Dermatology and Dermatographism

[Note: It took me a week to write this post during moments snatched at the computer. Please excuse the length and possible disjointedness. :) ]

Last Thursday, on Baby E's 21-month birthday, we went to the dermatologist. Sis J came along as an extra pair of hands and ears, which was immensely helpful.

I took along all my pictures of E's rashes, but she didn't have a rash at the time. I think it's been at least a couple of weeks since she had one.

Unfortunately, even with my best efforts, none of the rashes have really showed up that well in photos. So I tried to describe how they were redder, brighter, more noticeable, etc. in real life than in the photos.

I also described the circumstances in which the rashes (if that's what they are) usually appear, and gave a history of Baby E's health and her other medical conditions that have been verified.

I explained that the rashes and other symptoms seem to be connected to certain foods, but that (while the pediatrician, GI specialist and nutritionist all seem to think the foods are causing the reactions) the allergists we've seen don't seem to feel they are the result of food allergies. So that we don't really know what to think.

The GI specialist thought we should consult a dermatologist and referred us to this one, so there we were.

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We started out talking to the medical assistant, a young doctor with such a connected and caring demeanor that I initially thought she was a nurse. She took a detailed history, listened carefully, and asked good questions. I explained that we were there to hopefully get some insight into what Baby E's rashes were--whether they were eczema, hives, some kind of histamine sensitivity, or something else altogether.

The young doctor looked at the photos, listened to my description of the rashes and the circumstances surrounding them (that they usually happen after consuming certain foods, and usually happen in conjunction with other symptoms like itching, throat discomfort, slight facial swelling, diarrhea, stomach pain, etc.)

"They definitely look like hives to me, with what you describe," she said. "It sounds like she's getting hives internally, too, and that can cause the cramping and diarrhea."

Then she went out and gave the summary to the dermatologist.

He came in and looked at Baby E, ran a capped pen down her back and said that she "definitely has dermographism" (a.k.a. dermatographism), said that she certainly does not have eczema (which is what the allergist had diagnosed her with) or look like a child who has had eczema (no dry skin).

He glanced briefly at the photos I had brought, asked questions which I had a hard time answering without rambling (and my answers seemed mostly futile anyway, since he seemed to interrupt after about half a sentence, often to tell me why my answer was irrelevant or didn't make sense). The more flustered and frustrated I got, the more poorly I communicated, I'm sure. I have enough trouble staying on track, concise and to-the-point in a conversation anyway, and stress makes it much worse.

He said that Baby 's skin looked perfect and healthy, questioned why we were even there as it seemed rather pointless to him, and said that he didn't think her rashes were severe and that they were probably just random, not connected to food or anything we're doing at all.

I also, into the bargain, got an interesting lecture about why it's impossible for anything in the mother's diet to affect a breastfed baby and how "that has all been completely debunked, and there's no evidence whatsoever to support it."

When I offered to bring Baby E in for a double-blind placebo-controlled food challenge, he said that wasn't his area of expertise, of course. And when I tried to explain that the rashes almost always happen in conjunction with GI symptoms, he said that GI allergies weren't his area of expertise, either. Fair enough, I guess.

His matter of greatest concern was educating me about the terrible things that happen to children whose mothers needlessly restrict their diets. He told me about all the children he sees who are horribly ill because their mothers needlessly restricted their diets, and all the frightening diseases and conditions they have.

He went on about this very emphatically, for what seemed like a long time. Even though he never actually asked (or let me explain) what Baby E is or isn't eating. Never mind that Baby E is perfectly healthy and happy as long as we stay away from the foods that turn her into a screaming, itching, sleepless, antisocial, miserable, pain-filled, lethargic, diarrhea-tormented creature completely different from her normal self.

Never mind that she's gaining weight well and growing normally (much better with the restricted diet, actually), and that the GI specialist, nutritionist and pediatrician all agree that she's doing just fine on our from-scratch carefully-balanced diet of whole grains, organic fruits and vegetables, and farm-direct additive-free meat.

Because, you know, all those bleached, enriched, prepackaged, corn-syrup-laden foods we're not eating because they contain corn and soy would make her so much healthier. Of course eating a diet based on corn, wheat with all the vitamins and fiber removed, white rice and deep-fried potatoes day in and day out (like most Americans) is so much more well-rounded than eating a variety of whole grains and other starches like spaghetti squash, quinoa, buckwheat, spelt, rye, barley, amaranth, yucca root, fresh raw water chestnuts, brown rice, a variety of unusual fruits and vegetables, and the dozens of other nutrient-rich options that don't fit into the standard American diet.

