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Wish Us Luck Today!

Electra

By Electra
in Dermatitis Herpetiformis

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Electra Enthusiast
Electra
Posted

My daughter is seeing the dermatologist today and I did succeed in making her break out in one tiny little spot. She also has a small one on her face that she's had for a week or so. I mobbed her hair down with conditioners with wheat in them this morning hoping to get an even better reaction. I also rinsed it all out in the tub and let her play in the water for a while. I did rub a bunch on her skin too lol!! I'm not sure if it will do anything but it's worth a try. I'm hoping they can get a good sample for the test, so we can get a definitive diagnosis!!

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dlp252 Apprentice
dlp252
Posted

Good luck today Angie!

jerseyangel Proficient
jerseyangel
Posted

Best of luck today, Angie :) Hope this leads to getting some answers!

marciab Enthusiast
marciab
Posted

Good luck today. It dawned on me last nite that you could have slipped some plain flour (or some with sugar in it) onto her crackers or popcorn and she would not have noticed it either.

Two year olds are sooo easy to fool. You can forget it when she is 19 ;) marcia

Electra Enthusiast
Electra
Posted
  • Author

Thanks so much for your well wishes. We actually didn't end up doing the skin biopsy. The specialist seemed very good and seemed like she believed me (of course she had my daughter pediatrician records with the rash well documented on them). She actually gave me the option and said if I wanted her to have the biopsy I could, but she said she thought we would have a better chance at getting a positive if she were having a breakout. She also said that my daugher is at the absolute WORST age to do it. She said it could mentally scar her for life and make her hate doctors forever. She suggested we go to the GI in a couple weeks and have him do the intestinal biopsy and if that comes out negative then we can try to find a doctor that will do the biopsy with general anesthesia.

My plan is to try and get her to break out before her appointment with the GI specialist and then hopefully I can talk him into sending my daughter to another doctor in the same area that is willing to come in and do the skin biopsy at the same time that she is having the intestinal biopsy. That way she only has to go under anesthesia once. It probably won't work out the way I hope, but at least I'm headed in the right direction (or so I hope lol)!!

Thanks again for all the good luck vibes!!

Lola B Rookie
Lola B
Posted

Hi. I've been reading through some of the postings on the site tonight and decided to join. Thanks for providing this forum for discussion.

My twelve year old daughter has had a strange rash for approximately the last year. It started behind her knee and initially looked as though it was a mosquito bite. As time went on, the rash spread the the fronts of her knees, elbows, back, hips, tail bone, shoulders - basically all over. Our GP diagnosed the beginning rash as ringworm, but when the topical hydrocortisone creams failed to clear up the problem, I began to wonder. The next diagnosis was eczema - steriodal ointments failed to clear up the problem either, nor did the 'holistic' medications/creams that I ordered off of the web. After much frustration, I finally insisted that my GP write me a referal to see a dermatologist. After several visits and more steriods, I requested a biopsy. The results came back today, and the diagnosis is DH - at least for right now. The doctor did another biopsy from a non-rash area to confirm and we're being sent for blood work as well.

The doctor discussed going gluten free, and I have no issue with this other than finding decent flavored foods, learning how to cook without gluten products and convincing a 12 year old that her life will continue without Pizza and Eggo waffles; however, he also mentioned Dapsone as a potential treatment. I'm wondering if anyone has taken this medication and can let me know about the potential long term side effects. From my initial poking around on the internet, it sounds quite dangerous - especially for a child. Any help or advice would be greatly appreciated! Thanks!

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