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!

Friday, August 2, 2019

How to Cook Rice and Other Grains

Perfect Basmati Rice

1 c basmati rice
2 c water (or broth)
1 1/2 T butter, bacon grease, or other cooking fat
1/2 tsp salt

Rinse the rice several times until the water runs clear.

Wild Rice

Bring one cup of wild rice and 4 cups of water or broth to a boil (add 1/2 tsp salt if not using salted broth).  Cover and simmer for 45 minutes, then check for doneness.  The rice may need up tp 15 minutes more.  When done, drain excess liquid and fluff with a fork.

Rice cooked in the oven

Rinse 1 cup of long-grain white rice.  Melt 1 T of butter, lard, coconut oil, or other cooking oil in a large oven-proof pan.  Saute the rice in the fat until it starts to smell nutty.  Add 2 cups of water (or broth), 1 tsp of salt, mix to combine, and bring to a boil.  Cover with a tight-fitting lid and bake for 17 minutes in a 350 degree oven, then take out of the oven and let sit for 10 minutes with the lid still on.

Buckwheat groats

Add one cup of buckwheat groats and 1/2 tsp salt to two cups of boiling water.  Bring back to the boil then reduce heat, cover the pot, and simmer for 10 to 15 minutes.  Drain excess liquid once the groats are tender and done.


Thoroughly rinse quinoa grains (the grains have a coating with an unpleasant taste so this is important).  Bring 1 cup of quinoa, 2 cups of water or broth, and 1/4 tsp of salt to a boil and simmer (covered) for 15 to 20 minutes.  Remove from heat and let sit for 5 minutes.

Saturday, April 13, 2019

Serotonin Syndrome (aka Serotonin Toxicity or Serotonin Storm)

What is Serotonin Syndrome?

Serotonin Syndrome is a condition that occurs when levels of serotonin, a neurotransmitter, rise too high and specific serotonin receptors are overstimulated.  Symptoms can be mild and often begin with headache, shaking and tremors, racing heart, nausea, feeling too hot, and mild anxiety and confusion.  Progressive symptoms can include diarrhea, vomiting, and other digestive system symptoms; hyperthermia, clonus, hyperreflexia, and an increase in anxiety, OCD, and panic.  In some cases it can progress to life-threatening symptoms including seizures, cardiac symptoms, heart attack, severe hyperthermia, coma, and death.  In mild cases treatment is usually limited to removal of the causative medication(s).  In more serious cases the serotonin antagonist medications cyproheptadine or chlorpromazine can be used to rapidly reduce the level of serotonin in the body.  Moderate to severe cases are a medical emergency and require emergency medical treatment.  This syndrome is rarely recognized (or even known about) by most doctors and other medical personal including EMTs/paramedics and ER doctors and nurses (even specialists).  Those who are aware of it often have an oversimplified understanding of it's potential causes and presentations and are likely unaware of the few acute treatments available.

Serotonin is one of the mediators released from mast cells during a mast cell reaction and is therefore something that mast cell patients should be aware of, as the potential for serotonin toxicity seems to be a situation even less recognized than that caused by drug interactions.  Additionally, the majority of serotonin in the body is in the digestive tract (about 80-90%) and blood platelets (about 10%) so disorders involving those two systems seem to also be risk factors (I will elaborate on these interactions in another post).  Acute Serotonin Storm resulting from the combination of SSRIs and MAOIs does seem to the most widely recognized case and is (in my experience) the most effective way to get a doctor or other medical provider to realize what you're talking about (the only way that I have successfully gotten doctors to take my serotonin sensitivity seriously is to tell them that I have genetics that mimic the situation in which a person is taking both an SSRI and an MAOI).  Genetic mutations involving enzymes that play a role in regulating serotonin levels in the body also seem to be significant in at least some patients, including myself (more on that in another post as well).