I wanted to ask how she could absorb much nutritional value from a food that gives her diarrhea and other GI symptoms, anyway. But I didn't. By that point I just wanted to get out of there.

We had accomplished what I'd gone for, anyway: we'd determined that the dermatologist didn't think the rashes were of concern, thought E had dermographism, and didn't think there was anything else significant going on. So I thanked him and we left.

I had asked a couple of questions, including whether dermographism would result in rashes evenly distributed over both cheeks when nothing had touched them, repeatedly 15 minutes after eating a particular food, in combination with GI symptoms and generalized itching. He didn't really answer that except to say that GI allergies weren't his area of expertise.

I also asked whether dermographism was consistent with negative results on all but 8 of the several dozen items we tested for with skin-prick testing. He said no, it wasn't really. If the positives were the result of dermographism then all the tests should have been positive, including the negative control.

At least I didn't break down until we got out of the office. I was so rattled by his insistence that I was imagining correlations where none exist, and potentially harming my daughter by needlessly limiting her diet. When I get that type of response from a doctor who didn't even bother to ask questions (or listen to the answers to the questions he did ask) before making such assumptions, it makes me feel crazy. I feel frustrated with myself for not communicating better and making the doctor understand. I feel frustrated with the doctor for not listening or communicating better. I feel stupid and ridiculous.

I question myself and my perceptions about life enough in general anyway, and I have a lot of respect for doctors and their knowledge. When a doctor responds this way, I come out of the appointment feeling like a terrible mother who did a horrible job communicating in the appointment. I hate feeling like doctors think I'm some kind of crazy munchausen mother who is just overreacting to the normal variations of a normal child and choosing an extremely difficult lifestyle because I somehow want to live this way.

I come out of an appointment like that wondering if maybe I should just go home and feed Baby E corn chips to see whether I'm really imagining it and drawing connections where they don't exist. Or if maybe the absence of reactions isn't worth the price we pay. Or if maybe I'm just a terrible mother not to have this all figured out and be handling it better.

I suppose it IS possible that it is just coincidence that Baby E can go weeks without a reaction, rash or diarrhea and then it just happens that when she eats a food that turns out to have a corn derivative she gets all those miserable symptoms all at once, just randomly happening to coincide with the consumption of the food. I do believe it's likely that some of the symptoms don't have identifiable causes. Some may even be random.

I'm sure there are times when I've blamed a reflux flare-up, a virus or some random occurrence on food, when food wasn't the cause. Corn is so prevalent that I could probably find some way Baby E may have been exposed to it at any given moment. I'm very aware of that, and try to be careful about it and not make assumptions. So much so that I've later ended up feeling stupid not to realize sooner that Baby E was having a reaction rather than just some odd random set of symptoms.

That's one of the reasons why, if it's not a super-bad reaction, I try to test things at least two or three times and carefully document the symptoms and circumstances each time, to see a consistent repeatable pattern before I conclude that the food is causing the symptoms. But I guess it's possible that she could get the same symptoms within the same time frame three times in a row after eating the same food, and it could actually be a coincidence. It seems unlikely to me, but I suppose it could happen.

Later that evening, I called the dermatologist's office. I wanted to apologize for interrupting him and being disjointed during the appointment, and also I wanted to make sure he knew that we were working with a nutritionist, GI specialist and pediatrician to get the healthiest most well-rounded diet possible for Baby E, and that they all felt she was healthy and thriving. I also wanted him to know that we were attempting to introduce new or suspect foods frequently (pretty much on a weekly basis).

He was gracious and friendly on the phone, and it made me feel a bit better to follow up that way.

I also had some questions I hadn't gotten to ask during the appointment. But when he started off about the danger of dietary restrictions again (and how he was glad we weren't doing _______, but it was really bad when _______) I got flustered again, said something agreeable and non-committal, and ended the conversation.

The next day I called the appointment line to ask if it was possible for me to e-mail my questions, since I communicate so much better in writing. They said no, but a nurse wrote down the questions. I still forgot at least one thing I'd meant to ask, but I was able to communicate more clearly and concisely.

