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, December 8, 2018

Simple Vegetable Sides and Salads

Below are some simple recipes and techniques for coking vegetables.

Baked potatoes- are done when the internal temp reaches 205 degrees.

Spaghetti squash- Cook by cutting the squash in half, placing it cut side down on a rimmed baking sheet, and baking for 45-50 minutes at 350 degrees.  Alternatively it can be baked whole, just prick the skin with a fork.  The squash is done when it is tender and a fork goes into the flesh easily.  Scoop out the seeds and stringy parts that are with them.  The remaining "noodles" can be scooped out onto a plate or eaten out of the shell.

Oven Roasted Veggies- Preheat the oven to 500 degrees, move the oven rack to the bottom 1/3 of the oven, and put the pan into it to preheat as well.  Cut a variety of root vegetables such as potatoes, parsnips, carrots, beets, and radishes Into chunks all roughly the same size.  Drizzle them with olive oil (and other things as well, such as balsamic vinegar) and salt and pepper.  Spread them out in one layer on the preheated pan leaving space between them (if they are too crowded they will steam and not be crispy).  Bake 20 to 25 minutes.

Fall Rice Pilaf- Cook 1 cup of a mix of brown and wild rice in broth (turkey or chicken works well).  Saute 1 sliced large leek, several diced ribs of celery, about 1/3 cup of diced parsnip, about a 1/4 cup of dried cranberries, a generous amount of rubbed sage, and chopped chestnuts if you can eat them.  Let cook for 5 to 10 minutes to allow the flavors to meld.

Russian Tomato Salad- In a medium bowl, combine 1 thinly-sliced sweet onion, 2 to 3 chopped large tomatoes, sour cream or yogurt, salt and pepper to taste, and chopped dill if you want.  



Sunday, November 25, 2018

Exploring New Ingredients for Cooking

These days many adults have grown up eating instant food such as canned soups, processed packaged foods such as rice mixes and seasoning packets, or if they have learned cooking "from scratch" it involves processed ingredients such as canned broth and pre-made dough.  It seems that not many people regularly cook from actual scratch and for many people this may be a very functional allocation of their time.  While this may (or may not) work well for some people it can make it difficult or expensive to try making dietary changes, as specialized processed foods may be prohibitively expensive, unpleasant to eat, or may be very hard or impossible to get.  Sometimes learning to make an ingredient from scratch (such as broth, mayonnaise, or salad dressing) is a good solution to this dilemma.  Another solution that can actually be quite fun is to learn to use ingredients that you have not worked with before and to learn to cook new types of dishes.  While this can be fun and exciting and very rewarding to do, it can take a lot of learning and adjustment as you get used to new ingredients and cooking methods.  Below is a collection of links that can help make this transition easier.  Or course what is new to one person is the comfort food that someone else grew up with, and will depend on where a person grew up, where their family and friends and neighbors are from, what restaurants and food stores they have had access to, their income, and many other factors.


Fruits and Vegetables:

How To Cut Pineapple Without Waste
Introduction to Persimmons
Buddha's Hand (a type of citrus)
What is Jackfruit and how to eat it
ASIAN VEGETABLES: BEANS, MELONS, MUSHROOMS, AND ROOT VEGETABLES

Grains, Flours, and Their Replacements:

Cassava (Yuca) Types and Preparation

Grocery Shopping and Pantry Staples:




Thursday, November 15, 2018

Simple Breads and Baked Goods (recipes)

All of these recipes are gluten-free.  Some are grain-free, low oxalate, low carb, paleo, keto, etc.  I do not use nuts due to a severe nut allergy

COCONUT BREAD
This is a very simple bread that bakes up quickly like a quick bread.  Honestly it doesn't have the best flavor or texture for a bread, but it is also much faster and easier than most of the more delicious recipes and is very functional.  It is a good bread to use for other recipes that call for baked bread such as croutons or bread pudding.

Ingredients:
6 eggs
1/2 cup butter, ghee, or other fat
2 T honey
1/2 tsp sea salt
3/4 cup coconut flour

Preparation:
-Preheat oven to 350 degrees F.
-Blend all ingredients together until there are no longer any lumps (by hand with a whisk works fine, but this is easier with a food processor or mixer).
-Pour the batter into a loaf pan that has been greased and/or lined with parchment paper.
-Bake for about 40 minutes.


Friday, October 26, 2018

Notes for Pharmaceutical Drugs and Treatments

These are bits of information and research regarding pharmaceutical medications that are relevant:

GENERAL DRUG INFO

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

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

Drug Shortages:

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


OTHER PHARMA DRUGS AND PRODUCTS

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

Side Effects:

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

Benzodiazepines:

How Does Xanax Work?

