Replies to This Discussion

Permalink Reply by Tracy on February 27, 2009 at 5:34pm

Ugh, my 8 year old daughter has had it for about 10 months now. Starting with one spot on the back of her head, then 2 spots then suddenly the spots turned into a lot and yeah. I can no longer really hide her spots, I have bought her elastics that have hair on them, they look cool and help hide the fact that her hair from her hairline halfway up her head is gone. And now people are noticing, so I dont say anything unless someone asks. Everyone stares, and they do because nobody knows what Alopecia is unless it happens to them. Fortuneately for me I knew what it was before Brittany got it and I knew what it was before she was diagnosed. Its hard, very hard. And really, just openly talk about it when people ask. People assume that they kids are sick. Its ignorance and it sucks! All I do is not say anything unless people ask. *sigh*

Permalink Reply by Melani Molina on March 22, 2009 at 10:13pm

Tracy,

Thanks for the reply. Your right the ignorance does suck! You are very lucky to have known about it before hand--that makes all the difference! I wish you and Brittany the best!

Melani

Permalink Reply by Melissa on February 27, 2009 at 6:45pm

Melani:

I know where you are, we were there just 5 short months ago. My daughter Emma (9) had quater size spots that would come and go since she was 5. Then this past October shortly after school started it became more aggressive and she has now lost about 90% of her hair, but she does have some patchy regrowth stimulated by fluocinonide and many prayers.
Anyway, as far as informing her classmates Emma opted to take the proactive route. In November, after she had been wearing headbands/scarves that sound similar to what your daughter is wearing we made a little presentation to her class. We used the video from the Alopecia Aerata Foundation and it was very positively received. Her classmates have even been advocates for her. She goes to a really large school and their are so many kids she comes in contact with that do not know about her Alopecia, but her classmates help explain if they get questions and she is very comfortable at school. In her classroom she goes without anything covering her head alot of the time. She is currently wearing a hair piece we found that velcros into hats and we've been able to find many cute hats that we sew velcro into and she is ready to go. I was very apprehensive about taking the proactive route and wanted to protect her as long as I could without sharing everything, but she has been much stronger than I and the video from AAF was very helpful in making her feel comfortable with her Alopecia. She has always felt better with a group once she knew that they knew what was going on vs. wondering what they were thinking. Hope this helps.

Melissa

Permalink Reply by Melani Molina on March 22, 2009 at 9:56pm

Thanks Melissa--it actually helps me alot just knowing how other parents and children are handling this. I will keep y'all in our prayers.

Melani

Permalink Reply by Beth Breslow on February 27, 2009 at 6:54pm

Hi Melani,
Just 1 1/2 months ago my almost three year old started with one patch on the back of her head...since then she has lost almost all her hair on top and the rest has thinned out like crazy. I have really been stuggling with the whole shedding process but one of my dr.'s gave me some good advice. She told me to get my daughter's hair short. I don't know how long your daughter's hair is but by cutting it short my daughter's hair (what's left) looks 100 x's better. You might want to try. My daughter is in gymnastics 1x/week and every week she comes in with less and less hair....this week she'll come in with very short hair. One of the moms is obnoxious and just stares at my daughter. I wish she would just ask if Melaina was ok, or what is going on with her. Instead she just stares and I am so angry I could scream!! Hang in there....i really wish it was my hair and not my innocent baby...i'm sure you feel the same way. My prayers are with you and your family :)

Permalink Reply by Melani Molina on March 22, 2009 at 10:03pm

Thanks so much Beth. I wish you didn't have to have that experience with that ignorant mother. I wonder is she is just scared to ask you, but I know what you mean, it would be so much better if she did. I haven't had that experience yet with any adults, because Genevieve's is still very coverable by headbands and the rest of her hair, but if it comes to that, I may have a little more trouble than you biting my tongue! I think that you are handling that situation very well, but I can see how it would drive you crazy. Cutting the hair short is a good idea, that might be something we have to do in the near future. And I agree with you, I would take this on instead of her any day! I really wish it was me and not her--I don't care what people think about me! We will keep y'all in our prayers as well!

