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Tears, Fears and uncertainty
Hello friends,
I come to you today just so upset and heartbroken. I have Alopecia Totals, but that isn't what is upsetting me. I have accepted my condition.
However, My 10 year old daughter has just started losing her hair about a month ago. I sat up with her last night as she cried unconsolably. It's falling out so fast for her - just like it did for me 17 years ago. My heart is breaking for her and I'm so angry and frustrated because there is nothing we can do. It's just so unfair. She said she doesn't even feel like herself anymore because her hair is disappearing.
As parents, how do you keep your child encouraged through a hairloss transition?
How do you handle the "I don't want to go to school like this" issue?
Thank you in advance for any advice you can provide.
Replies to This Discussion
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Permalink Reply by Saffron on
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I really don’t have a leg to stand as I don’t have children and I didn’t start losing my hair till I was middle aged. But I can’t help but think that the scariest part of going to school with this issue is being teased.
One way to stop teasing is to come out in the open i.e. something like “Show & Tell.” Many children bully and tease because they are frightened of something that is different or something they don't understand. I don’t know if your child is gregarious enough to stand in front of their classmates explaining what is happening, what the disease is and it’s statistics and to answer all those questions their curious classmates have. Also being somewhat light and humorous as far as “the advantages of wigs”. And then to end it with asking their classmates for help to stop and teasing before it starts.
If your child can handle doing this I think it would make a world of difference in their fear of going to school. Like I said I may be way off base with this but somehow I don’t think so. Regardless I wish your child love and strength.
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Permalink Reply by Sandy K. on
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Love the "come out in the open" idea! I am hoping that one day, my daughter will be ready to do exactly that. :) thank you
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I am so sorry to hear this. I have a 2 soon be 3 year old daughter and could not imagine, I have Univeralis at 43, but am ok. Find pretty scarves and hats, maybe one of these things can become her signature style, I know it sounds lame at a time like this but like you said what can we do. Also look into wigs, at 43 I hate the darn things myself but have grown more in like with them,maybe find cool colors and styles, maybe the colors couldn't be for school but fun options will help. If this is your daughter's fate then in time she will accept it like her mama and not need any adornments. So you stay strong and she will see this. She's tough like you down deep but still so young she will be fine but still is in the denial stage. Acceptance will take time.
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Hi
I'm terrified that my grandchildren will get this and wont know how to deal with it. Hoping that knowing its possible will help with the shock. I didn't have anyone in my family with it, so it was a major shock when I started losing my hair and it was all gone in 3 weeks. I am 58, and I can only imagine how traumatic it is for a child.
As they get a little older, I will talk about it more.
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Permalink Reply by leah on
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Hello!
My heart goes out to you guys, I don't know as child or children but have a lot empathy for. I wonder if maybe she'd feel more comfortable wearing a cute winter hat or beanie? Maybe try set up your own children's support group, if can't find and she could possible meet others. That helped me a lot as an adult and seen children light up around others too.
I think there is now an alocepia doll and not sure about movies. The starting of stages of alocepia that are so difficult, how life can be and hard lesson at young age. But remind her around 2% population go through, not alone could maybe go the kids camp and NAAF summer to meet. And some people hair does come back. It may feel like end of her world and am sure you are big support. Plus model for her, I'm thinking good thoughts for! Another possibility Skype with others, Facebook groups, etc. a salon here in Seattle skype with a girl in south that has. An inspiring book by one of members: http://www.headonpublishing.com/
* https://www.naaf.org/ella-doll-request
inspirational child with alcoepia:
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Hi Sandy,
My son was 8 when he was diagnosed with AU but started loosing eyebrows at 7. He will be 10 in January. From what I have read I think for boys it really is easier. That or my son is just super strong and I don't realize it because it has not been that bad for him. He felt so alone. We have since met 2-3 kids with AU but no boys his age who speak French (he does not speak English)
Of course at first it was really difficult, and he still struggles, but it isn't such a big deal anymore. From the beginning we tried to laugh about it. (not like making fun of the illness but like dedramatizing the situation) English is my second language so I hope that makes sens to you.
This year I realized that out of everyone in our family it had been hardest on me. I cried so much, even if I knew it was not harmful physically. I had to mourn what my son looked like and get used to his now beautiful bald head and face. The loosing hair part is dreadfully sad. Hair all over the place, lack of concentration during exams at school because hair fell on his desk, being called ugly a couple of times etc.
We discovered Buff bandanas and Félix loves to wear them. He calls them his head underwear because he feels naked without it. After 2 full summers of AU he has slowly started walking outside with nothing on but only directly around the house and when no one is around. Baby steps, but in the right direction. That's the important thing I think.