Anxiety and sleeping pills 'linked to dementia'

MAOIs:

The effects of moclobemide alone in overdose are minor, even with massive ingestions. 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).

Miralax:

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)

IS MIRALAX THE NEXT VIOXX?
"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:

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."

Pressor agents:
Book chapter (?) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502847/?page=1
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

Sunday, October 7, 2018

Working with Chocolate

In the world of homemade candy and treats chocolate stands alone.  While there are many simple and easy recipes that use mostly processed ingredients, if you spend some time learning the techniques of working with chocolate you can learn to create much higher quality candy.

General information and getting to know chocolate:
Tree to Bar || How to Make Chocolate Every Step
Dutch Process Cocoa Powder vs. Natural Cocoa Powder
Paul A. Young Fine Chocolates YouTube Channel (very helpful videos with a lot of information      about working with chocolate)
How to Cook That YouTube channel (Lots of very good "how to" videos for making desserts including many very good videos about working with chocolate)

Tempering and molding chocolate:

Thursday, July 26, 2018

Disorders, Conditions, and Symptoms of the Digestive System

The gastrointestinal system (aka "the GI tract" or "digestive system") includes the entire "tube" from the lips to the anus.  Because it is open to the outside world on both ends, the inside of the GI tract is considered to be outside of the body.  It is a system with many different components and functions and is especially immunologically active because it must protect us from pathogens and other dangerous exposures through what we eat and drink, and for the upper part even the air we breathe.  GI disorders and symptoms are very common among people with ASD, mast cell disease, and some of the other conditions discussed on this blog.  I am including links in this post about both the normal functioning of many of the parts of the GI system as well as the many symptoms, conditions, etc that can arise when things don't work properly.

For a general introduction to the GI tract, the book "Gut: The Inside Story of Our Body's Most Underrated Organ" by Giulia Enders is a great place to start.  This is an interview of her about her book.  The GI tract is still not very well understood and new discoveries are being made about it...it's various functions, what can go wrong, options for treatment and for staying healthy, etc.  For example new organ in the GI tract was recently discovered called the Mesentery.

General information:
Introduction to the digestive system (video series from Anatomy Zone)
Digestive system by CrashCourse part 1     part 2     part 3   
YouTube Channel Gastroenterology 101
The enteric nervous system (the brain in the gut)

Specific disorders, conditions, symptoms, and syndromes:
Burning Mouth Syndrome
Oral Allergy Syndrome (OAS)
Periodontitis

Swallowing disorders
Animation of both normal and dysphagic swallowing
Airway disorders (can have implications for the GI tract)
Dysphagia (disorders of swallowing)
Swallowing Disorders and Achalasia
Laryngospasm: Sudden, Terrifying Difficulty Breathing (Part II: Laryngospasm: Straw Breathing)
"There is some evidence that Laryngospasm is caused by damage to sensory nerves from a virus."
Laryngospasm: What causes it?
Acid Reflux aka GERD (Gastroesophageal reflux disease)

How does the Stomach Function?
Dumping Syndrome (caused by injury to the Vagus nerve from surgery)
Gatroparesis (delayed emptying of the stomach and stomach paralysis)
Cannabinoid Hyperemesis Syndrome
Gastrointestinal stromal tumors (GISTs)
Autoimmune Pancreatitis
Cyclic Vomiting Syndrome
Cyclic Vomiting Syndrome - Kirsten Tillisch, MD | UCLA Digestive Diseases
SMAS (Superior Mesenteric Artery Syndrome)
Obstructed Defecation Syndrome (ODS)
Hirschsprung's disease

More advanced information:

Thursday, June 14, 2018

Organizing, Managing, and Traveling with Medical Supplies

Some of the people who live with the constellation of symptoms and diagnoses that I discuss on this blog are so sick that we require an intensive level of medical intervention that necessitates using, storing, and transporting large amounts of medical supplies.  This can include supplies needed for tube feeding and TPN (IV feeding), central line care, infusions of medicine such as IVIG therapy, oxygen therapy, braces for joint support, and more.  The sheer amount of supplies can quickly become overwhelming but for these supplies to help we need to know what we have so we can avoid running out and also be able to find what we need quickly.  Below are ideas and videos by people with a variety of medical needs showing the systems and tricks that they have found work for them.

Storing and organizing supplies:

 Room Tour (from Cheyanne Perry’s blog Hospital Princess)



Transporting and traveling with medical supplies:

New Feeding Tube and  IV Therapy Tools! | Travel Supplies & Backpacks (from Chronically Jaquie)

PACKING MEDICAL SUPPLIES FOR AN AIRPLANE TRIP (from The Frey Life
My Chronic Illness Travel Essentials