Replies to This Discussion

Permalink Reply by Pamela on September 19, 2010 at 11:46am

I have no OTC methods to help you, but I had to say after reading your post, it sounds like you have a daughter with a great attitude towards herself! You have done well for her to be comfortable enough to not wear her hat and show off her own hair and her head! Give yourself lots of credit for this.

Permalink Reply by KIM - Jessica's Mom on September 19, 2010 at 12:08pm

Mother's always blame themselves. I am blessed to have WONDERFUL insurance and we've tried EVERYTHING. Nothing worked. So we stopped! My Jessica is healthy and happy and has half a head of hair too. Relax, your doing great. There is no cure and nothing really makes hair grow, in my humble opinion.

Permalink Reply by Loraine and Sammy on October 31, 2011 at 7:35am

I have to say I absolutely agree with this comment ... thank you

Permalink Reply by Lisa Leppert on September 20, 2010 at 5:55am

I know not be exactly what you want to hear; but the "do nothing" approach may be the best thing. We noticed a small patch missing from Alexandria head right before she turned two. By Christmas she had no hair left on her head. She has been that way ever since and she just turned 5 last week. Sometimes her eyelashes fall out too. Those have grown back and a month or so later they fall out again. She is happy with who she is. I have thought bad about myself for not trying harder, but my next thought is... why put her through all the trials. She is old enough to know what is going on and I would hate her to keep setting her up for disappointment. We have two kids in our general area that had no hair July of last year and this year.. Hair. They did nothing. Alopecia is just one of those things that has no rhyme or reason. The best thing you can do for Rebecca is to love her and you seem to be doing a great job of just that.

Permalink Reply by Matt (Mikayla's Dad) on September 20, 2010 at 10:22am

I will chime in here as well. We tried EVERYTHING, steroid cream, topical creams, injections, homeopathic methods, OTC vitamins and supplements, and still, no hair, just pain and frustration. The very best thing you can do for your daughter, and it's what we learned the hard way, is to accept it. My daughter is older than yours, she started losing her hair at 11 and she's now 13, but she has taught my wife and I to be strong. She does wear a lace wig to school, but to church, at home, around friends, and even when we go out of town, she just wears a bandanna. We've had the same questions, and we just answer them with information. We tell them that she has alopeica, that it's not contagious, and that there's no cure. It's just something that we have to deal with. The way my wife and I look at it, the more we educate other people about it, the better things will eventually become.

You can try treatments, and as a parent, it's only natural to want to "fix" this, but even our Dermatologist told us that when hair starts growing back, there's no way to tell if it's the treatment, or if it would have grown back anyway. The medical community knows so little about this disease, there just really are no answers that are "right" or "wrong." The most important thing is that we love our kids, don't feel sorry for them, and don't make them feel like they're any different than anyone else. They know they are, the point is, it really doesn't matter, and that's how we need to make them feel. These kids are strong, they can learn to live with this...I think it's us as parents that have a harder time with it...we just have to be strong for them. :o)

Permalink Reply by Lynn Bell on September 29, 2010 at 10:11am

Hi, just wanted to thank you for your post. My daughter is 13 and was just diagnosed last week. Acceptance is very very hard. We are just so sad. She had the most beautiful, thick, wavy, light blonde hair. Anyways, just wanted to thank you for the encouragement to accept it. We're on our way there, too.

Permalink Reply by Julie on April 4, 2011 at 8:36am

Wow...I have to thank you for your comments more than a year ago!!! I don't know if you'll ever see this but in case you do I wanted to say thanks! My daughter is almost 13...we can still hide the patches with creative hairdressing but we went looking at wigs last week-end if and when styling won't cut it anymore. I found the experience...well this whole experience actually very painful...she has a much better attitude than I do...thank you for reminding me that I have to stop feeling so overwhelmed inside and start accepting.

Permalink Reply by kastababy on September 20, 2010 at 10:38am

Speaking as an adult who has lived with alopecia since childhood, I can offer a perspective from the "other side of the fence", so to speak.

