There is a sage expression "A mother is only happy as her least happy child." I've noticed a more recent parenting trend that goes something like, "A mother is happy in equal proportion to her confidence in her child's doctor(s)."
Many parents have a particular anxiety surrounding our children's medical care. Thanks to the Internet, doctors have fallen from the grace of the All-Knowing and thanks to our health care system many parents cannot access the kind of care they would like for their children. And then there is the dark forest of confusion here parents wander uncertain if their child's doctor qualified or perhaps the wrong fit for their family.
My first child enjoyed good health and so I never questioned her medical care. But within a few weeks of my second child's birth in 2002, my son Eden began exhibiting allergic symptoms like eczema and reflux. His first pediatrician misdiagnosed Eden's milk allergy as "Infant Acid Reflux" asserting, "This isn't a food allergy!" when we questioned it as such. Then on to a pediatric dermatologist who told me Eden's eczema was "common" and "unaffected by diet."
After months of Infant Acid Reflux (read: frequent and profuse vomit) I took Eden to his first Pediatric Gastroenterologist who diagnosed him with a milk allergy. That G.I. was our savior for a while. However, before Eden's symptoms had stabilized, he suggested that we re-introduce dairy products into his diet. That first G.I. recited statistics. To a parent already fatigued by her symptomatic child, a statistical citation was the medical equivalent of a hot foaming cappuccino. That G.I. tossed out the statistical probability of a child outgrowing the most common of all food allergies - dairy - within a year. At the time doctors agreed that, if not by a year, the vast majority of milk allergic children outgrow their allergy by age three. However, the studies relied upon did not account for the vast rise in the perseverance and severity of all childhood allergies. Obviously those studies could not have taken Eden's particular health history into account.
Here's a more current statistic: In 2007 a study at the Johns Hopkins University School of Medicine found that children like Eden (who have both a genetic predisposition to allergies, and currently, multiple allergies and asthma) aren't likely to outgrow their allergies by elementary school, if that. But our agreement to the suggested "Milk Reintroduction" was an emotional knee-jerk. We wanted a Well Child despite the obvious signs (continued severe eczema and, then, lessened but occasional reflux) that our child was anything but.
So for a few days we fed Eden cautious amounts of dairy products until he had a landslide of allergic reactions. About a month later Eden had an anaphylactic attack and I rushed him to the ER. (We weren't told to carry an epi-pen.) Our story should have ended there. Shocked we turned an allergist to tell us what to do. But Eden's first allergist kept reminding my husband and I, "You're the experts!" while we felt like anything but.
Eden's symptoms continued. He rashed and hived on weekly basis. We felt confused about how "strict" we should be. This was 2003, before much more medical illumination of childhood food allergies. We needed a doctor take the reins; to teach us Eden's necessary dietary restrictions and medical protocol in crystal clear terms.
One more G.I. And then more allergist. So yeah, when Eden was about one and half years old we stopped bouncing between specialists and tiredly dribbled ourselves over to the Right Doctors. The next story is a happier one so I won't bother to tell it here. Instead, some suggestions for finding the Right Doctor for your allergic child.
If you don't believe that you and your child's needs are being taken care of by your current doctors, the first question you may ask yourself is "Why?"
A checklist of some possible answers:
1. My doctor and I don't communicate well
2. I'm not comfortable with my doctor's diagnosis or treatment
3. The office is difficult for me to navigate (i.e. too busy, wrong hours, poor location, carelessness with paperwork)
4. I'm using an HMO that isn't well designed for food-allergic children
To each of these question there are often more questions:
1. My doctor and I don't communicate well. Where do you think the lack of communication comes from? If you think that your doctor is qualified then you should ask yourself how prepared you are for appointments. Writing your own notes and questions is crucial. I was too anxious at Eden's appointments to speak as clearly and calmly as I can now. And trying to remember details only adds to anxiety. Anxiety leads to distraction and distraction makes it really hard to hear anything.
2. I'm not comfortable with my doctor's diagnosis or treatment. What kind of doctor does your food-allergic child need? Some pediatricians handle food allergies knowledgeably, especially if your child has a singular allergy, like peanut. If you feel that your diagnosis or treatment isn't correct or complete, you may want to consider a pediatric allergist in addition to a pediatrician. Or, you may be more concerned about your child's asthma than his food allergies and prefer to see a Pediatric Pulmonologist and plus a Pediatrician. Different combinations work for different children. Maybe you can get referrals from people you trust be it your pediatrician, your friends or from within your HMO that's always ideal. If you need more ways, visit these websites:
The American Academy of Allergy, Asthma and Immunology
3. The doctor's office is difficult for me to navigate. Pinpoint what aspects of the doctor's office makes you uncomfortable. Eden's first pediatrician had a bustling practice. His second pediatrician practiced with two other partners and she couldn't assure us which doctor we would see at appointments. Neither office policy was right for Eden. At that time, I felt he needed more continuity in his care.
4. I'm using an HMO that isn't well designed for food-allergic children. For advice specific to HMO's and food allergic children you can start by referencing these food allergy handbooks. If you are struggling with your HMO policies you aren't alone. There is a lot available literature.
If you are content with your doctor but still long for a savior, try to remember that neither you nor your doctor can make food allergies go away. But together you should be able to happily manage them.
Follow Susan Weissman on Twitter: www.twitter.com/susanweissman