More information about serotonin syndrome...  (emphasis added)

Overview of serotonin syndrome.
"SS commonly occurs after the use of serotonergic agents alone or in combination with monoamine oxidase inhibitors. SS classically consists of a triad of signs and symptoms broadly characterized as alteration of mental status, abnormalities of neuromuscular tone, and autonomic hyperactivity.  However, all 3 triads of SS may not occur simultaneously. Clinical manifestations are diverse and nonspecific, which may lead to misdiagnosis. SS can range in severity from mild to life-threatening. Most cases of SS are mild and resolve with prompt recognition and supportive care. Management of SS involves withdrawal of the offending agent(s), aggressive supportive care to treat hyperthermia and autonomic dysfunction, and occasionally the administration of serotonin antagonists--cyproheptadine or chlorpromazine. Patients with moderate and severe cases of SS require inpatient hospitalization."

Serotonin syndrome: a complex but easily avoidable condition.
"Serotonin syndrome is a potentially life-threatening adverse drug reaction caused by excessive serotonergic agonism in central and peripheral nervous system serotonergic receptors. Symptoms are characterized by a triad of neuron-excitatory features, which include (a) neuromuscular hyperactivity -- tremor, clonus, myoclonus, hyperreflexia and, in advanced stages, pyramidal rigidity; (b) autonomic hyperactivity -- diaphoresis, fever, tachycardia and tachypnea; (c) altered mental status -- agitation, excitement and, in advanced stages, confusion. It arises when pharmacological agents increase serotonin neurotransmission at postsynaptic 5-hydroxytryptamine 1A and 5-hydroxytryptamine 2A receptors through increased serotonin synthesis, decreased serotonin metabolism, increased serotonin release, inhibition of serotonin reuptake or direct agonism of the serotonin receptors. The etiology is often the result of therapeutic drug use, intentional overdosing of serotonergic agents or complex interactions between drugs that directly or indirectly modulate the serotonin system. Due to the increasing availability of agents with serotonergic activity, physicians need to more aware of serotonin syndrome. "

The Serotonin Syndrome

Understanding the symptoms...

Tachypnea is a form of rapid breathing similar to hyperventilation, but differs in that it involves rapid shallow breathing whereas hyperventilation (at least in some medical references) refers to rapid deeper breathing and seems to be associated only with mental health disorders such as anxiety and panic, according to many medical sources.

In this video two physical therapists explain what clonus is and how to recognize it.  It is a form of involuntary tremor that is essentially part of a reflex that the body can't control due to an injury or disorder.  It can be limited to a few repetitions of a movement (such as the ankle moving up and down) or can become continuous.

The Many Presentations/Manifestations of Serotonin Syndrome

Headache as a presenting feature in patients with serotonin syndrome: a case series.

Serotonin syndrome in patients with headache disorders.
"Various serotonergic drugs are used in different headache disorders. Therefore, a possibility of developing SS exists in patients with headache. Herein, we are reporting two patients with headache disorders who developed SS.Case 1: a 49-year-old man had a 6-year history of episodic cluster headache (CH). However, he had never been diagnosed with CH before reporting to us. He had been receiving amitriptyline, tramadol/acetaminophen combination and flunarizine. Lithium was started for CH. He developed features consistent with SS. The patient responded to cyprohepatdine. Case 2: a 36-year-old chronic migraineur was on amitriptyline. Addition of sodium valproate led to the development of new features that fulfilled the criteria of SS. The patient responded to cyprohepatdine.  As SS may be fatal, there is a need to increase awareness about SS in physicians treating patients with headache."

Serotonin syndrome presenting as surgical emergency: A report of two cases.

Psychiatric Emergencies for Clinicians: Emergency Department Management of Serotonin Syndrome

Generalized Itching and Lower-Extremity Spasticity in a Patient with Intrathecal Baclofen Pump

Serotonin syndrome presenting as hypotonic coma and apnea: potentially fatal complications of selective serotonin receptor inhibitor therapy.