My parents tried everything -- steroid shots, creams, oils, pills, Rogaine, you name it -- and the one thing that all of the treatments had in common was that after about 6-8 weeks, my immune system managed to build a resistance to any and every treatment we tried (talk about an overactive immune system!) I also have to admit to not being like the average 4, 5, 6, or even 10-year-old in that I took a proactive approach in researching my own condition and actually having a REAL dialogue with my dermatologist -- and not being afraid to question the dermatologist's decisions and walk out of the office if I felt that I was not being taken seriously when I asked a question. So when the decision was made to discontinue treatments of any kind when I was 13, it was totally MY decision and not the decision of my parents. Surprisingly enough, once I stopped treatments,my hair grew back altogether and stayed in until I turned 23 years old, when it fell out again for the last time. Now it's patchy at best, but I still don't pursue any treatments. I don't like how they make me feel for a solution that is temporary at best and ineffective at worst.

I would advocate asking Rebecca what SHE wants to do. If she doesn't want to take any treatments, honor her wish. It is very empowering to a child to be taken seriously when asked about something that very obviously affects her more than anyone. All too often I see and hear stories of parents who relentlessly pursue treatments for their children, despite the objections of the children themselves, simply because they would rather see their children with hair and not face the reality that perhaps treatment is NOT the best course of action. In that case, the parents are doing far more harm than good in the long run, despite the best intentions.

I hope this helps you when considering your decision!

Permalink Reply by Kathy De La Cerda on September 21, 2010 at 2:31pm

I' ve been so helpless too about my daughter losing her hair and now she is losing her eyebrows and eyelashes it hurts me as a mother to see her go through that and i'm hoping that society as a whole will accept our children and make known that hair isn't everything that they are still the same in the inside and are loved. We have tried everything for our daughter and nothing has helped the shots made her gain weight, moody, and depressed so we stopped taking her to get them but it's your decision to make if you should do it or not but make her feel loved and beautiful each day.

Permalink Reply by Julie on September 21, 2010 at 4:23pm

Dear Lara,

You sound like a wonderful parent so try not to be so harsh on yourself. Your daughter sounds as though she is dealing well with her hair loss and is happy to mix and socialise. It must be so difficult when comments are heard but perhaps if the people are within ear shot you could smile and explain to them it is alopecia. It could help normalise it for you and your daughter.
I found the hardest part of my daughter's alopecia was to just accept it - the uncertainty of it, the way it is practically untreatable and finding a cause has been fruitless. I do not say to give up on trying various treatments but relax. I wish you and your daughter all my best wishes

Julie
xxxxxx

Permalink Reply by Karen Leffingwell on September 28, 2010 at 9:45pm

My daughter was diagnosed when she was 8-- lost her eyebrows and eyelashes. The brows grew back and only a few lashes. Now she is losing the hair on her head-- it is about 80% gone. We are currently seeing a dermatologist who has us using a steroid lotion and Rogaine (men's because it is twice as strong as the women's). No sign of any growth.
As someone previously posted, there is no rhyme or reason to it. I've accepted that in my head, but my heart breaks when I see her looking in the mirror at herself. She is handling it well-- just started wearing a wig to school and wears bandanas around the house.
I think the best thing we can do is face the fact that we can't change what's happening and we need to all be comfortable with it.

Permalink Reply by Fiona on April 12, 2011 at 9:54pm

Hi Karen. I am in New Zealand and my daughter is the exact position. She is 10yrs old and in December last year lost her eyelashes. Then her eyebrows started thinning. We were grateful that her head hair remained in tact. However, this Sunday just gone she started losing clumps of hair - about a quarter to a third is now gone. It is at the nape/back of her head so she covers it with the rest of her hair at the moment. Last night she lost a small patch on top and this morning a small patch above her ear went. Tears flowed. We have found so much comfort and strength in this website and videos today!! We were comforted to see another one her age walking the same path too. Thanks for sharing your story. It is so reassuring to know we are not alone on the road.

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