Testing Foods and Meds

I was reminded quite keenly the other day why testing foods and meds that my kiddo takes is done the way that we do: slowly, in steps, with time to spare, and very attentively. Testing foods and meds (and any other items!) is critical for some complex kids and individuals with sensitivities to ingredients. The following post is how my family avoids becoming a statistic.

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I’d ever-so-slightly relaxed my testing method. Doctors had assured me there’s a line past which a parent can be too careful even when I explained my process and why my family started following it. That diligence is what’s kept me successful.

The food reactions I’d later come to understand hadn’t completely sensitized yet. So maybe I was helicoptering too hard, though I’ve 9.9 out of 10 times always been justified.

Thing is, it’s not about whether a parent can be too careful, and it’s not about helicoptering too hard — not when it’s your child’s own body calling the shots. If the body reacts, it has reacted. That’s the bottom line. So listen to what it’s telling you.

Slippery Elm Slope

So, as mentioned at the beginning, what event was it that reminded me of the very importance of testing foods and meds?

In January 2017, we tried Zarbees Cold & Cough syrup on several friends’ recommendations. They all used it for their kiddos, so there was a wide range of acceptance by several children. But a 5mL dose of that Zarbees put Aubby in the hospital for two days.

She’d had a hoarse cough and a pretty sore throat that week. Ordinarily, I felt that Tylenol should be enough. But she wasn’t two years old yet and I felt bad for her to be coughing so hard.

In under 15 minutes of trying Zarbees, the inactive ingredients of which contained Agave Syrup and English Ivy, we had to get to the ER. In under 30 minutes since the dose, she was that-close to being intubated — the doctors had a tube in hand. The Epi, or Benadryl, or the breathing treatment she’d had… one of them managed to work. In just the nick of time.

Fast-forward to February 2020.

Slippery Elm is one of the supplements that’s been widely used by others in the support groups I’ve scoured, and a couple friends. It’s meant to coat the stomach, and I anticipated it’d have a similar effect as the non-compounded Prilosec she reacted to.

It being my daughter, however, her “zebra” nature took over…

Upon attempting it for use in targeting reflux, it turns out that Slippery Elm naturally grows alongside English Ivy. When she started having an immediate reaction to skin contact on her cheek that reminded me too well of that first anaphylactic experience, I did a search on “English Ivy + Slippery Elm” and found that information, which explained why Agave Syrup had shown itself safe in the meanwhile.

English Ivy, however, was not listed on the Slippery Elm bottle. I wouldn’t have expected it to be, as the supplement ordered wasn’t supposed to be a mix of anything but powdered Slippery Elm alone. Grown together, I can easily understand how they might cross react. But now I know she is reactive to English Ivy, Slippery Elm, or since they were present at different times, both. Though these days I’m sure there were corn derivative issues too.

“Should’ve listened to the doctor! You’re stupid for testing that on your own!”

Yes, I know doctors are the ones to listen to. Unless they do as numerous care professionals have done and dismissed my child and family as a lost cause due to her diagnosis, which in the medical community is considered “incompatible with life”. So what then?

I’ll let you in on a not-so-secret secret: That’s how “Medical Moms” and “Dr. Googles” are made. Self-advocating. And maybe we have dumb questions sometimes, but we’re busy putting together the pictures doctors already have more knowledge about. So no question is dumb; not knowing isn’t a crime. Where mistakes come is from not clarifying in order to do better.

In some cases, important parts of a full necessary answer might not be divulged.

Or some cases might be “slow coded” or a DNR placed without knowledge in order for a doctor to accomplish what they feel is more “compassionate” than helping us — even when operating with outdated medical context.

Or in other cases is overlooked or ignored due to stubborn tradition that now roots scientific Western Medicine in 1758 when Rudolph Virchow set the four humors aside for germ theory, and medicine advanced as we recognize it today.

Modern Medicine is not that old. Parenting is older. Gut instinct is older. Carefully testing foods and meds for safety’s sake is older. Modern allopathic medicine has its place, but so do “alternative” care methods some still prefer to lump together as “pseudoscience”.

Since 2016, even the U.S. Department of Veterans Affairs has a challenging but successful Whole Health pilot program flagshipping at eighteen sites:

As VA shifts from a health-care system focused primarily on treating disease to one guided by a personalized health plan that considers the physical, mental, emotional, spiritual and environmental needs of Veterans, the Whole Health System acknowledges that health care involves more than the physical human body. 

VA Announces Whole Health Flagship Sites: Personalized Plan Puts Veterans in Control of their Health Care — May 15, 2018, 09:59:00 AM

With Complementary Integrative Health (CIH) approaches being good enough for United States veterans — including chiropractic care, meditation, Reiki, Tai Chi, yoga, physical therapy, massage, acupuncture, music therapy, health counseling, and other modalities — it’s good enough for other families too.

And, truly, allopathic medicine needs to get on board with embracing complementary integrative healthcare if it’s going to reduce care costs and serve more patients.

