Replies to This Discussion

Permalink Reply by Rose Marie' on December 1, 2013 at 1:53pm

Hi

When my daughter first presented with alopecia it did start off as very diffuse, with no obvious bald patches...then it moved to the perimeter of her hairline and I'm afraid it went on to become AT/AU.  Since the first time she had signs of alopecia she has regrown and lost her hair many times.  She lost her hair at 12 ...she is now coming up 23 years old.  

Currently she is AU.

If I can help in any way just let me know.

Rosy

Permalink Reply by Amy on December 2, 2013 at 10:40pm

Thanks, Rosy.  Have you seen/heard of many other kids with diffuse AA?

Permalink Reply by Rose Marie' on December 5, 2013 at 3:03pm

Hi 

Yes, I have met quite a few with this type of presentation, but not all.  Many also begin with the round patches of loss.  

Hope you are doing ok.

Rosy

Permalink Reply by StephaniePA-C on December 19, 2013 at 2:22pm

My daughter was diagnosed with AA at 11 months old....though I believe, looking back, she has probably had it since 6 months old.  She just turned 17 months.  She has approximately 50% hair loss.  She started with 4 small patches in her right temple which grew into one large patch.  She has regrowth in her patch though it is the downy, non-pigmented hair.  She has several small patches (probably 10) elsewhere but hair is growing over the top of them so they are difficult to see.  We live in Michigan.  She has been to three dermatologists, including higher volume centers like University of Michigan and Lurie's Children's hospital in Chicago.  The opinions have been different at each dermatologist.....from "expect AU and a lifelong battle" to "this could all go away on its own and never come back".  What I have learned through my extensive research is that no one knows what will happen.  I have very little faith in medical therapies (and I am a physician assistant).  We have made lifestyle changes including dairy and gluten free diet, adding Omega-3 chewables (we use Nordic Naturals), using only natural shampoo and lotion.  We also do an esential oils head rub (rosemary, thyme, cedar and lavendar mixed with jojoba and grape seed oils).  We are trying topical steroids and have only been doing this a few weeks.  She was getting regrowth prior to starting the steroids.  I am not sure if any of this is helping or if we are just wasting our time and money.  I am, however, able to sleep better at night knowing that I am doing everything I can to help her. The healthy diet and lifestyle certainly isn't hurting anything so why not at least try right?  We also enrolled her in the Alopecia Registry at MD Anderson.  We ultimatey continue to pray for Dr. Angela Christiano and her research at Columbia University, which has had massive breakthroughs in the last year.  Good luck!

Stephanie