The moment I stoped making a big deal about it (like talking about it all the time, crying etc) he started to be better. More confidence in himself etc. Still today he does not like to talk about it but his circle of trust has gotten wider (close family and grand parents and now certain cousins and even a couple friends) where he does not wear anything on his head.
For fall and winter we have a couple of super cute hats that fit his style (too cold for bandanas), hoodies etc.
Hang in there. Be there for her as I am sure you already are. Listen. I have a new friend who has a daughter with AU. She made her really beautiful scarves / bandanas that look like long braided hair. Maybe your daughter would like that?
Your heart will break no matter if you have it or not because we all want the best for our kids, for them to be happy, healthy and loved. Take care. Mélanie
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Hello, all!
My name is Toni and I have AA. I also work for a company who provides Cyberhair in Denver. There is a not-for-profit called "Just Live Life Kids" which will provide one free hairpiece to one child in Colorado who has medically related hair loss EVERY MONTH!!!! Sometimes we go without a recipient... We love to help anyone that we can with Cyberhair or other options and there are many! We also have a support brunch quarterly. Please let me know if you are in Colorado and we would love to meet you.
If you are in another state, please locate the nearest Cyberhair provider to you (link on JLLK website) and contact them with your application for the opportunity to get a free Cyberhair piece for a child in need.
justlivelifekids.com
cyberhair1.com
phiofco.com
Big hugs!!!
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My daughter started losing her hair at age 10 as well. She handled it better than we did. Absolutely heartbreaking. All we could do was let her know how loved she was and that it was not her fault that this was happening. We tried to encourage her not to shy away from anything that she wanted to do because of her condition.
During that time we looked to Pediatrician, dermatologists, endocrinologists, naturopaths etc. We landed on an Ayurvedic treatment that did not stop the hair loss but slowed it down to the point the dermatologist wanted information on what we were doing. We determined through our research that there are many contributing factors to an autoimmune response of hair loss. In working with a bio identical hormone replacement doctor we found the big two for my daughter were the presence of thyroid antibodies and a gluten intolerance. She also had low levels of zinc and copper in her blood that also contribute.
She eventually lost all of her hair in her head, her eyebrows, and arms. She was a very tough kid and did not miss a beat playing soccer. We provided her with a couple of wigs to wear. There was some frustration and total breakdown crying.
She has a great group of friends that have been very supportive. She has had some difficulties to contend with that mostly revolved around dietary restrictions, regularly taking supplements, soccer and swimming.
She is now 15 and is still wearing the wigs. Most of her hair has grown back but she is not quite ready to show the world.
I guess the point i am getting to is that this does take an emotional toll on all of you. Your strength and support for your daughter will shine through in her growing through the difficulties of the changes we cannot control. Don't let her back away from the things she loves and she will find a wonderful life. As you can see, and she should too with the list of respondents, that she is not alone...and there is comfort in that. My thoughts are with you.
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Thank you so much. I truly appreciate you sharing your story (and your daughter's).
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Hello - I have a 17 year old daughter who has struggled with Alopecia since she was 2. we have tried everything and used every kind of hair extension, hat, etc. that we could to manage over the years. 2 1/2 years ago she lost 90% of her hair and she wears wigs now.
I can relate to your broken heart. I would do anything to take away the sadness and tears that my daughter has. I too have felt so much anger and frustration and have researched everything, tried everything. We as parents want to take away pain from our kids and make them safe and happy. We want to fix what hurts them - and we just can't with this.
I tell myself and her all the time that she is healthy and it can be so much worse - but somehow that just doesn't help - because let's face it - being a teenager is hard enough without being bald - especially being a girl.
What I have done is to help her accept. In me helping her accept I feel that it has also helped me to accept as well. I let her cry - I hold her and tell her to let it out that yes it sucks for sure. BUT that she needs to be strong. That this is what her life is - she has no hair and that we are not going to waste any more energy focusing on trying to fix that - trying to grow it back... it will grow or it won't. Right now it's not growing - so lets focus on making her feel as beautiful as she is. She won't wear scarves or hats - she wants to look like she has hair - that is ok! So - we have researched and we get the best wigs we can find - we set up a wig station, products, etc. We have a nice day wig and a night wig that she can use if she has a sleepover at someones house or has someone over.
It has taken these two years to get there - but I do see her smiling more now and I don't allow any pity parties anymore (for either of us).
She is one heck of a strong young woman - she is active and plays high level sports. She has many friends and although she did miss a couple months of school when the hair first came out and we didn't have a good wig - she has bounced back and she talks about her alopecia now. Everyone knows she has it and she talks openly about it with anyone. That is a huge change!
Your daughter has you to look at as an example - so that is huge! Acceptance is the key I think - helping her accept and adapt so that she can deal with it and smile again. And yes - it could be so much worse.
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Thank you for sharing your story. You are an incredible Mom, and the strength your daughter shows is evidence of that. :) Thank you again.
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