disturbances
Mast Cell Activation in Gallbladder Disease
Mast cell–nerve axis with a focus on the human gut
Mast cells and Cyclic Vomiting Syndrome (also migraine and leaky gut)
Consider Hereditary Angioedema in the Differential Diagnosis for Unexplained Recurring Abdominal Pain
Imatinib and Trigger Avoidance for Mast Cell Activation Syndrome Presenting With Attacks of Abdominal Pain, Nausea, Vomiting, and Diarrhea
Hereditary Angioedema Presenting as Recurrent Acute Pancreatitis
Allergic mastocytic gastroenteritis and colitis: an unexplained etiology in chronic abdominal pain and gastrointestinal dysmotility


In Neurological Conditions:
Mast Cells:  versatile gatekeepers of pain
Mast Cells- the key to Multiple Sclerosis?
Mast Cells, histamine, and Hydroxyzine in MS
Mast cells may lead to abnormal nerve growth such as Neurofibromatosis
Mast cells are involved in the pathogenesis of neurofibromas
Mast cells in the autonomic nervous system and potential role in disorders with dysautonomia and neuroinflammation
Brain Injury-Mediated Neuroinflammatory Response and Alzheimer's Disease

In the Cardiovascular System and Blood:
Cardiovascular symptoms in patients with systemic mast cell activation disease
Evidence for a Role of Mast Cells in the Evolution to Congestive Heart Failure
"These observations suggest that mast cells play a critical role in the progression of heart failure. Stabilization of mast cells may represent a new approach in the management of heart failure."
The role of mast cells in atherosclerosis

Cardiac mast cells: the centerpiece in adverse myocardial remodeling
Cardiac mast cells cause atrial fibrillation through PDGF-A–mediated fibrosis in pressure-overloaded mouse hearts
Mast Cells as Effectors in Atherosclerosis
Effects of Primary Mast Cell Disease on Hemostasis and Erythropoiesis
Mast cell activation disorder masquerading as pure red cell aplasia
Polycythemia from mast cell activation syndrome: lessons learned
Mast cell activation syndrome masquerading as agranulocytosis
Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders


Monday, July 14, 2025

Shortages of Medications and Medical Products

 How hospitals are grappling with the IV fluid shortage wrought by Hurricane Helene

 ASHP Current Drug Shortages

ASHP Updates IV Fluid Shortage Resource; FDA Announces Compounding Flexibilities

Hurricane Helene: Baxter's manufacturing recovery in North Carolina

Below is information on the current (October 2018) IV Benadryl shortage:
ASHP update (10/22/2018) regarding the IV Benadryl shortage
For more specific and personal information about the shortage and how it affects patients see these posts from Lisa Klimas of the MastAttack blog and Cheyanne Perry of the Hospital Princess Vlog 

Below is information on the current (October 2018) epi pen shortage:
The Mastocytosis Society statements and updates

Extended Expiration Dates for Select Lots of EpiPen®0.3 mg Auto-Injectors and its Authorized Generic (from Mylan who is the distributor of the epi pen)
"On Aug. 21, 2018, the U.S. Food and Drug Administration announced to extend the expiration dates of specific lots of EpiPen 0.3 mg Auto-Injectors and its authorized generic version, after review of stability data. Patients should have confidence in using the products from these particular lots as Pfizer works to stabilize supply, which is anticipated in the fourth quarter of 2018."

"Mylan, the distributor, is expediting shipments upon receipt from Pfizer and continues to encourage patients who are experiencing difficulty accessing product to call its Customer Relations team at 800-796-9526 for assistance in locating other pharmacies. To further assist patients during this period of limited supply, Mylan recently extended its Customer Relations hours to Monday through Friday, 8 a.m. to 7 p.m. ET and Saturday through Sunday, 11 a.m. to 4 p.m. ET."


 


Saturday, July 12, 2025

Histamine Release From Basophils

[An attempt to block histamine release from basophils granulocytes with antibodies obtained as a result of long-term immunization]
"Microbes can play important role as hypersensitivity factor in some allergo-inflammatory processes. Bacterial products may act as basophil histamine liberators through immunological (IgE-mediated) and nonimmunological--particular lectin-sugar way.

Conclusions: 1. Bacteria induced basophil histamine release through two ways: immunological (IgE-mediated) and non-immunological (sugar-lectin interactions). 2. Non-immunological interactions played the main role in basophil histamine release induced by bacteria--both in normal individuals and asthmatic patients. 3. Sera of immunized with bacteria animals partially reduced basophil histamine release induced by homologous strains (Tab. 7). 4. An incubation of autologous bacterial strains with asthmatic patients's sera collected after autovaccines treatment has no influence on basophil histamine release induced by these microbes (Tab. 9). 5. There was no correlation between the skin reactivity to bacteria (both in healthy persons and in asthmatic patients) and the intensity of basophil histamine release induced by microbes."