Diagnosis and Management of Serotonin Syndrome

Prevention, Diagnosis, and Management of Serotonin Syndrome

Recognition and treatment of serotonin syndrome

"Numerous clinical features were associated with serotonin toxicity, but only clonus (inducible, spontaneous or ocular), agitation, diaphoresis, tremor and hyperreflexia were needed for accurate prediction of serotonin toxicity as diagnosed by a clinical toxicologist. Although the learning dataset did not include patients with life-threatening serotonin toxicity, hypertonicity and maximum temperature 38 degrees C were universal in such patients; these features were therefore added. Using these seven clinical features, decision rules (the Hunter Serotonin Toxicity Criteria) were developed. These new criteria were simpler, more sensitive (84% vs. 75%) and more specific (97% vs. 96%) than Sternbach's criteria....  These redefined criteria for serotonin toxicity should be more sensitive to serotonin toxicity and less likely to yield false positives."

Serotonin toxicity: a practical approach to diagnosis and treatment.  
"Excess serotonin in the central nervous system leads to a condition commonly referred to as the serotonin syndrome, but better described as a spectrum of toxicity - serotonin toxicity. Serotonin toxicity is characterized by neuromuscular excitation (clonus, hyperreflexia, myoclonus, rigidity), autonomic stimulation (hyperthermia, tachycardia, diaphoresis, tremor, flushing) and changed mental state (anxiety, agitation, confusion). Serotonin toxicity can be: mild (serotonergic features that may or may not concern the patient); moderate (toxicity which causes significant distress and deserves treatment, but is not life-threatening); or severe (a medical emergency characterized by rapid onset of severe hyperthermia, muscle rigidity and multiple organ failure). Diagnosis of serotonin toxicity is often made on the basis of the presence of at least three of Sternbach's 10 clinical features. However, these features have very low specificity. The Hunter Serotonin Toxicity Criteria use a smaller, more specific set of clinical features for diagnosis, including clonus, which has been found to be more specific to serotonin toxicity. There are several drug mechanisms that cause excess serotonin, but severe serotonin toxicity only occurs with combinations of drugs acting at different sites, most commonly including a monoamine oxidase inhibitor and a serotonin reuptake inhibitor. Less severe toxicity occurs with other combinations, overdoses and even single-drug therapy in susceptible individuals. Treatment should focus on cessation of the serotonergic medication and supportive care. Some antiserotonergic agents have been used in clinical practice, but the preferred agent, dose and indications are not well defined."

Prevention, recognition, and management of serotonin syndrome.

Controversies in Serotonin Syndrome Diagnosis and Management: A Review.

Risks, Use and Management of Serotonergic Drugs

"We describe six patients diagnosed with serotonin syndrome after exposure to drugs with serotonergic activity. Drug interactions occurred as a result of a combination of tricyclic antidepressants, selective serotonin reuptake inhibitors, selective noradrenaline reuptake inhibitors or monoamine oxidase inhibitors. Management included supportive care and the use of non-specific serotonin antagonists (cyproheptadine, benzodiazepines and chlorpromazine). All patients made uneventful recoveries."

Serotonin syndrome resulting from coadministration of tramadol, venlafaxine, and mirtazapine.
"SS is a potentially fatal iatrogenic complication of serotonergic polypharmacy. Considered idiopathic in presentation, it typically appears after initiation or dose escalation of the offending agent to a regimen including other serotonergic agents. All drugs that directly or indirectly increase central serotonin neurotransmission at postsynaptic 5-HT(1A) and 5-HT(2A) receptors can produce SS. Individual vulnerability appears to play a role in the development of SS. It is likely that the activation of 5-HT(1A) receptors by mirtazapine, the combined serotonin reuptake inhibition by venlafaxine and tramadol, as well as possible serotonin release by tramadol, contributed to the development of SS in this case."

eComment: Serotonin syndrome: pharmacogenomics and treatment

Monoamine oxidase inhibitors, opioid analgesics and serotonin toxicity.

