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Finding the 'Right' Doctor for Your Allergic Child

Posted: 12/29/10 10:50 AM ET

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

American College of Asthma, Allergy 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.

 
 
 

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HUFFPOST SUPER USER
Margie Kronewitter
01:41 AM on 12/31/2010
I thank Dr. Doris Rapp, M.D. with saving our lives & sanity. Her book "Is This Your Child?" focuses on Unrecognized Allergies. It teaches parents to become detectives & discover the CAUSE, which is the only solution. Suppression of symptoms with drugs will channel the reaction to another system, requiring additional drugs. My son & I became ill from leaking plumbing causing mold concealed between the walls. Molds are complex and cause 80% of sinusitis. Drainage results in ingestion of mold toxins which damages the LIVER resulting in further impairment of detoxification, possibly cancer.

Most allergies are a reaction to molds, petrochemicals, pesticides or chemicals: synthetic, or those naturally found in foods. These are components of ubiquitous "DUST". Reactions occur when the body is DEPLETED of the NUTRIENTS for DETOXIFICATION. Lack of Essential Fatty Acids is another culprit, as they form the skins of EVERY cell which has to allow in nutrients and eliminate toxins. EFAs also form the protective mucous lining.

I suggest this book to EVERYONE, because "outgrowing allergies" is often just the body channelling toxins out through a different system. Ex; Intestinal symptoms becomming rashes, headache or joint pain from the same CAUSE. Dr. Rapp also has newer books. She avoids medications which suppress symptoms, teaches "4 day elimination diet" and reintroduction of foods and HEALS primarily with inexpensive NUTRIENTS.

I'm sure GMO "frankenfoods" & rBGHormone milk coupound the detection and consider them a food crime. Parents must learn that reactions can also take days to surface.
01:16 PM on 12/30/2010
spot on article here, esp with my 4 yr old son who gets eczema on his cheeks, neck, back, in and outside of his ears... his primary care pedi told me flat out "any and all allergen tests designed to accurately pinpoint the exact foods a child is reacting to, are fairly useless when these tests are administered to a child under the ages of 8-10... is there any validity to this statement?

i've been to two allergists, all i've been able to identify is "possibly dairy" "high probability to tree nuts" etc... nothing concrete... i'm struggling trying to find out what foods trigger him...
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HUFFPOST BLOGGER
Susan Weissman
05:03 PM on 12/30/2010
I am not dispensing medical advice - just views based on my experience - but that statement about tests sounds very extreme. It's generally understood that allergy tests must be considered in tandem with other factors - anecdotal experiences, health history, age of child, etc. Again, based on my experience the "allergic list" of your child's triggers will likely be based on carefully considered allergy tests, your doctor's input and your feedback as day to day witnesses.
07:05 PM on 12/30/2010
i understand, thanks for trying... it would be nice for an allergist to ring in here regarding the scientific components to allergen tests and how the data is read... it would be frustrating to learn that the field is that vague and we shoulld consider more the external factors of assessing a child's reactions versus the results from tests given by allergists...
11:12 AM on 12/30/2010
Step zero, which you omitted, is: find a doctor who thinks that children should be HEALTHY, not just surviving. Rashes, eczema, chronic runny nose, infrequent bowel movements, *too* frequent bowel movements, reflux, intestinal discomfort... none of these are "normal" for anyone. They ALL have a cause. Too many doctors think that if you're not dying, their work is done.

My son was nine months old before I figured out, all by myself (with some help from my friends), that he was allergic to wheat. The doctor reassured me that the constant poop dribbles were "normal" for a breastfed infant, and gave me some Triple Paste for the "diaper rash". But a week after I stopped eating wheat (he refused all solids still at nine months), his "diaper rash" (which, on a later trial, came back all over his torso and was obviously eczema) started clearing up, he was having regular BMs once a day, his cradle cap and the crusty skin behind his ears went away... and within a month, he was walking, eating solids, and mostly happy rather than mostly cranky.
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HUFFPOST BLOGGER
Susan Weissman
05:04 PM on 12/30/2010
You are absolutely right! Your "Step Zero" is crucial and surprisingly, it does seem to get skipped sometimes doesn't it?
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HUFFPOST SUPER USER
Margie Kronewitter
02:11 AM on 12/31/2010
The list on the side of quality vitamins, "Contains No dairy yeast, wheat, gluten, corn, soy preservatives, artificial colors or flavors" are the primary causes of INGESTED allergens. Often these foods can be eaten in the ORGANIC, non GMO (corn & soy) form. Organic milk is also different than rBGHormone and conventionally farmed dairy.

INHALANT allergies are DUST which is composed of mold, chemicals, pesticides, etc.

If you are waking at the SAME TIME every night, it is often the time a particular MOLD sporulates.

Quality air cleaners are expensive, as are filters. To save money, I take mine outside and vaccum the charcoal filter, rather than replacint it.

Even non scented laundry detergents make me react. (I have Multiple Chemical Sensitivity) EcoVer delicate wash from the health food store is my favorite. Borax is also a washing assist and neutralizer.

The book "Brain Allergies" (when the brain swells in addition to the nose and eyes being affected) says reactions are often the result of vitamin B6 utilization disorder. Dr. Philpott (as I recall) suggests P 5 P which is the active form of B6. B6 basically controls all amino acids which are components of ALL enzyme activity in the body.

Following Dr. Doris Rapp, M.D. book "Is This Your Child?" (my son became unrecognizable, both physically and emotionally) will contribute to the health of all family members. I'm sure her newer books are excellent, as she is a dedicated, out of the box pediatrician with 50 years experience.
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HUFFPOST COMMUNITY MODERATOR
rini
Physician & mother..struggling musician
08:23 PM on 12/29/2010
Thanks for this article. As an allergist, I agree with everything that you are saying. Food allergy can be tough. (One more thing, though. Allergists can treat asthma as well as pulmonary physicians can.)
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HUFFPOST BLOGGER
Susan Weissman
05:06 PM on 12/30/2010
Your welcome. I appreciate your last comment - in fact, my son's asthma IS treated by his allergist so I realize that is an important option to consider.
12:18 PM on 12/29/2010
I would like all allergy interested people to know that MOST allergies of all kinds: inhaled, ingested, contacted - can be cleared quite easily, non-invasively, druglessly, and in many cases, can be cleared by the sufferer or their family at home, with quick and easy training. It's important for people to know that we don't need elaborate testing and medications, etc. There is help available to any and all through the alternative medical community; esp. those of us who work with energy healing. IT WORKS!
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HUFFPOST COMMUNITY MODERATOR
rini
Physician & mother..struggling musician
08:21 PM on 12/29/2010
Really. If this is true, there's a lot of money in it and we would probably know about it. As an allergist, who has been in practice for over twelve years, I have yet to here about this miraculous treatment.
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alongst
too often denied to speak
03:33 PM on 12/30/2010
It's top secret- and you spend only $499 per month !