Increased release of histamine in patients with respiratory symptoms related to perfume
“Perfume induces a dose-dependent non-IgE-mediated release of histamine from human peripheral blood basophils. Increased basophil reactivity to perfume was found in patients with respiratory symptoms related to perfume.”


Notes for Bessel Van Der Kolk Discussing Trauma (author of The Body Keeps the Score)

How the body keeps the score on trauma | Bessel van derKolk for Big Think+
Bessel Van Der Kolk MD, psychiatrist, neuroscientist, has studied trauma for about 50 years.  The approach of mainstream psychotherapy is that “there is something wrong with you, and I need to fix you”.  Trauma requires a very different approach.  Trauma can look like- people flying off the handle, people shutting down, drug or alcohol addiction, explosive anger, passivity and “spacing out”, seeming to be “stuck in the past” and unable to be meaningfully involved in the present.  Difficulty regulating/modulating responses to the environment. 

1941 book by Dr Abram Kardiner, a psychoanalyst, noted of soldiers in world war that they have a “physioneurosis.  Their bodies continue to re-experience that very terrible, frightening situation, and that event keeps coming back in terms of images, behaviors, and physical sensations.”  Definition of PTSD “These people have been exposed to an extraordinary event that’s outside of normal human experience.”  WRONG- trauma is NOT unusual.  “The nature of trauma is that an experience enters into your ears, into your skin, into your eyes, and it goes down into a very primitive part of your brain that automatically interprets what’s going on.”  The amygdala?   It tried to figure out if you’re safe or in danger, and when there’s nothing you can do to stop the inevitable from happening, you go into fight/flight or collapse (freeze).  In the long term you react to mild stressors as if your life is in danger.  Basically your brain hasn’t figured out yet that the danger is over.  Most people have no idea that their reactions to things, that are overblown from trauma, have anything to do with the past and not just what’s present. 

“The tradition in mental health is to dismiss the reality of people’s lives.”  Things such as poverty, racism, unemployment, affect people’s behavior and those behaviors don’t respond well to drugs or other medical treatment.  (The idea that they should is eugenics- you are happy and well-adjusted when you are in your “proper place”.)  “I need to take care of the wounds that I’m carrying inside of me”.  Self-compassion is important for trauma. 

Trauma is not what happened to you, it’s how you respond.  One of the most important factors, especially when you are a child, is if someone is there for you to help you.  If they can make you feel understood and bring safety and comfort. 

Dr. Bessel van der Kolk | The Body Keeps the Score:Restoring an Inner Sense of Safety
Survivors can become stuck in fight/flight/freeze, and the resulting stress hormones can severely affect the immune system and organs.  “When you go into trauma, you lose your frontal lobe.  You become dumbfounded.”  The impact of trauma is on your limbic system- it’s in charge of the housekeeping of your body.  Trauma is an experience of horror.  You cannot tell your trauma story, your whole body keeps getting overwhelmed.  You feel trauma in your body (but what about dissociation?).  It affects every part of your biology- your sleep, your eating.  You try to numb yourself.  When you shut down, you can’t learn and take in new experiences.  People use substances to try to control their bodies.  After the trauma is over, will people be able to function?  It’s very hard to treat trauma. 

How to move through trauma and recover- establish a community of people, who have your back.  Who are there for you no matter what.  We are social animals and we need people around us who believe in us when we are in distress.  Create community.  Tell your story if you can.  Trauma can make you feel helpless and collapse.  Healing includes building a sense of agency, that you CAN do things.  You need to learn to regulate yourself.  In his study, yoga did better than any traditional psychiatric medications in treating trauma.  Dancing and music.  Boxing requires you be in tune with the people around you.  When you’re traumatized you get scared of yourself.  You need to learn to access yourself.  You’re afraid of your internal reactions and memories.  You need to meet yourself and learn to tolerate yourself.  Also neurofeedback and psychedelics. 

Trauma Has NO Quick-Fix | Dr Bessel van der Kolk on theBody Keeps the Score.
“Trauma overwhelms your capacity to filter, focus, and concentrate.”  Different treatments work for different people.  Stay curious.  How can you help someone lead a more satisfying life?  How to re-establish a sense of safety?  Neglect- people need to be known and seen- that’s where safety starts.  If you’ve been neglected and abused, you may not know yourself.  One of the prerequisites to healing is learning to manage your own state. 

What trauma does to your brain and body | Bessel van derKolk
Stress is different than trauma, when it’s over it’s over, but trauma isn’t. 

