Monday, March 11, 2013

Are Food-Allergy Parents At War With Their Doctors?

My husband and I have often questioned whether our son has the best allergy doctor. Our son sees one of the noted specialists in our urban area. By everyone's assessment, the man is brilliant. He specialized in pediatric food allergies and is clearly knowledgeable in that area.

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?

When you come right down to it, doctors can offer us various diagnostic tests that seem to have less and less meaning as the years go by, prescriptions...and their advice. Once our children are diagnosed, we're basically going back for the hope and the crystal ball, even though every year's "Will he outgrow?" question from us is inevitably answered with "We just don't know."

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?

Juxtaposed against all this is our doctors' opinions. There seemed to almost be a tone of blame to some of the reports and tweets from the AAAAI meeting about current clinical trials. Drop-out rates are very high — often 20 to 30% of patients. For the patients who stick it out, one missed maintenance dose (even when it happens because of illness) can cause a reaction and relapse back to very low levels of allergen tolerance. Do our doctors believe food allergy patients just aren't trying hard enough?

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.)

The current running through both sides of the river is judgment. Do our doctors believe us? Do we, as patients, listen to them? Should we always listen to them, when it often seems they know less about how to deal with food allergies than we do? Why do they keep doing scratch/RAST testing on tons of things and handing us results with no explanation of sensitization vs. true allergy? Why don't they help us with our day-to-day lives? Our children's mental health? Stand up for us with schools?

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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