Allergy Frustration

Today Baby E and M&M saw the allergist, Dr. O.

Both had skin testing done--M&M for the top 8 plus corn and dust mites, and Baby E for a few new foods we've been suspecting, plus corn and soy (which we've been avoiding now for almost 18 months and 7 months, respectively). Neither set of tests showed any positive results.

As for M&M, he felt it likely she has reflux, especially considering that she had it as a baby.

He described the typical kid with reflux: "A kid with reflux might be small for her age, often doesn't gain much weight or grow very fast, doesn't want to eat, or is hungry often but then eats two bites and says she's full, might complain of tummyaches, could have throat and mouth pain, may snore or cough at night, and sometimes they can even have bad teeth from the stomach acid coming back up."

Sure enough, that sounds a lot like M&M.

Dr. O says that reflux is often hereditary and tends to be lifelong. He's going to write a note to our pediatrician to suggest that he look into the possibility

Dr. O is nice and seems down-to-earth. He wears things like faded jeans and a plaid shirt to work, which cracks me up. He believes me about E's reactions and doesn't act like he knows everything, He doesn't pretend that statistics are the end-all-be-all of diagnosis. He says that there is much we don't know about allergies and the immune system, and that symptoms trump testing.

But he also says he can't really do anything for us. Since the RAST test and his skin-prick tests were negative (even though previous skin tests were positive), we're just on our own trying to diagnose problems through trial and error.

He has an unusual method of doing skin-prick tests.

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Dr. O said he had never seen a reaction of 0 to even the negative control on a skin test, and that the normal response to the negative saline control should be a wheal of about 5mm, with a wheal of at least 3mm larger (8 or bigger) for a positive result.

I expressed surprise, saying that the other allergists we'd seen and everything I'd read said the reaction was supposed to be 0 for the negative control.

He said something like, "Supposedly. Everything you'll read says the negative control should be 0, but that's not really how it works. That's what other allergists will say, but I've been doing this for 20 years and that's not the way I learned it."

I figured out why when the nurse did the testing. She took each allergen extract on a multi-toothed plastic applicator and then pushed it in and twisted the points, rotating the applicator while pushing it down on the kids' backs to actually scratch their skin, instead of just pricking it.

"You have to get enough of the allergen in there to cause a reaction," Dr. O said. "Otherwise it won't be as accurate--you don't get a big enough wheal."

Of course you're going to get a larger wheal when scratching the skin and causing abrasions than when just pricking it to introduce the allergen. From everything I've read, the skin scratch method is considered less accurate and harder to interpret (and more prone to false positives) than the basic prick method the other two allergists used.

Dr. O thought Baby E's previous skin tests were invalid or negative because she had no wheal and no flare to the negative saline control (she did have wheal and flare to the positive histamine flare and to several allergens), and none of her positives were greater than 7mm even to the histamine control.

He said it was statistically 95% certain that Baby E did not have true IgE regulated allergies, but that she obviously did have problems with certain foods, although he didn't know exactly what or why. He said we should continue avoiding any foods that cause adverse reactions, of course.

He did say that he would recommend that we continue to avoid peanuts, tree nuts, fish and shellfish for E until she is at least 3, but that we probably don't need to worry about milk, eggs and wheat.

I told him that I was concerned about the fact that Baby E's reactions seemed to be escalating, and becoming more severe to smaller traces of allergens--particularly corn. It started out with just GI issues. Now we're seeing more itching, rashes and facial swelling in addition to the GI symptoms.

He said that generally allergic reactions don't get worse over time; they stay pretty much the same. Although they can occasionally escalate, that's rare. He said that since E doesn't have asthma we probably don't need to worry about the reactions being dangerous. It's the kids with asthma, he said, that end up having life-threatening anaphylaxis.

I asked what the likelihood was of E's facial swelling progressing into airway swelling and potentially becoming dangerous. He said, "None. Or as close to zero as it can get without being 100%, because nothing is 100%. You have the epi-pens around, so that's good. But unless she starts getting asthma you really don't need to worry about it."

He didn't really tell me anything I hadn't heard before, and didn't seem to think there was anything else he could do for us. I guess the common opinion among allergy communities that allergists aren't helpful for much besides doing testing and prescribing medications is pretty accurate. We're on our own trying to figure out how to test and live with Baby E's adverse food reactions.

Since the method of skin-prick testing used by the two allergists closer to home seems more accurate for us (at least Baby E tested positive to the foods we know she reacts to), we'll probably just go back to one of them if we feel a need for more testing in the future. It's not really worth driving all that distance just for testing that I don't trust as much. I do trust either of the other allergists closer to home to do testing.

Dr. O did give me a "to whom it may concern" letter to carry stating that Baby E has adverse food reactions and should be allowed to carry in her own food, in case we ever run into a problem with a restaurant not letting us bring in outside food. I wish he would have made it less specific to restaurants, but hopefully other establishments like sports arenas will honor it also.

He said that with true IgE allergies, typically it's very rare for a person to have allergies to more than one food family, and that typically allergies don't escalate with subsequent exposures the way Baby E's reactions have so far, so that's a point against allergies as a cause. That seemed strange to me, because the food allergy online communities are full of people with multiple allergies that seem to change in severity.

He also said that kids with eczema do often just get rashes that come and go, usually with no explanation. He seemed to feel that some of Baby E's rashes were likely just random or caused by something topical, and not necessarily from food.

He did agree that the fact we could get a consistent, reproducible, quick-onset reaction by feeding E specific foods was pretty clear that she was having food reactions, though, and that this would normally point toward allergy. He also said that the fact it goes away with Benadryl is another indication pointing toward allergy.

Other than that, he pretty much said that he didn't have a clue what was going on with Baby E, except that it was obvious she was having SOME kind of adverse food reactions, whether a true IgE allergy or not, and that we'd just have to figure it out ourselves with trial and error.

I'm not sure exactly what I was hoping for, but that wasn't it.

I doubt we'll be going back to any allergist again unless we have specific things we want to have tested and it's not something the regular pediatrician can order.

You know, I really don't care that much whether Baby E's reactions are officially Ige-regulated allergies or not. But I sure would like to see her get better. I'd really love to have a cure for whatever it is, but failing that I'd ideally like to have a doctor of some sort or another who could actually help us figure out how to best manage it.

At least avoiding the foods seems to be doing the trick. If only avoiding them (especially corn) wasn't quite so hard.