XP - eczema help, please? :(

Pelusa214

My poor kid has been suffering from genital/anal eczema for 10 months now, and nothing is helping. A few months after it started, she started getting it on the corner of her mouth, too. That's the only two places she has it. We brought her to the pedi 3 times, they finally sent us to a dermatologist, and finally we took her to an allergist on our own. All 3 say "It's a strange, uncommon place for eczema, but that's exactly what it looks like", then they just keep throwing different creams at us - aquaphor, hydrocortizone, steroid creams, etc. The only thing that seems to help a little is the steroid cream, but I hate to keep using it, especially since the two places are her anus/vagina and her mouth.

Now, she has gotten to the point of scratching herself bloody. She's got a fissure on her perenium and one at the top of her butt crack, and now one on the corner of her mouth, too. The eczema on her mouth looks a lot worse than the eczema down below, but she must be scratching more down there because she's splitting her skin open. I found bloody underwear twice in the past week. She waits until she's in bed or alone, because she doesn't want us to see her scratch

I don't know what to do. She doesn't want me to even touch down there because it hurts, so it's hard to even put creams on it. I have her soak in aveeno oatmeal bath, and she only uses Cetaphil Restoraderm cleansing lotion on her skin.

Her 4 year checkup is Monday, and I can't stand this anymore - SOMEONE needs to help my little girl. I just don't know what to ask for. Should I see another allergist? The one we saw only tested for 5 things (all negative, scratch test only, no bloodwork). We've since started suspecting several foods as irritants, none of which he tested for, but we're not sure because she's still getting rashes. I even wondered if it was pinworms, but she has it on her mouth, too. Should I see another dermatologist?

I feel like there's got to be things triggering it, and because it's only showing up where the food goes in & comes out, I really feel we should look at her diet. I don't even know what to feed her anymore We've been keeping her from eating tomatoes, potatoes, bananas, peppers, eggplant and a host of other things, but I don't know if it's for nothing. And it's not like she's 1 or 2, she's 4, so she's really feeling deprived when we keep telling her she can't have things.

Can anyone offer advice or help of any sort? She behaves horribly when she has flare-ups, too, and I don't know if it's the steroid cream, if it's the agitation triggering the eczema, or if it's the eczema irritating her & making her act out. I just want her to feel better, and don't want the poor thing to have to show all her private parts to doctor after doctor all the time, OR to have to have me spreading cream on them all the time

di0607

My boys were using steroid creams 2 times a day and it was only slightly helping. My mom bought us a starter set from sebamed baby (body wash, shampoo, bubble bath and lotion). It's all gone! I swear I don't work for the company but the stuff truly helps. I hope you find something that works for your LO.

ababymaybe

Keep a food and symptom diary. I would probably avoid the top 8 allergens for now and see if that helps. And blood allergy testing wouldn't hurt, though allergy testing in general isn't all that accurate with babies. Unfortunately most eczema is not related to food or allergies at all. I know how frustrating it is. I hope it improves for your LO soon.