The Mind Hides the Score | Dr Bessel van der Kolk onTrauma and the Mind.
Our attachment system is a major determinant of how we respond to traumatic events.  What’s more important than what happened to you is who was there for you?  Kids with secure attachments react very differently to severe burns than kids whose parents are absent or traumatized.  The attachment system trumps the trauma system.  If you are in fight/flight, you are less able to care for your offspring, and they become less resilient.  Predatory abusive priests knew how to choose a target and seduce them by telling them they’re safe with them.  Physical immobilization is amajor factor in an event becoming traumatic.  It matters if you were able to do something, can you activate your stress hormones?  Trauma is not an “event” -it makes you live in a completely different world.  Your body doesn’t differentiate between a physical trauma (an injury, a toxin) and an emotional trauma.  Your body can feel helpless in the face of a disease or toxic exposure.  The first thing is to make it safe to feel what you feel.  Touch is the greatest comfort that people can have. 

Therapist Shares 8 Signs of Trauma | The Body Keeps theScore
Bessel Van Der Kolk is a medical doctor who talks about the brain and talks about trauma.
1) Dissociation, numbing.  Parasympathetic functions have shut down.  Can be physical, is usually emotional.  Often describes as feeling “out of body”. 
2) Body always in an aroused state.  In constant state of perceived danger.  Means high adrenaline and cortisol levels.  The mind/brain doesn’t know that the danger is over.  People then turn to manual or external ways to calm down including drugs, alcohol, masturbation, starvation, or cutting (self-harm). 
3) Self-loathing.  People often blame themselves for their traumas. 
4) Rigidly stuck in the past.  Involves thalamus and pre-frontal cortex.  Thalamus is sensory interpretation and processing.  Pre-frontal cortex is time-keeper, processes events chronologically. 
5) Speechless terror.  Becoming mute in certain situations. 
6) Loss of self.  This also means a difficulty identifying what it is “other”.  This can result in confusing whether the danger is someone else or inside yourself. 
7) Physical immobility.  A perpetrator may actually tell you not to move, or there can be other reasons why you might learn that it is safer to stay still than to move and then freeze up when triggered. 
8)  Difficulty learning new information.  This can look like learning something and making progress, only to find yourself back where you started having to learn it again.  Sometimes people’s growth and learning can be stopped at the age when they experienced trauma, and this can make them seem immature.  

Therapist Shares How to Heal from Trauma | The Body Keepsthe Score
Acupuncture and yoga can help address the trauma in the body without having to talk about it.  Building community, “communal techniques”- trauma can be isolating and make us feel cut off from others, so activities such as synchronized dancing and singing together can help, and joining a community such as a church can help you feel like you have a place where you belong and that you’re a part of something bigger.  “Re-engaging with the outside world.”  These things help to bring your body and brain back on line “in a way that is cohesive to living a fully functional life.” 

Imagination is important for recovering from trauma and finding a way out of the stuckness in the past, including flashbacks, nightmares, and struggling to make sense of what is happening in the present.  People can stay in what’s familiar, even if it’s unpleasant, because it’s predictable.  Doing improv can build the imagination and help build connection with others.  Art can be therapeutic and help us process our trauma and take control of the narrative, and maybe to see it in a new way, and separate from the experience in the past.  Theater is similar, but also involves learning that you can have the same moment over and over and also have it be different every time.   “Your job is not to be “shrinks”, your job is to be mind-openers.” – Bessel Van Der Kolk in the training.  A good therapist wull help you see your worth and build your self-esteem. 

More direct trauma therapies can include role-playing and “psychodrama” in which you act out what the ideal reaction would have been when you told someone what happened to you, as a way to re-work your narrative about the trauma.  EMDR = Eye Movement Desensitization and Reprocessing.  EMDR helps to reduce or eliminate the physiological symptoms such as sweating, racing heartbeat, that can happen when talking about your trauma.  EMDR is more appropriate for “one time” or single event trauma, when you need to think about it without symptoms, but not as appropriate for complex trauma. 

Other ideas from her practice include writing a letter to someone who traumatized you or failed to protect you, telling them what happened from your point of view, how it made you feel, and how it has impacted you to the present.  You can destroy or keep the letter, but if you want to send it to the person, she suggests including what that person could do now to help you have closure or repair the relationship- do you want an apology?  An explanation?  Acknowledgement?  For youself, you can write the event as you wished it had happened, or including the ways you wished you could have responded and protected yourself.  Slowly start re-exposing yourself to things that remind you of someone you lost or who betrayed you, such as places, things, music, etc.  This is so that people can start “reclaiming aspects of their life that they have been denying themselves since the traumatic event.”  People often find that the actual experience isn’t nearly as bad as they expected it to be. 