[Serotonin syndrome and pain medication : What is relevant for practice?].
"Opioids with serotonergic effects include the phenylpiperidine series opioids fentanyl, methadone, meperidine and tramadol and the morphine analogues oxycodone and codeine. In combination with certain serotonergic drugs, e.g. antidepressants, they can provoke serotonin syndrome. In patients with such combinations, special attention should be paid to clinical signs of serotonergic hyperactivity. Higher risk combinations (e.g. monoamine oxidase inhibitors with tramadol) must be avoided. Treatment with serotonergic agents must be stopped in moderate or severe serotonin syndrome. Patients with a severe serotonin syndrome require symptomatic intensive care and specifically a pharmacological antagonism with cyproheptadine or chlorpromazine."

Serotonin syndrome induced by fluvoxamine and oxycodone.
"A 70-year-old woman developed severe serotonergic features, including confusion, nausea, fever, clonus, hyperreflexia, hypertonia, shivering, and tachycardia, following the addition of oxycodone 40 mg twice daily to fluvoxamine 200 mg/day, easily fulfilling diagnostic criteria for serotonin syndrome. Discontinuation of the offending drugs resulted in resolution of her symptoms over 48 hours, and no other cause of the syndrome was identified."

Treatment of the serotonin syndrome with cyproheptadine
"All patients were administered cyproheptadine (4–8 mg orally) for serotonergic signs. Three had complete resolution of signs within 2 h of administration. Another two had a residual tremor or hyperreflexia following the first dose, which resolved following a repeat dose. There were no adverse outcomes from cyproheptadine use. The role of specific serotonin receptor antagonists such as cyproheptadine in the treatment of the serotonin syndrome remains to be delineated. Its use should be considered an adjunct to supportive care. Currently, it is unknown whether cyproheptadine modifies patient outcome."

"Chlorpromazine is in the typical antipsychotic class. Its mechanism of action is not entirely clear but believed to be related to its ability as a dopamine antagonist. It also has anti-serotonergic and antihistaminergic properties."

Friday, April 12, 2019

How to Make Hemp Milk

How to Make Help Milk

Soak 1/2 c hemp hearts in 4 c water for several hours (or overnight in fridge).

Pour mixture into blender and blend until smooth.

Strain liquid through a fine sieve or cheesecloth to make it more smooth if desired.

Optional- add a little maple syrup or other sweetener, and a little vanilla or other flavor if desired.

Store covered in the fridge.  Lasts about 4 or 5 days in my experience.

Simple Sweet Snacks

Banana Cookies

2 very ripe bananas
1 1/2 c GF oats (I use rolled quinoa)
1/2 c chocolate chips (or cacao nibs, dried fruit, or other "filling"
Optional- cinnamon, vanilla, or other flavoring

Mix all ingredients together and form into desired cookie shape.

Bake at 350 for 12 to 15 minutes.

Chocolate "Magic Shell" Ice Cream Topping

Melt 6 to 8 ounces of chocolate, any desired sweetener depending on how sweet the chocolate is, and 2 T of coconut oil in a double boiler.  Keep warm enough to stay melted until pouring it over the ice cream.

Frosting Recipes

Maple Syrup Frosting

2 c maple syrup
3 egg whites
1/8 tsp salt
(for a smaller batch use 1 c syrup and 2 egg whites)

Over medium-high heat, bring syrup to 242 degrees without stirring.
Beat egg whites with salt until soft peaks form.
Still beating on high, pour hot syrup into egg whites slowly.

Strawberry Frosting (based on this recipe)

1 cup organic palm shortening, slightly chilled but not hard 
2/3 cup honey or maple syrup
1 tsp vanilla extract
4 T arrowroot powder 
4 tsp coconut flour, sifted 
2 T cold coconut cream

4 T berry (or other) powder

The berry powder can be made from grinding freeze-dried fruit in a coffee or spice grinder.

Blend all ingredients in a bowl, then drizzle coconut oil in slowly with mixer running.

