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Toddler's Perioral Dermatitis

My daughter's journey with perioral dermatitis has gone on for over a year and she isn't even three years old yet. It began last winter with a rash around her mouth that pediatricians kept saying was eczema or bacterial or fungal, so they kept prescribing steroid creams and bacterial/fungal ointments. Nothing would help and we were constantly in and out of the doctors office.

Finally, around summertime, her pediatrician was at a loss and brought in the pediatric dermatologist who diagnosed her with perioral (and orbital) dermatitis. We have tried finacea, elidel and protopic. All worked for a little bit but eventually the rash would come back. It also seems prone to bacterial and fungal infections.

I have to use elidel or protopic continuously in order for her skin to stay somewhat healthy but it makes me nervous. The dermatologist says not to worry, but the labels says not to use for more than 6-12 weeks and there is a risk of lymphoma and skin cancer. It's a total scare label, but I'm not going to lie-- it makes me scared! This is my sweet two year old's health!

The rash has come back with a vengeance. She is now on a months dose of an erythromycin suspension 2x a day. It's hurting her belly and I've had to supplement with probiotics. Even worse, we are on day 4 and her face is the worst it has ever been!

Adults freak out thinking she is contagious and ask questions in front of her as if it is going to hurt their kids. Like she is diseased. She is nearly three and, though we don't talk about it in front of her and tell her she is beautiful and so pretty all the time, she is starting to notice it and says "my face! My face!" It's heartbreaking. And she struggles eating because food hurts her face when it touches her skin so I try to feed her myself to keep the contact down. But it goes against her independence.

I'm at a lost. I am desperate. We are out hundreds and hundreds of dollars with no remedy in sight. Summer is coming and I'm worried about her being in the sun because of the topical ointments and sunscreen seemed to make it worse last summer. If this antibiotic treatment doesn't work, I feel like we are out of options. Any suggestions for my little one?

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  • kjsx988

    Note: we've tried coconut oil and apple cider vinegar as was suggested in other forums and it made it worse. We completely avoid fluoride with her, though it is in our water, and try our best to avoid pyrophosphates and other triggering foods--- but this is a picky toddler with a low weight we are dealing with so she must eat what she will eat. sad

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  • heather39579 kjsx988

    Oh I feel your pain. My 6 year old recently developed perioral dermatitis. By recent I mean we've been dealing with it for almost 6 months now. Also tried ellidell, an antibiotic cream, steroids, everything. I have stopped putting it all on her face because I got so tired of lathering her up in chemicals that were not working. We have another appointment next week in which I fully expect to start the oral antibiotics. Not looking forward to it.

    I did notice during spring break it got a little better. Could have been a coincidence but being outside in the sun and in chlorine pools seemed to calm it down. I was shocked because I fully expected it to get worse.

    I don't know know. I also feel totally defeated by this. It is so very unsightly and the looks from other parents......I'm just over it.

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