Melani

Permalink Reply by Carrie on March 26, 2009 at 6:29pm

We have tried to convince my daughter, Emi, to cut her hair short too, what ever's left of it, but for some reason, she just wants to hang on to the pieces she can..so we don't push it. Hard though, knowing it would probably look better ;)

Permalink Reply by Sarah B. on February 27, 2009 at 10:59pm

We are going through the same thing. My daughter Abby is 4 and was diagnosed at age 2 with AA. For the longest time it only affected one side of her head and we did a lot of comeovers to cover it, but recently it has been spreading to where we are unable to cover it. For now, she is pretty oblivious about it as well and is not too bothered by it at all. She is aware she has bald spots, but is as girly as can be. She does not really like hats, and I do not want her to even think we are ashamed, so we let her just be 4 and go out as if nothing is different. In the summer we make her wear hats when she is going to be outside for a while, and she is aware that it is to protect her head from burning. She is in gymnastics and preschool and has just recently had kids who are starting to ask questions. She just tells them she has bald spots and this seems to satisfy the younger kids, but I worry about what will happen as she gets a little older and plan to deal with the issues as they come along. I too get more frustrated with adults who stare. I have even had a few mutter under their breath to other people around about my daughter, but don't even bother to ask me about it. I am more than willing to tell her story to those who ask.

Permalink Reply by Melani Molina on March 22, 2009 at 10:10pm

I am glad to hear that your daughter is oblivious to her condition. I think that is the way it should be, kids should never have to worry about such things. We have been covering Genevieve's spots with large headbands--mostly to protect her from the comments of others. We also do not want her to think we are ashamed or want her to feel any shame about her AA. If she doesn't want to wear anything, fine. I will just have to deal with the stares as they come. Hopefully, like Abby, she won't even notice them. She told me that 2 friends at school now know and she asked them to keep it secret. This was of her own accord and I certainly hope it wasn't out of shame. I have to let her have her own method of dealing with this and we will support her whatever she does. Thanks for sharing your story with me. I wish y'all the best

Melani

Permalink Reply by Pam (Julia's mom) on February 28, 2009 at 2:02pm

Hi Melani, My daughter ( 7 yrs old ) has also lost a significant amount of hair suddenly and does not have any left on the top. I covered it with headbands as long as I could. I decided to take her to a place where they bonded a headpiece on the top of her head before she loses it all. She goes back every few weeks to have it checked and to service the piece if needed. She does extremely well with this. I also have a full piece on order for her as well in case it is needed in the near future. I have been totally honest with her about the potentially losing all of her hair. We have struggled with only patches in the past (since she was 2 yrs. old), so I had to prepare her more this time. I find that adults ask more questions than kids do at this age. A few have asked me if she was sick... I know that we want to protect our children, that is why I encouraged her to wear the piece for a while. I don't think they fully understand how cruel others can be. Children are such trusting souls. At this point I am more affected by this than she appears to be. I do talk about it to anyone who asks and I encourage my daughter to talk about it as well. I think it helps her confidence. I know this headpiece helps too! Let me know if there is anything more I can do to help you..... Pam

Permalink Reply by Melani Molina on March 22, 2009 at 9:53pm

Pam,

Thanks so much for sharing your story with me. Fortunatley, right now, the headbands are still working. But, I don't know how long it will last. The pediatric dermatologist is 'cautiously optimistic" she won't lose it all, but I am not feeling the same way. I really hate this, and Genevieve still has a lot of hair. Are the hair pieces your daughter gets expensive? Would you mind sending me some info. on them? It would be greatly appreciated. Thanks, and I wish y'all the best!

Melani

Permalink Reply by Danielle & Lilly on March 7, 2009 at 5:36pm

Hi Melani. My story is like most of these parents who have answered your question. My daughter Lilly (she is 7 now)started with a patch about the size of a quarter when she was 4. We used anthralin and it grew back and in 2 years it came back and has progressed ever since. We have used anthralin but that became too much work for the results. For every spot that hair grew back, 5 new spots would pop up. We couldn't win for losing. So we started on steroid treatment. We currently see a specialist at Duke. However, she doesn't know that we have stopped the treatment. We stopped the treatment because Lilly was vomitting and had bad diarrhea!!! It took months for us to figure out that the medicine was causing this. Now Lilly has lost over 75 ercent of her hair and has been wearing head coverings for at least a year. We are going to be getting a biomatrix soon. We have had to deal with ugly comments from children at school. We have learned a lot from our psychologist. He says we can't protect Lilly. I have a lot to say but i can't say it all right now. We have had a rough time with this disease. However, Lilly is very excited about her biomatrix! She is also happy about meeting children like herself. If you ever feel that your daughter is being bothered by this emotionally, you should look for a psychologist. They can help her and you. Our psychologist has made us stronger.

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