Tuesday, March 19, 2019

Scary Stuff

My six-year-old nephew, Carter, has a host of food allergies: peanuts, tree nuts, dairy, egg, wheat, soy, chicken, shellfish, rice, beans, corn, and probably more foods I can't think of off the top of my head. Sadly, unlike Will, Carter has not had the benefit of a proactive allergist who cares as much about improving quality of life as they do writing prescriptions for epi-pens.

That's not to say my sister, Sara, and her husband, Jeff, haven't done absolutely everything in their power to keep Carter safe. The problem is that the allergists available to them in the greater Peoria, Illinois area are simply not as good as the allergist we have here in College Station, Texas. (The allergist we had in Ann Arbor, Michigan was also not as good as our allergist here. I truly believe that our move to College Station changed the course of Will's life.) The testing, protocols, action plans, and treatments available to Carter simply don't measure up, in terms of quality and quantity, to those available to Will. The negative? (Or, one of the negatives...) This lower standard of care could have led to Carter's death. The positive? Because of what we have learned through the higher standard of care Will has received, we prevented this from happening.

Will had a negative skin test for peanuts once. When we received this result, Will's allergist retested, making sure the skin was fully exposed to the allergen, and found that yes, in fact, Will was still wildly allergic to peanuts and the first test had been a false negative. If the retest had been negative, the next step would have been a blood test. If the blood test had been negative, the next step would have been an in-office peanut challenge to determine - in a safe and controlled environment - that the allergy had disappeared and Will could safely go home and eat peanuts. I know false negatives happen. I know blood tests are more predictive than skin tests. I know to NEVER introduce a food to which someone has been allergic at home. I know all of this - how this process works and why it is so highly regulated - because we've gone through it with Will, multiple times.

A skin allergy test is used to assess allergies by provoking a small, controlled reaction on a safe area of the body, usually the forearm or the back. 

A blood allergy test - a radioallergosorbent (RAST) test - is used to assess allergies by detecting IgE antibodies in the blood.

Carter has been allergic to peanuts since his first allergy test nearly five years ago. While it is possible to outgrow a peanut allergy, children rarely do so; an allergy to peanuts, more often than not, is a lifelong sentence that gets worse with any/each exposure. During a recent appointment, Carter's allergist used a skin test to check the stats of his peanut allergy. Apparently Carter's skin test came back negative, meaning his back did not show signs of reacting to the allergen. But instead of sending Carter for a blood test or scheduling a peanut challenge to confirm this extremely unlikely change in status, he sent Carter and Jeff on their way, telling Jeff as he left that he could start feeding Carter peanuts at home. Jeff asked if they needed a follow-up appointment and the doctor said, "no". Jeff asked if they should come in for a food challenge and the doctor said, "we don't do those".

Sara texted me the good news that afternoon.

"Carter has outgrown his peanut allergy!!!"

My response wasn't what Sara expected.

"PLEASE do a blood test or an office challenge before you feed him a peanut."

I explained why, and Sara agreed to call the allergist's office and ask for a blood test.

The RAST blood test measures the amounts of antibodies in the blood. Simply speaking and in most cases, the higher the level of a particular allergen's antibody in the blood, the more severe the allergy. How the test is scored is broken down below:

  • IgE level < 0.35 = no detectable allergen antibodies (no allergy)
  • IgE level 0.35 - 0.69 = low level of allergen antibodies (slight allergy)
  • IgE level 0.70 - 3.49 = moderate level... (moderate allergy)
  • IgE level 3.50 - 17.49 = high level... (significant allergy)
  • IgE level 17.50 - 49.99 = very high level... (severe allergy)
  • IgE level 50.00 - 100.00 = ultra high level... (very severe allergy)
  • IgE level > 100.00 = extremely high level... (extremely severe allergy)

Carter's level for peanuts? Above 100. ABOVE 100.

Sweet Carter
You can figure out what would have happened if Sara and Jeff had taken the allergist's advice, right? Because I'm not sure I can type it out here.

I spent an entire day the following week searching for better allergists in Illinois, and found a few I think might work for Carter. (Sara and Jeff could certainly do this, but my mom and I were on a mission and wanted to take that task off of their plate.) It is appalling to me, especially given the size of the Peoria metropolitan area, that in order to find a competent allergist they will have to drive to the Chicagoland area or Bloomington-Normal.

It is also appalling to me that any allergist could behave so carelessly - so dangerously - and put a child's life in jeopardy.

I am, again, so grateful for our fastidious yet proactive allergist here in College Station. I am grateful for the many similarly motivated allergists who came before ours, those who dreamed up treatments and therapies to improve - and potentially save - the lives of people with life-threatening food allergies. And I am grateful we are one step closer to finding one of these allergists for my sweet President Carter.

No comments:

Post a Comment