A little while later the medical assistant (the doctor who had taken the history before the dermatologist came in) called. She was able to answer most of my questions.

Can dermographism cause generalized itching, and itching of the ears/nose/throat, as well as itching localized at the rash? Yes.

Is it histamine-regulated? Are antihistamines effective to combat it? Yes, certainly.

Can it vary considerably, or come and go? For instance, when Baby E played with the Crayola colored pencils my first thought was that the welts were caused by dermographism. When I took a very similar blunt object and brushed it against her skin several times right next to the wheals she had, it did raise slight red marks. But the marks were much smaller and lighter and faded within 15 minutes or so, whereas the wheals from the colored pencils were much more dramatic and lasted for hours.

Also, Baby E frequently rubs things like crackers and crispy cereal vigorously on her cheeks with no reaction whatsoever, while at other times (seemingly connected to eating specific foods) she will get a rash on both cheeks that appears quickly and dramatically when nothing has even touched her face. Dermographism can vary, and the wheals may be different sizes at different times or may be worse on some parts of the body than on others. (Obviously, that didn't really answer my question.)

Would dermographism cause an even, solid, scaly rash on both cheeks rather than wheals specifically where something touched or rubbed her skin? Well, I'm not sure, Dermographism can vary.

Can demographism cause GI symptoms like diarrhea and stomach pain? Not usually. It is possible that she actually is getting hives. We can't diagnose that without seeing her when she has the rash, especially since your photos were kind of blurry.

We have had other doctors suggest that Baby E might have some kind of histamine sensitivity, in which she reacts more strongly to much smaller amounts of histamine than most people would. Is that a possibility? That's what dermographism is.

What I didn't ask, and would have liked to (but wouldn't have been quite sure how to word it in brief) was this:

We know that Baby E has issues with reflux, aspiration, and some kind of metabolic or enzyme issue with breaking down certain sugars in foods. We know that certain foods consistently cause GI symptoms.

The dermatologist mentioned that things like fevers and viruses--anything that stimulates the immune system--are the most common causes of hives. Could the other, non-allergy conditions that cause Baby E's discomfort be stimulating her immune system or releasing histamine in such a way that she is getting rashes and itching simply as a reaction to those conditions or from realted symptoms like diarrhea?

That seems as though it might actually make some sense as to why she gets allergy-like symptoms after consuming certain foods even if they actually turn out to not be true allergies. And, that would explain many of the reactions we've been unable to pinpoint.

An extreme sensitivity to histamines may also explain why Baby E seems to get mild to moderate reactions immediately after nursing whenever I'm having a clear allergic reaction to something like dust mites. Could histamines (or eosiniphils) in my milk be somehow affecting Baby E? This PubMed case study summary about an infant who experienced an anaphylactoid reaction after nursing from a mother who was having an anaphylactic allergic reaction seems to support such a theory.

I really don't understand all this, and I wish I had someone to explain it to me.

I certainly don't doubt that Baby E has dermographism. I've commented a number of times before about how she sometimes gets red marks from something as simple as the pattern on the bottom of the bathtub, or being gently picked up. Clothing often irritates her, and she'll get red marks or a slight rash where a tag or seam rubs her skin.

But the redness and any wheals she gets from that sort of thing are patently obvious as a contact reaction. For example, yesterday Baby E fell asleep on a crocheted blanket. When she woke up, she had something that looked exactly like fairly large hives. They lasted for an hour or so. But they didn't seem to bother her much if at all, and they were on only one cheek--in the exact pattern of the blanket, and only in the places where the blanket had been pressing on her skin for the past hour.

But if all her reactions are caused by dermographism, why are we seemingly able to prevent them for weeks at a time simply by avoiding specific foods? Why do they appear suddenly, evenly distributed on both cheeks, when nothing has touched her cheeks in the last 30 minutes or more? Why would they repeat themselves again after eating the same food--a food that, when researched, turns out to contain corn or to have caused similar reactions in other people on the Avoiding Corn Forum?

Why would she have had no wheal or flare whatsoever to the negative control and most of the allergens tested, while having positive results on the skin-prick test only to foods which seem to give her problems in subsequent trials? Why do the red marks from pressure or abrasion look and behave so differently from the ones that appear in correlation with specific foods? Why? Why? Why?

Someday it would be nice not to have more questions than answers.