Monday, April 13, 2015

Choosing an Allergist

Our Experiences with Allergist

Allergist (?):

I almost forgot about him, probably not the highest recommendation. We saw him when James, at 3, was diagnosed with chronic urticaria. After he diagnosed him and gave us his treatment protocol, James was followed by his pediatrician and we never saw that allergist again.

Allergist N.:

This is the allergist I think of as James's first allergist, the one that left us both scarred.

We have Kaiser, an HMO, and after James's first reaction, subsequent hospital visit and blood tests, he was referred to an allergist. After his first appointment, where the control did not react on his skin test (despite having no antihistamines for 4 days, no matter the significant look exchanged between the allergist and nurse), it was determined that James likely had a reaction to tree nuts, seeing as how he was eating hazelnuts when he reacted. A hazelnut blood test was never ordered. 

James was prescribed an EpiPen® (but we were not given directions on how or when to use it) and we were told to avoid tree nuts and wheat. Not long after, because of reflux problems, soy and peanuts were added to the list to avoid.

We were asked to return in a year for a food challenge.

And we did. Because I didn't know any better. No more testing was done before the challenge (although when his hazelnut iGe was eventually run it was only 0.46, so he does appear a good candidate for a challenge on paper).

He failed his challenge on the first dose and needed an injection of epinephrine and one of steroids. And Allergist N panicked. More than anything, this scared James. If the doctor was panicking, then the situation must be dire.

I now know, a lot was wrong with how this was handled: an oral food challenge (OFC) of a food with a known serious reaction, an OFC without test results for the food, panicking (well I knew that to start). So, I started researching more about food allergies and knew we would not return to this allergist.

Allergist S.:  

We saw after James's OAS reaction to melon. At the time, the urgent care had drawn blood, thought it most likely to be mango, and under the "you really can't make this stuff up file," couldn't figure out how to code testing for any of the other fruits he had eaten anyway.

I had done much more research by the point and realized that a positive blood test does not necessarily mean an allergy. I wanted to have an allergist review the situation and do the diagnosis. Only, according to Allergist S, everything except the tree nut allergy was in James's mind. Allergist N had failed to record any of the symptoms he had had during the failed food challenge, so they hadn't happened. I'm not sure why he thought Allergist N epi'ed James.

And yes, James was anxious going to see the allergist. The last time had not ended so well.

Allergist S said we should return in 5 years for re-evaluation. 

Allergist L:

Darren and I were trying to decide whether to change insurance as open enrollment was approaching. He has his own health issues and had been satisfied with the care he has been getting from Kaiser. I was completely dissatisfied with the allergy department. I did find an allergist within the Kaiser system that looked promising about an hour away. To see if we could all be happy with Kaiser, I wrote James's pediatrician outlining the problems I had had so far and that if we were unable to find a qualified allergist, we would be switching insurance.

And finally, we hit the jackpot. James is definitely complicated as an allergic patient goes: low iGes, high reactivity, OAS, possibly Celiac and not a wheat allergy, history of hives. There's a lot to tease out. But Allergist L did (and continues to do) the work to determine out what is relevant and important for diagnosis and treatment.

Personal Referral

This actually didn't work for me. Maybe if it was a true personal referral, from someone I knew and knew what they expected from a doctor. This was a referral from Facebook and landed us with Allergist S. Unlike Allergist N, I am sure he is competent. He was, however, a bad fit for our family.

Do You Feel Lucky?

So, how do you find a good allergist? Is it all luck?

With Allergist L, there was a lot of luck involved. After James failed his food challenge, I knew we would not being seeing Allergist N again. I started doing a lot of research about food allergies in general. One of the places that offers amazing resources is Kids with Food Allergies, including webinars and articles. One of the articles I read was written by Allergist L. I noted in the authors biography that he was a Kaiser allergist, but he seemed to be a little far from where we lived. Nevertheless, I bookmarked the article.

After the failed visit to Allergist S, I did returned to the article and thought again about Allergist L. Kaiser gives only the most basic of information on their website about each Dr. and some of that is useful. What I was most interested in was education and population served (I was interested in a Board Certified Pediatric Allergist).

From there, I did a Google search. I was looking to see if he had done any research and what the research was on. If I had done this with Allergist S, I would have found that he had one research paper on asthma. Allergist N had one paper on pneumonia. Allergist L has done research (and continues to do so) on food allergies. As James has no lung involvement, he needs an allergist that specializes in food allergies.

In general, I don't think it's necessary to eliminate doctors solely on their lack of research, because I'm sure many fine doctors focus on their treatment of patients alone. However, because of the system Kaiser has set up, making it difficult to get information on their doctors, and because, in general, a doctor conducting research is also going to be following the current research, I found this effective.

Finally, I was willing to drive. I live in an area surrounded by better places. If I were a highly qualified doctor, I would rather be by the beach than the desert  - and most of them have that choice. 

I went into our first appointment like an interview, as opposed to Allergist N, where I went in as a patient. And I think this is important. Realize that you can find an allergist for your family; it may take a little legwork, and a little luck.


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