Desperate mother-please help!

[kindredspirits]

My teen daughter has a fragrance allergy which results in severe dermatitis on her face. It goes red, raw and blisters and takes weeks to heal. It is beginning to leave scars which don't have time to heal before her next exposure. It is triggered by deodorant sprays which kids use at school, air freshener sprays and perfume in enclosed spaces. She can no longer walk through Duty Free or a department store beauty section.

We have been prescribed Elidel for night use, and an emollient cream for day use but it doesn't help. We have spoken with so many doctors and specialists but they all just shrug their shoulders and say she's going to have to learn to avoid the triggers. She is beginning to have nose bleeds after exposure too, which I assume is damage to the inside of her nose...

We have one last appointment with a new dermatologist next week...if anyone has ideas for a medication we can ask for, I would be so grateful.

Hi @kindredspirits … I’m both a mother of twins (17) who have multiple allergies and skin issues and a nurse.
Elidel is a brilliant medication. Unlike steroid creams, it is an immunosuppressant drug. Instead of treating the reaction, it stops it from happening. All well and good, but we need to treat the reaction first (most likely with steroid cream) and start applying the immunosupressant only once the skin has calmed the farm. I would continue the regular sensitive skin hygiene protocol, moisturize like your life depended on it, and ensure the sunscreen is happening.

No idea. Would wearing a mask in communal areas help?
Has she had any patch tests?
Could it be a symptom with a different cause, e.g. suppressed immune system?
You didn't ask but she looks lovely.
Hope you get some answers from the dermatologist.

Thanks @NeunundneunzigHorseBallonz we've been using the Elidel for about 6 months, should we being seeing any improvement yet?

@KirstenBlest thank you-I do try to make her feel good about herself despite the rash! We have a family history of immune issues and the doctors think there's enough of a predisposition to explain why the rash resembles the malar rash, although at a loss as to why only fragrances trigger it. Yep the patch testing confirmed that fragrances were the trigger, especially in aerosol form.

@kindredspirits You need to get rid of the reaction first - steroid cream should do that, THEN apply elidel to stop it coming back. It doesn’t treat the inflammation, it stops it happening later.

I have the exact same thing although not such a severe reaction. I suddenly developed it in my 30s and I could not get a resolution for a while as they did not seem to know what it was. I paid privately to see a consultant dermatologist and they prescribed a steroid cream and an immune suppressant cream which sounds similar to what you have now. I used the steroids for a few days and then the other cream and can use the other as soon as a flare up begins. I try to avoid places where there may be lots of fragrances, sometimes going in to work sets it off but not too bad. However a large group of teenagers would definitely set it off so I feel for her.

My DC's school doesn't allow any aerosol deodorants because it triggers asthma in some pupils. Could you talk to the school about ways of making it a safer place for her?

How awful for her, and you.

There's an excellent consultant allergist who has a private clinic in London:

https://www.imperial.nhs.uk/consultant-directory/sophie-farooque

I thought of her as I'm sure she won't shrug her shoulders. She is passionate about allergy and has just written a book for patients. (To be clear, I haven't seen her myself.)

https://www.finder.bupa.co.uk/Consultant/view/299491/drsophiee_farooque

Hi, Sorry for the delayed reply, I have only just seen your post. I hope your daughter is getting help. I have a similar problem and wanted to say she is not alone, this is becoming a serious problem for many people. Toxic fragrance products seem to be everywhere at the moment. Many cleaning companies use horrendous fragrance products to "sanitize" public spaces like cafes, hospitals and schools etc. Have you asked the school about the products used by their contractor? in my experience there is a tendency to blame the victim which is totally unacceptable, no one would do that over passive smoking. Everyone says "how do we medicate the victim" when they should ask, how do we remove a toxic substance from the school environment. It is becoming difficult to avoid exposure from other people especially those who use scent boost products. Make sure the school take you seriously. How is your daughter when not in school? if she is better then the school has an issue it should try to remedy. Make your presence felt because the more of us that speak out the better. This is an issue that should be taken more seriously.