Being traumatized in the way that qualifies for a PTSD diagnosis, usually means that are life is “stopped in its tracks” and not progressing, and we are not functioning or able to work towards our goals.  Not everyone is “traumatized”. 

Thursday, July 3, 2025

Medical and Physiological Underlying Causes of Mental Illness

See also- Autoimmune Encephalitis (including PANDAS/PANS)

See also- Mast Cells, MCAS, and Psychiatric Symptoms 

BBC Ideas: The misdiagnosis that sent me to psychiatric hospital
Hannah had autoimmune encephalitis but was misdiagnosed as mentally ill. 

Never fear, the gut bacteria are here: Estrogen and gut microbiome-brain axis interactions in fear extinction

The Misdiagnosis Machine: How Thyroid Problems Mimic the Symptoms of Mental Illness

Mitochondria - The Key To Disease and Mental Health with Dr. Martin Picard 

Are Mental Illnesses Really Metabolic Disorders? | with Dr. Chris Palmer 

Hypokalemia can cause delirium, depression, delusions, hallucinations, psychosis.  Physical signs include cramps, nausea, heart arrhythmia, fatigue, paralysis, tachycardia

Vitamin D deficiency Helps depression and can reduce suicide by 45% Veterans see Study.

The Lactic Acid Response to Alkalosis in Panic Disorder : An Integrative Review
"Panic patients consistently show exaggerated lactic acid response to alkalosis, whether produced by hyperventilation or by sodium lactate infusion. Understanding why this occurs may provide important clues to the pathogenesis of panic disorder. Although brain hypoxia from excessive hypocapnia-induced cerebral vasoconstriction is often cited as the mechanism of elevated brain lactic acid in panic disorder, studies of brain metabolism show that hypocapnia rarely leads to brain hypoxia. Increased lactic acid production is a normal response to intracellular alkalosis and to intracellular cyclic AMP. Thus, other possible mechanisms of the exaggerated lactic acid response in panic disorder include a disturbance of mechanisms regulating intracellular pH and factors increasing intracellular cyclic AMP. Both mechanisms are consistent with the suffocation false alarm theory of panic disorder. This review suggests a theoretical framework for future magnetic resonance spectroscopy studies that can test some of the predictions of these competing models."

"Cerebellar Cognitive Affective Syndrome: Anatomy & Implications" - Jeremy D. Schmahmann, MD
A patient with dementia and schizophrenia returns to previous functioning after surgery to correct a chiari and syrinx.  Symptoms included school failure, manic, obsessive, compulsive, ruminative, treated for ADHD with poor results, anxiety, racing thoughts, hostile/aggressive, poor processing of conversations and loss of social skills, profanities, meanness, headaches, gait abnormalities, reclusive, depression.  After treatment, psychiatric issues gone, IQ still 148 but grades not fully back.

Another case- developmental delay, expressive language more affected than receptive, sensory-motor, executive function impairments, ASD diagnosis.  “seizure-like episodes” confusion, involuntary movements, uncharacteristic behaviors in “episodes”.  Worsening- autism, OCD, communication shut down, worse anxiety, tics; intrusive thoughts, ritualistic behaviors, insomnia, trance-like states in which he doesn’t seem to know his location or recognize his family.  Car rides would create “sensory episodes”.  Self-injury, laughing/coughing episodes, inappropriate laughter.  Decompression of brain stem ended seizure/tremor like episodes and pain, present and enjoying family, still reserved.  “It is apparent that the decompression of the brain stem/cerebellum/medulla and restoration of the CFS flow has eliminated the seizure-like tremoring, and other acute neurologic havoc that escalated to a dangerous neuro-psychiatric state when left unaddressed or otherwise mistreated for 11 months.”
“Phenomenon of autistic-like behaviors that resolve after decompression surgery” 
Cerebellar syndrome started as gait impairment, speech trouble, difficulty coordinating arms, oculomotor abnormalities.  Most of the cerebellum in humans is not related to motor control.  CURRENT- executive function (planning, set shifting, verbal fluency, abstract reasoning, working memory), spatial cognition (visual spatial organization and memory), language deficits (agrammatism, aprosodia, anomia), personality change (blunting of affect, disinhibited and inappropriate behavior).  Trouble multitasking.  In kids, memory problems can look like dissociation, fracturing.  Cerebellar Mutism Syndrome-maximally severe CCAS- profound buccofacial apraxia and apraxia of speech, emotional dysmetria, may include ataxia and cranial nerve palsies.  Cerebellar agenesis- surprisingly good motor abilities, child-like speech, reduced intellectual and executive functioning.  No ataxias in which cognition is entirely spared.  
“cerebellum optimizes performance by modulating behavior around a homeostatic baseline automatically, implicitly, and according to context.  

MCAS and Psychiatric Symptoms