On the other end of treating terminal diagnoses, individuals are slammed with so many interventions that the head of a diagnosis cannot be distinguished from its tail.

The impacts of interventions themselves are no small thing, often having to hurt to heal as happens with surgeries or can be as straightforward as draining an abscess. Surgical scenarios are what some professionals prefer to avoid for “ethical” reasons, but they miss the point of therapeutic intervention entirely. Which leads to why “incompatible” and “impossible” becomes the norm for some genetic/autoimmune conditions.

Also, supplements and vitamins are no more dangerous than over-the-counter selections of headache medicine when used appropriately. Doing the research on the extremes of therapeutic use including symptoms of deficiency and toxicity, and how an item operates in the body, and the item in question most likely won’t be abused.

Finally, pacing is essential. Without measured steps and a repeatable process, details can be missed and use can become more dangerous than expected.

Not Their Problem

My next memory is a jump back later that same year to September/October 2017. My husband and I each missed a week of our PTOs/available sick time to stay with Aubby during two planned hospital admittances over the course of three weeks.

We thought we were working with her doctors to address what we thought at that time was severe reflux vomiting that was giving her stomach bleeds. The outcome of those hospital admittances was that, as a family, we were ignored.

The first four-day stay, it was two days before any doctor came to see her. She’d had an aspiration episode at the outset and received a deep suction that cleared it. That visit was discharged without resolution of her reflux, but the reasoning for why she was kept for almost a week was said to be for observation.

The second four-day stay, no doctors came until the final day and only after I felt forced to demand them. Until that point, an intern with glaringly incorrect information regarding my daughter’s care was sent to me three times over, and still no doctor.

When I lost my temper, I demanded to meet with ALL of her care providers for that stay. They managed to make that happen. My husband and I met with her potential surgeons, GI doctor, nurse, and so on, all in a small meeting room together.

We both noticed initial sniggering tones at the intern I’d torn into, who was acting like a puppy that had gotten into trouble. But then Surgery proceeded to inform me that they “never intended” to replace the Nissen that had come loose of her original feeding g-tube placement.

Why they chose not to share that information three weeks before we lost income and days traveling and discomfort being admitted only to receive no care instead of the impression we were under, I’ll never know.

Surgical refusal to treat her reflux — reasoning including her “atypical anatomy due to Trisomy 18” — is what led to me researching her needs myself. Anything nonsurgical that I can address to improve or prevent surgery, especially in the face of “no more answers” for treatment, I inspect.

Finding Alternatives For Reflux

I only include those memories to provide background for why I “went rogue” and looked into complementary reflux care for my daughter. As I’m not a licensed medical doctor, I don’t pursue alternative methods lightly. As a medical mom and independent researcher, I’ve pursued them from necessity.

Before my husband and I left that meeting, I queried whether probiotics would be helpful. That room of doctors said no. But in the weeks following our return home, my research led me even then to SIBO and we did find probiotic use very helpful in decreasing excess stomach gas and bloating.

Since then, she was officially treated for SIBO in September 2019 and her gut favorably responded.

What I mean by “favorably responded” is that on a course of Flagyl, her reflux WENT AWAY for the duration of that antibiotic. That showed me that REFLUX IS AN INTESTINAL PROBLEM. Not a stomach one as a previous endoscopy suggested.

I’m still unraveling what other measures may be used to support/heal reflux, especially since she started having swelling reactions to medications containing corn derived excipients/preservatives. But that realization put me on a closer path to helping her.

Two improvements for reflux and GI health have come, however:

• Entergro Flourish, a LIVE probiotic, has been extremely useful.
• And 4 oz of George’s Aloe daily, given an ounce at a time between meals, has greatly increased her comfort.

And the only reason we know she’s improved on the probiotic and aloe, as with other vitamins, supplements, and medications she’s used, is through careful testing.

How To Test

Now that you know the background and why we test the way we do, I can outline the way my family approaches testing new foods and meds.

This is, however, the best method we have come to use at home due to Allergy’s continued utter lack of interest in my daughter’s safety. She’s been hospitalized for reactions previously that nearly required intubation, but gastrointestinal distress has also put her in an emergency room on numerous occasions for allergic intussusception.

As systemic reactions are common to other corn reactive individuals like her, who are just as susceptible as people with peanut or other allergies, I don’t understand the disregard of so many allergists.

Supplies for testing foods and meds:

• Item to test
• Q-tips or other safe, clean applicator
• Filtered safe water (safe water like Crystal Geyser poured into a glass, ProPur filtered shower head, and/or Zero filtration pitcher, etc.)
• Safe towel (corn safe material like organic cotton)
• Rescue medications (compounded safe Benadryl, Epi-pen, etc.)
• A buddy if you need someone close (or potentially anaphylactic individuals have been known to test themselves in a hospital lobby or other public place in order to be near emergency health services)

Loading the test item:

1. Dunk one end of Q-tip in water.
2. Dab the wet Q-tip on the towel so it’s damp and not dripping.
3. If the test item is:
   • liquid, use a dropper to apply to the Q-tip without using water unless it needs more diluted;
   • powdered, swirl the damp Q-tip in it;
   • creamed, give the Q-tip a light turn in it to coat it lightly;
   • scented, take extra caution with the Proximity step.