Monday, April 8, 2019

MALS and SMAS: Two Very Rare Syndromes to Consider When Eating Becomes Unbearable

MALS stands for Median Arcuate Ligament Syndrome and is when the celiac artery (and sometimes the celiac nerve ganglion) gets compressed chronically between the abdominal aorta and the median arcuate ligament (sometimes called celiac artery compression syndrome). Symptoms are thought to be caused by reduced blood flow to the digestive system (possibly mesenteric ischemia?).  The primary symptom is usually extreme pain following eating, and may also include vomiting and nausea.  It limits a person's ability to eat and/or get nutrition and calories from food so extreme weight loss is also usually present.  An abdominal bruit that varies with respiration may be audible in the midepigastric region.  It has been suggested that MALS is often comorbid with Celiac Disease, POTS (a type of Autonomic Dysfunction), and connective tissue disorders such as Ehlers-Danlos Syndrome (especially if scoliosis is present).  It is also believed to be associated with high blood pressure.

This syndrome is very rarely diagnosed and it's not clear if this is because it actually is rare or if it often goes undiagnosed.  Because it seems most common in young women in their teens and early 20s who are very thin, it is often written off as an eating disorder rather than an actual physiological disorder, despite the insistence of patients that they are not intentionally vomiting and do not want to be limiting food intake.  It is said that about one third of cases are diagnosed at autopsy.  Testing for MALS is usually done with imaging studies, including CAT scan, MRI, and ultrasound (a test called a mesenteric duplex ultrasound to check blood flow through the celiac artery and compression of the celiac plexus.).  Treatment is surgery to stop the compression from happening.  In adults, there can be the complication that the artery remains compressed even once released, probably because it's been compressed for so long.

This entry in the National Organization for Rare Disorders provides a very thorough and updated summary of the research and treatment around MALS.

There is now a laparoscopic version of the surgery that is being done at Mayo Clinic

This is a presentation of a case series of 47 patients in which surgery was done to correct the compression found in MALS.  It is suggested here that MALS my be neurogenic rather than caused by vascular abnormality as is generally thought.  Also, Dynamic Doppler Ultrasound was used prior to surgery (it is not clear if this was for diagnostic purposes) and the presenter says that this is an accurate test to establish the diagnosis.

Anatomy of the celiac artery

SMAS and MALS- true syndrome or fallacy?  (spoiler alert- they are real)
This is a presentation that was given at Stanford medical school and is very informative.

SMAS stands for Superior Mesentery Artery Syndrome and also involves compression that leads to extreme pain.  Symptoms are similar to those of MALS, mostly extreme abdominal pain, vomiting, nausea, etc.  SMAS mimics a bowel obstruction and can make a person physically unable to eat so can be fatal.  Similar to MALS, it is often misdiagnosed as an eating disorder.  In this case it's the duodenum that is being compressed (the first part of the small intestine) that is compressed between the Superior Mesentery Artery (SMA) and the aorta.  The left renal vein can also be compressed which leads to a kidney condition called Nutcracker Syndrome.  SMAS is thought to be caused by dramatic weight loss resulting in loss of fat in the fat pad between the artery and duodenum, which changes the angle of the SMA to aorta.  The angle is usually about 45 degrees (38 to 56), but in SMA it is under 25 degrees and can be as narrow as 6 degrees (it's usually 10 degrees or less).  The distance between the SMA and the aorta is usually 10-20 mm, in SMAS it is 2-8 mm.  Many people have the narrowed angle but do not have symptoms, symptoms of obstruction must be present to have SMAS.

SMA Syndrome on the show Mystery Diagnosis Part 1  Part 2  Part 3

The SMAS entry on the NORD site is very good.

This is a video of a doctor reviewing a CT scan looking for SMAS.  It can be helpful to have an idea of what some of the tests are looking for and why so that as a patient you can ask the right questions to know if your scan was properly reviewed.

