For Parents and Caregivers
I personally have neither birthed nor adopted anything that didn’t come with a rabies certificate. I also don’t have the kinds of degrees that would qualify me to give parenting advice. I can’t imagine the pressure that must come from the weight of complex decisions for another human falling on your shoulders.
I do, however, know a number of parents who deal with very legitimate fears about their childrens’ cases, who advocate, and even fight (as, sadly, they often have to) tooth and nail for appropriate care for their children, and who still develop feelings of guilt and inadequacy through this process. So I tell parents these things hoping they might at least avoid some share of this (logically unwarranted, but seemingly inevitable) guilt.
1) Take seriously the “I don’t like to eat that’s” (These are often triggers. A child is typically unable to communicate why these things make them feel bad, but kids’ instincts about what they’re reactive to are often accurate.), the not feeling rights, the apparent anxiety (Most kids with actual mast cell disorders are diagnosed with anxiety, or just with autism. Terms like “idiopathic panic attacks” are, in my humble opinion, largely undiagnosed MCAS.), the avoidance behaviors, the spectrum flares (neuroinflammation) and coping mechanisms, and your small human’s general feelings and observations about their bodies. I recommend you try to teach your child to “check in” with their body and talk about how they are feeling, identifying correlations between foods eaten, activities engaged in, emotions felt, and so on.
2) Your child may have special considerations which prevent them from safely playing your favorite sport, for example, or from engaging or excelling in other activities and life paths you expect to be "good" for them. Many parents of symptomatic children, particularly those on the autism spectrum (which comprise a high percentage of these patients) have particular anxieties about their children finding the “right” activities, friends, and so on and can unintentionally miss many quiet leanings and interests in favor of what they expect (often from their own experiences) will be meaningful to their children. Members of this particular population, whether on the autism spectrum or not, are frequently alarmingly bright, self-aware, and resourceful. So try to encourage your child to find things they enjoy, even if these activities are totally counterintuitive to you. Remember, your child may not share your perspective of needing to do these things a particular way (or what you imagine to be “well”) and may find very rewarding pursuits and creative ways to thrive in settings you could not have imagined for them.
3) This is often a significant challenge, but a vitally necessary one to face: If someone in your circle is dismissing any element of your child’s care plan (“You’re overreacting!” “You’re babying them!” “Mommy/Daddy’s being a little worrywart, aren’t they?”), refusing to accommodate their triggers adequately (“I’ll just use a LITTLE perfume/this spice/this food” or “I had to use some detergent- she likes the smell on her blankets!”), or gaslighting them about their symptoms (“You don’t reallly feel sick now, do you? What if I give you some ice cream?”), stop any contact between your child and this person immediately and at least until you are certain a complete behavioral change is assured, and then monitor any further contact very closely. Many family members, especially those closest to young patients (including parents), are cognitively unable to accept that anything might be “wrong” with the child and are inclined to deny symptoms or reject a diagnosis particularly of unknowns. You would be amazed by the number of grandparents who intentionally poison their grandchildren in an attempt to prove their perfect little angels are, in fact, perfect and healthy, that they could not possibly be “allergic” to some trigger (this is actually frequently how children with these disorders are permanently harmed or killed) and my personal opinion is that simple, garden variety gaslighting can be even more damaging in the long run. Put a hard stop to these “nice people” threats before you need a restraining order. (Really.)
4) Do the best you can not to poison your child. If you are the party described in #3 or are one of the just-tough-it-up, neurotoxin-spraying people of the but-I-grew-up-with-lead-paint-and-I’m-fine generation, you may not be in a place to make critical medical and lifestyle decisions for a particular, physiologically vulnerable child faced with the myriad of more complicated environmental factors of today's world. If you are unable to change your behaviors and, more importantly, your attitude (I don’t mean this condescendingly. Many parents unintentionally gaslight their children, and this is likely the most medically—not just psychologically—harmful behavior a loving parent can inflict.), your most loving and most difficult parenting choice may be to cede your child’s care to another.