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, October 26, 2018

Notes for Pharmaceutical Drugs and Treatments

These are bits of information and research regarding pharmaceutical medications that are relevant.  This post includes the following sections:

General Drug Info
Drug Shortages
Other Pharma Drugs and Products


How does your body process medicine? - Céline Valéry (TED ed talk)

LiverTox - Clinical and research information on drug-induced liver injury (page on NIH website)

The Placebo PhenomenonAn ingenious researcher finds the real ingredients of “fake” medicine.


The FDA keeps a (relatively) updated list of meds that are in shortage here.

The ASHP also keeps a drug shortage list here.

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."

Epi pen supply information


Side Effects From Drug Classes:

Serotonin Syndrome (aka "Serotonin Storm" or "Serotonin Toxicity") can occur when a medication (or combination of meds) is given that causes a person's serotonin level to become too high.  This can be a chronic or acute state, and the symptoms vary from mild to fatal, depending on the cause or source of the excessive serotonin as well as the individual's genetic makeup (loss of function mutations in the enzymes that break down excessive serotonin, such as COMT and MAO, can make people more prone to develop Serotonin Toxicity).  Symptoms can range from mild (such as feeling too hot, diarrhea, nausea) to fatal (from seizures, cardiac events, or coma).

The Worst Side Effect You've Never Heard Of: common drugs can trigger rare and sometimes deadly Stevens-Johnson Syndrome
"Zenkner, now 20, was a victim of one of the most frightening drug side effects you've likely never heard of: Stevens-Johnson Syndrome (SJS), a rare but devastating condition where the top layer of skin and mucous membranes, such as those covering the eyes and lips, blisters and peels off in waves. It can even affect the internal organs like the lungs. Some patients go blind. Some wind up with severe scarring. Some patients die."

Psychiatric Drugs and Violence: A Review of FDA Data Finds A Link
"Moore and his collaborators concluded: "These data provide new evidence that acts of violence towards others are a genuine and serious adverse drug event that is associated with a relatively small group of drugs. Varenicline, which increases the availability of dopamine, and serotonin reuptake inhibitors were the most strongly and consistently implicated drugs."


Allergy medications:

Cyproheptadine (Periactin) is an antihistamine that can be used to treat serotonin toxicity and is used to increase appetite in some people.

How I almost killed my mom with a simple anti-itch pill

Dementia 'linked' to common over-the-counter drugs


How Does Xanax Work?

Anxiety and sleeping pills 'linked to dementia'

Clonidine is in a class of medications called centrally acting alpha-agonist hypotensive agents.

Clonidine treats high blood pressure by decreasing your heart rate and relaxing the blood vessels so that blood can flow more easily through the body. Clonidine extended-release tablets may treat ADHD by affecting the part of the brain that controls attention and impulsivity.

Fluoroquinolone antibiotics:

FDA warns about increased risk of ruptures or tears in the aorta blood vessel with fluoroquinolone antibiotics in certain patients 
"Health care professionals should avoid prescribing fluoroquinolone antibiotics to patients who have an aortic aneurysm or are at risk for an aortic aneurysm, such as patients with peripheral atherosclerotic vascular diseases, hypertension, certain genetic conditions such as Marfan syndrome and Ehlers-Danlos syndrome, and elderly patients. Prescribe fluoroquinolones to these patients only when no other treatment options are available. Advise all patients to seek immediate medical treatment for any symptoms associated with aortic aneurysm. Stop fluoroquinolone treatment immediately if a patient reports side effects suggestive of aortic aneurysm or dissection.

We communicated safety information associated with fluoroquinolones in July 2018 (significant decreases in blood sugar and certain mental health side effects), July 2016 (disabling side effects of the tendons, muscles, joints, nerves, and central nervous system), May 2016 (restricting use for certain uncomplicated infections), August 2013 (peripheral neuropathy), and July 2008 (tendinitis and tendon rupture)."


The effects of moclobemide alone in overdose are minor, even with massive ingestion. However, moclobemide overdose in combination with a serotonergic agent (even in normal therapeutic doses) can cause severe serotonin toxicity.

A hypertensive crisis can result from ingestion of tyramine-rich foods in conjunction with monoamine oxidase inhibitors (MAOIs).


more on this from The New York Times:
Drug for Adults Is Popular as Children’s Remedy

Spotlight Finally on Miralax (Response to above article from NYT)

"Back in December of 2011, the FDA placed MiraLAX — a polyethylene glycol-containing blockbuster drug marketed by Merck & Co — on its Adverse Event Reporting System (AERS) in connection to “neuropsychiatric events.”

Besides MiraLAX, this warning also applies to Movicol, Dulcolax, Colyte, Colovage, Co-Lav, Clensz-Lyte, ClearLax, GoLYTELY, GaviLyte C, GlycoLax, Go-Evac, GlycoPrep, E-Z-Em Fortrans, Halflytely, Lax-a-Day, LaxLyte, MoviPrep, Macrogol, NuLytely, OCL, Peg-Lyte, Prep Lyte, Softlax, TriLyte, and all other brands with Polyethylene Glycol 3350 (PEG for short) as their active ingredient. The “3350” qualifier refers to the molecular weight of this particular variant of PEG."

Researchers Examine Why Tylenol Affects Empathy (from NPR)


Risperidone use in children with autism carries heavy risks

SSRIs (Selective Serotonin Reuptake Inhibitors):

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

"Because Po and PMP22 play an important physiological role for the maintenance of the multilamellar structure of the myelin of the PNS, the present observations might suggest the utilization of neuroactive steroids as new therapeutically approaches for the rebuilding of the peripheral myelin."

Teriparatide Treatment for Osteoporosis (Forteo and Tymlos)

Pressor agents:
Book chapter (?)
MAO involved in blood pressure

PPIs (Proton Pump Inhibitors:

Popular heartburn drugs linked to gradual yet 'silent' kidney damage
More on this:
Popular Acid Reflux Drugs Are Linked To Kidney Disease Risk (piece from NPR)
Acid reflux medications may increase kidney disease risk