This same mechanism can also pinch the left renal vein which is returning blood to the heart from the kidney. This causes blood to back up in the left kidney which in turn causes renal hypertension. This causes left flank pain and blood in the urine. It is diagnosed by ultrasound, measurement of the blood flow rate, and measurement of the angle between the two arteries. Treatment focuses on gaining enough weight to cause the angle between the arteries to widen again. This helps because there is a pad of fat between the arteries that is believed to help hold the angle open and the compression seems to occur when this fat is lost. Surgery is also available.

Chronic mesenteric ischemia is a lack of blood flow to the intestines.  This seems to be the same as the mechanism that causes both MALS and SMAS.  This is usually worsened when a person eats. Symptoms occur because the body needs more blood for digestion than it can get from arteries because they are partially blocked.  When this happens in the long run the patient can lose a lot of weight and become malnourished.  Primary symptom is pain, usually after eating when trying to digest.  This can be worse after eating foods that are harder to digest, such as solid vs liquid foods or high fat meals.  Some foods may be more problematic than others and this seems to vary a lot between people.  Treatments can be divided into 3 categories- medical management (treatments that reduce symptoms, changing risk factors that cause the disease, and preventing exacerbation of the symptoms).  The second group is minimally invasive treatments (endovascular options), and lastly surgical treatments.  Risk factors are generally the same as those for coronary artery disease (high blood pressure, diabetes, high cholesterol, etc) as well as chronic kidney failure.  Hugh blood pressure is a major factor.  Initial tests include either ultrasound to assess blood flow, or a CT angiogram which can assess blood flow in the aorta and it's branches.  The most common vessels implicated include the Superior Mesenteric Artery, the Celiac Artery, and the Inferior Mesentery artery.  Angiogram may also be done in which dye is injected into the abdomen via a peripherally inserted catheter so that blood flow can be seen over time.

Tuesday, February 26, 2019

The Neurological System- Relevant Symptoms, Conditions, and Disorders

The Following are symptoms and disorders of the neurological system that can occur with people who have the constellation of conditions and diagnoses that I and my family do.  The point of the list is not for us to diagnose ourselves, but rather to be aware of the possible connection between symptoms that we are having and our neurological system to help guide efforts to diagnose and treat the symptoms.  Some of these are considered controversial (in the sense that some doctors and other experts aren't convinced that they exist) so keep that in mind if discussing them with a doctor, but I included them because I have found knowledge of "controversial" things to be very helpful in getting appropriate care.

About the Brain and Neurological System:

There is still so much that is not known or well understood about the human brain and nervous system, how it works, and what can go wrong.  This leaves many people with significant neurological problems without much guidance or treatment.

NOVA "Secrets of the Mind"  (phantom limb pain, blindsight, etc)

Daniel Tammet TED talk "Different Ways of Knowing"

Anatomy Zone brain videos

What Does the Brain's Frontal Cortex Do? (Professor Robert Sapolsky Explains)

Specific Symptoms, Disorders, and Conditions:

Absence Seizure (aka Petit Mal Seizure | Epilepsy)

Alice in Wonderland Syndrome


Auditory processing problems

Cervicogenic Dizziness

What happens when you have a concussion?

Dilated pupils

Dysautonomia ("Faces of Dysautonomia" awareness video)
Common symptoms of Dysautonomia from MedicalNewsToday include:
Difficulty standing, dizziness, vertigo, fainting, fast, slow or irregular heartbeat; chest pain, low blood pressure, problems with digestion, nausea, visual disturbances, weakness, fatigue, breathing problems, anxiety, mood swings, tremors, disordered sleep, frequent urination, difficulty regulating body temperature, problems with memory and concentration, poor appetite, and sensory sensitivities (often to sound and light).

Hepatic Encephalopathy

Hepatic encephalopathy


Impostor Syndrome

This is What Mania Looks Like


Nystagmus epilepticus


OCD- Pure O: Thinking the Unthinkable (Extreme OCD Documentary) 



Peripheral neuropathy



Central Sensitization Syndrome (and chronic pain)