How much to use:

With each step, we BEGIN with the smallest amount possible: a single grain to maybe 3 grains, 1 drop, a pinhead smear, a drop’s worth of scent.

Only double the amount and retest NO LESS than every 30 minutes. (The only reason I say 30 minutes minimum is because when we were threatened by GI that she would be hospitalized on account of her “restricted” diet — which has been reviewed by theirs and other dietitians/nutritionists to assure nutritional value — and we had to go faster to find safe foods. Luckily, my theory on changing brands was correct.)

Keep testing in slightly larger amounts until reassured — either the test will fail or it will not appear to react. If it appears not to react, then either the item’s fine, might eventually bring on a buildup reaction, or will be useful for the length of time it’s needed (at which point, levels indicating an item has reached “enough” will occur).

If you utilize my family’s method in any way as part of your health protocol, please refer back to to this section as a refresher for each step.

Reactions I watch for:

• Hyperactivity, especially paired with facial flushing
• Insomnia
• Redness, swelling, tingling, numbness, etc. that may be more pronounced in any way
• Rhinitis/sinusitis, sneezing
• Migraine in the week following intake
• Eye rims redden, or eyelids get more purple/red hued and are less open with or without swelling
• Edema that may be visible or identifiable by skin “softening”
• “Bluing” at nares (on either side of nose to mouth crease)
• Paleness, especially with accompanying allergic shiner, possible sweating
• Abdominal distension, gas retention, reflux
• Nausea and/or vomiting
• Any swelling, particularly at jawline and/or tongue
• Jaw tightness
• Fingertips redder and firm
• “Tantrum” behavior, especially if accompanied with “guarding” (slouching inward with arms near or across stomach area)
• “Guarding” that indicates gastric discomfort or pain
• What appears to be “constipation” in the following week actually being an ileus factor due to GI slowdown from allergens

Photograph to compare:

• Before the test
• 15 minutes into the test
• 30 minutes into the test
• 45 minutes into the test
• After the test

After taking the necessary photos, I compile a comparison set of up to 4 photos using PhotoCollage or other free phone app.

For example:

Photos need to be taken at the same time, angle, and lighting for best results. At the very least, two to only compare matching angles.

I also use this photo comparison method to compare time points. For example, if I want to see a difference a week later, I use the current photo and compare it to the week prior. Or month, or year, whatever time I need.

Reaction arcs (systemic/gastric impact)

• Can be immediate
• Can range half hour segments
• May range 5 hour arcs
• After effects can last up to 2, 4, and even up to 10 days

The Testing Sequence

The following are the points of exposure at which we test, listed in the order we test them.

Proximity

This is to test airborne reaction. Begin by putting the test item about 4 feet away at torso level (like on a table nearby).

Someone unable to tolerate it in the room may well react earlier than 4 feet. Be aware that this is possible.

Someone less airborne sensitive will not react to Proximity and might allow the item to be tested by Contact. But test Proximity by starting at least 4 feet away.

The closest Proximity test would be to inhale.

Forearm

This is to cautiously test contact reaction. With the Slippery Elm, I made the mistake of skin testing with the cheek first. Due to that experience, I now include the Proximity and Forearm steps.

To test on Forearm, use the inside, more sensitive, thinner skin located between wrist and inner elbow.

Please refer back to “How much to use” as a refresher for this step.

Cheek

This is to test Contact reaction. It’s the closest point before applying a test item to an area it can be consumed. Be careful to note level of cheek flushing before testing on cheek.

Test only one cheek first. This was another Slippery Elm mistake I made; it was only a few grains, but I didn’t wait long enough (15+ minutes) for the first cheek to really react. Since I can usually discern her reactions as more immediate, when I applied the same Q-tip that just had those few grains on it to her other cheek it blew her into a full reaction.

Then test both cheeks as a separate skin test challenge after the first application has passed.

Please refer back to “How much to use” as a refresher for this step.

Lip

This is the beginning of testing Ingestion. Redness, swelling, tingling, numbness, etc. may be more pronounced. Be alert.

Please refer back to “How much to use” as a refresher for this step.

Lip With Saliva

Saliva makes the impact a bit stronger because dry test items are less absorbent. Be alert!

Please refer back to “How much to use” as a refresher for this step.

Tongue

This means that skin testing was favorable. This is the first official ingestion.

Please refer back to “How much to use” as a refresher for this step.

Proceed with extreme caution in testing.

Proceed with caution regarding buildup reactions over 3 weeks.

Ingestion

This is when tongue testing has been favorable.

Please refer back to “How much to use” as a refresher for this step.

Proceed with caution regarding immediate reactions in the following week, and buildup reactions over 10 weeks.

The above may seem extreme, but it’s the method we use because it saves ER trips.