Insights Requested: 9 year old girl newly diagnosed with AA-Ophiasis

Hi,

My daughter started losing her hair in December. What started as a few disparate patches has now progressed quite a bit. We have been to 4 pediatric dermatologists and she is currently being treated with oral steroids, topical steriod cream and an irritant. We can still hide the losses with a well constructed and low hanging pony tail but thr loss is progressing each week.

Could someone help me to understand what cosmetic options are best for 9 year old little girl who is very sporty, active and terrified of anyone "knowing". I have researched wigs, hair pieces etc but am confused about where to begin. Money is no issue--- I just don't care what anything costs if it will help my daughter to feel "normal" as she learns to cope with the uncertainty of this disease.

Any advice on what is best, what should I look for and/or avoid and anything else would be extremely helpful.

Thank you!
Maureen

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Hi, my daughter also began losing her hair around this age. She has since lost all her hair completely, grew it back completely, and is now at 70% loss again. Both times we went through phases of covering/hiding the spots. Toppick is a great product that covers bald spots well. We used clip in extensions to build hair and hide spots. We have now transitioned to a wig for the second time. It's tough! We had a traditional style synthetic wig the first go round, and have opted for a lace front glueless this go round and my daughter loves it. It is human hair. Please let me know if I can provide any more info. My daughter grew her hair back the first time with DpCP. We tried prednisone but it all fell out within a week of stopping. Does your daughter have food allergies, thyroid isse, low Vit D, etc... Was there a trigger that you can identify. Nice to meet you.
Hi- thank you for your response. We have been to 6 dermatologists who have all said that this is genetic? I can't think of something that would have triggered it? Are there things we should explore here?

How do I go about finding natural looking clips for a really active little girl? Has anyone ever used fake eyelashes for a 9 year old (he one eye is itchy and red from not bring protected).

Any thoughts are appreciated. Thank you!

I think a possible trigger for my daughter may be lyme disease.  She had flu like symptoms, went on an antibiotic, had a rash, had random joint pain and swelling, and a few months later we found her first spot.  Food allergies are also something to look into.  I believe there is a reason, something in the body is off.  She also has low vitamin D.

  I ordered the extensions off of Ebay.  They were not expensive and helped so much. 

my daughter also has AA ophiasis patterned hair loss, she is very athletic and refuses to wear a wig. We use the chemo beanies from www.chemobeanies.biz. I have posted some pics of my daughter on my page If you'd like to show them to your daughter as a possible option. Jaeden loves them. We are also doing UVB therapy called an Eximer Laser, we use biotin and a children's probiotic to help with the digestive tract. We are having a very positive outcome with the Laser but as you know AA is unpredictable and this is our first experience with regrowth since she has lost almost 90% of her hair. I am also posting her progression pictures as she continues with therapy twice a week. We chose to go with the Laser Becuase it is much less painful than the injections and she had the same growth response with the laser as she did with the injections. We did both at the same time in different areas and the growth response was exactly the same!

Hi, Maureen! My 6 y.o. granddaughter is AU. My best advice is to be as encouraging & positive as possible, and to follow your daughter's lead. There are many websites that are helpful. Try naaf.org (national alopecia areata foundation). They have a wealth of information, including websites for caps, scarves & wigs - plus programs, like NAAF pen pal & free informational brochures & DVD. Also, look at childrensalopeciaproject.org. There are several places that off ree wigs for children: freewigsforkids.org, hairclu.com/hairclub-for-kids & wigsforkids.org. Feel free to friend me - maybe our girls can correspond :-)

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