EC in Children

All,

I'm the concerned father of a wonderful 4-year-old boy. Just over a month ago, my son had a piece of dry skin hanging off his lip. He peeled it, not knowing that it would hurt, and exposed the raw skin under it.

Since then, his lips have given every indication of EC. It's horrible. The gray brown build up, the cycling, the constant pain. The little guy I know has grown irritable and fussy, and refuses to eat things like ice cream and pizza, because they hurt his lips. It's tragic to have something like that, but being a father and helpless is absolutely unbearable.

In full disclosure, he has not been diagnosed with EC, but from what I read, that seems common. I am well versed in the area now.

So instead of sitting back as he visits one clueless dermatologist after another, I was hoping to enlist some help on here. I have a million questions. I'm hoping to try to make sense of several disparate details.

- Selfishly, my first question for the board regulars, how often do you see false alarms? Should I be convinced that he has EC after only a month? He's been on Antibiotics , bactroban, triple Antibiotic ointment, and hydrocortisone. We've tried peeling. We've tried not peeling. From most of your experiences, can I assume it safe to self-diagnose this? Are there cases of people coming to the boards this early and coming back to report the all clear?

- Are there any other parents of young children here? Any suggestions? At this age, is it at all likely to be an easily treatable food allergy ? I read that EC can go away with a hormonal shift. Do young children see this clear up more often than teens and adults?

- I'm trying to grasp the scope of this issue. To me, it seems obvious that it is a symptom, and not an actual disease. This is because there are multiple sub-segments of
EC sufferers, and treatment varies so greatly. So demographics would be great to know.

- How old were you when you got EC?
- How old are you now?
- How long is the longest period it disappeared for, if at all?
- Have you found any way to minimize the impact that EC has, even if not preventing it from forming?
- Would you objectively consider yourself to be someone dealing with anxiety (my son shows signs of anxiety, but is socially well put together, he enjoys people)?
- If you deal with anxiety, did you deal with it prior to your EC?
- What common treatments on the board have you tried? (vitamins, calendula, compresses, balms, diet changes, stress coping methods, increased water intake) Did they do anything?
- Do you have a known immunodeficiency?
- What percentage of people seem to "grow out of" EC?
- Have you had panels done to test for deficiencies or infections?
- Are there any studies that are available that are done over a large set of patients with EC? All I've seen are individual studies.
- Are there any specialists that see EC on a regular basis? It seems most derms are baffled by this.

Any insight will make me feel better. Even if this doesn't go away, it makes me feel better to be pro-active. I feel so bad for everyone with this affliction. If I could take it from my son and give it to myself, there would be absolutely no hesitation. I've never been so frustrated...