Monday, March 11, 2013
Are Food-Allergy Parents At War With Their Doctors?
At the same time, he gives really bad advice. He's very absent-minded. We spend much of every appointment reiterating our son's allergens, past testing, etc. He's fairly conservative and doesn't (so far) support any of the clinical research treatment options. And, he can be very casual about food challenges, telling us to "go ahead and try it at home", something we were not at all comfortable with when our son was younger.
Should we have shopped for a new doctor? So many other FA parents we know doctor shop — some seem to do so constantly. I know people who have been through four or five doctors and who still conclude that the issue is with the doctors and not their expectations. Are allergists really that terrible, or are we simply expecting too much from them?
Most of us are roped in, of course, by the need for that yearly epinephrine prescription. But...if prescriptions were automatically renewed and health insurance covered other possibilities — say, nurse clinicians, nutritionists, anxiety therapists, food allergy lifestyle specialists (don't you wish there were such a thing?) — would we really choose to spend our hard-earned money each year at the allergist's office?
Food challenges are another area where doctors and patients can walk away from the table with very different ideas about what happened. What constitutes a food challenge "pass?" For many parents, any acute symptom in the next 48 hours, and mystery symptoms for weeks or months later, end up attributed to the food challenge or subsequent food reintroduction. For doctors, if it doesn't show up in the office, it seemingly doesn't count. How does it happen so often that doctors check the PASS box while parents check the FAIL — all while observing the same child? (About 13% of parents whose child passes a food challenge do not reintroduce the food because of real or perceived continuing symptoms.)
On the doctor's side of the river: why aren't parents giving epinephine when we've told them to? Why are parents still giving foods they know cause an allergic reaction? (Remember the Pediatrics study?) Why do they expect so much more from us than medical diagnosis, pharmaceuticals and occasional lab tests?
The river of misunderstanding is very wide. And, even if we're able to eventually build a bridge to better communication, there are often still a lot of bad feelings that have already flowed under.
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