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Need help for 8 year old struggling to cover bald spots!
Thanks for all the advice, help, and plain ol support. My 8 year old daughter first developed patchy AA at 4 years old. With creams, the hair always regrew and it was forgotten. This latest episode that began 3 months ago has been especially difficult. She continues to get new spots that merge to form even larger spots. While it regrows in some areas, it falls out in others. She is creative with her headbands and barettes, but sees that it is getting more difficult to keep it concealed (~ 70% hair loss). She is not ready to share the extent of her hair loss with anyone except her immediate family. She is slowly warming to the idea of a wig (the idea of going 'natural' out of the house is out of the question for her), and was hoping to take her tomorrow to New York (or NJ or PA) to a place that specializes in childrens wigs and are sensitive to those with medical conditions. Does anyone have any place/person that they can recommend??? Any other advice??? TY!
Replies to This Discussion
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Permalink Reply by terri on
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Try freewigsforkids.org. New York City Andrew DeSimone (sp?) has a salon where he does beautiful wigs from his shop. He also provides free wigs for children. It was initially set up for children with cancer but he includes children with alopecia.
If it is not too late, please contact children's alopecia project. They have a camp in a couple of weeks June 16th- June 19th in Catskills, New York. It will be transforming for you and your daughter!! Please make every effort and sacrifice to take her there. I know it is short notice but she will be surrounded by beautiful children with all stages of alopecia. Your family will get the support you need and she will have a blast!!
Terri
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Permalink Reply by Rose Marie' on
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Hi
I think the wig of choice for your daughter should not be entered into quickly. I understand it is now possibly an urgent matter, but please investigate the alternatives available to you and be well educated about them before you buy.
My daughter lost her hair when she was 12 years old. She is now 23 years old. I understand where you and your daughter may be at currently. I can really only pass on what I did with and for her. Like your daughter she was not overly keen to be everyones centre of attention around her hairloss (which she didn't want and didn't want to advertise). But the reality is people will and are noticing and this will already be taking up a lot of your daughters thoughts. I would advise talking and then more talking. As this needs to be discussed with all the alternatives worked through and what they will mean to her. Even a wig is not an answer for alopecia it is just a tool on managing this condition. If you would like any help from me please feel free to contact me.
After a lot of investigation we decided a Freedom Wig was the best option for her. It was secure without glues and tape, it was fully customised, so we could get what we needed, it was comfortable and easy to clean, she could swim in it and wear it in ponytails. It really did everything we needed it to do, plus it looked amazing. I'll pop a picture up of my daughter taken recently in her current Freedom Wig. Pop into the Freedom Hair Facebook page and have a wee looksee at everyone wearing their freedom wigs...I think you might find it helpful.
https://www.facebook.com/FreedomHairNZ
Here is my daughter in one of her looks...with her Freedom Wig. (She actually never calls it a wig, for her it is just her hair).
Could luck with your investigations.
I think your closest Independent Freedom Agent would be Debbi Fuller from www.fuller-hair.com
Rosy
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Permalink Reply by mardy on
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I feel for your daughter.. I certainly know how she's feeling mine started at the age of about 9/10 yrs old.. my mother had thought my brother had pulled some of my hair out as we had be tussling around.. but that wasn't the case.. I just had some small spots then but it got worse in about the 10th grade....it is a very hard thing to deal with especially if you don't want your peers to know..i get my hair online at www.wilshirewigs.com they have some children wigs there also..here's a sample of some and they do come in diff colors.. Wishing her and you the best of luck in your wig search
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Thank you so much Terri, Rosy, and Mardy for your pearls of wisdom, having been where I am at one point and getting through it positively with your children! I did not get a wig this weekend. My daughter started wearing a 'headwrap' that stays on (she bought it Friday at Justice-multithread headwrap-I am now going online to buy it in a different color) while on a trampoline and under her horseback riding helmet, and even wore it to school today! It was much easier than trying to creatively cover the spots with broad headbands, barets (and more comfortable), etc, and as a result was much easier heading out the door to school as less time was spent looking in the mirror and asking if you could see the spots, etc ! I wish her classmates and friends would just know already about her 'hair allergy' so she would care less about them finding out, or feeling different, but she is adament about me not saying anything. It is possible that they do know and just don't bring it up. She REALLY doesn't like to talk about it.
It makes sense that a wig should be thought of as a tool and not an answer. CAP looks great - I am just not sure if with the short notice we can go during the workweek, and will look to local chapters, and look to go next year. I am also not sure if my daughter is ready to 'face' her alopecia and meet others with it at varying stages. I am not sure of the best approach-do I wait for her to be ready or do I not wait? BTW, your daughter looks beautiful Rosy in her hair!
I just ordered hatswithhair (sydney swim cap) so her scalp doesn't get burnt with swimming. I will look into the freedom hair (vs New Hair technologies, NYC, that I saw on the internet and looked good). Does anyone have any thoughts on this?And Mardy, the girl in your attachments looks like my daughter and she looks so natural with her hair! So I will look into this in a freedom wig since this is the name i keep hearing about.
Finally, I just noticed that the hair on her arms and legs is starting to grow in in patches. I wonder if this is a sign that her scalp hair will begin to grow. Oy, I know we have a long road ahead. I am so inspired by all of you and I thank you for all your support.
Patty
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Hi Patty
You're a great mum. It's so hard at the beginning wondering what to do and how to handle everything. I bet you aren't sleeping as well...I remember I didn't do so well in that department for a wee while when Libby was first diagnosed. Make sure you look after you during this process won't you..
I know that your daughter doesn't want anyone to know. But you as the adult already know that people know. What your daughter is doing is going into denial (which is very normal). She doesn't want this to happen to her so if she doesn't talk about it or let anyone else talk about it she feels like she is controlling things....but the reality is she can't control this and she needs support to handle that fact. This is the difficult bit about being the mum of somebody dealing with alopecia. The condition and the ramifications of the condition never ever go away for your daughter (you and I are able to walk away and get on with our life's without alopecia) but she has this with her every waking moment. So, she needs support (wanted or unwanted) to help her find her way.
I always realised that the tweens and teens are a time where children want to grow away from their parents (what is suppose to happen naturally) alopecia puts a little pressure on this as sometimes they are just so little that they don't have the life skills to deal with all they have to deal with. But the good news is you do. You do know better and you can explain this to her.
I use to say to my daughter, when she was adamant that she didn't want anyone to know, that it was too late, people already knew and all we could do was manage that to a place where she felt comfortable. People will fill in the blanks if you don't educate them...those blanks can be hurtful and scary for a young person who is trying to find her place in this world...altered by a condition she doesn't want.
It's not ok for her to feel she is the only person allowed to deal with this...this isn't just happening to her...even though I'm sure she feels like it is. Keep talking, keep loving, keep being there. Don't let her freeze you out of helping her. You know better as the adult and with her help you can find ways for her to manage this down to a place where life becomes a little easier.
Meeting others with alopecia is always a great thing. I was very fortunate in being able to surround my daughter with very positive role models who also were dealing with their alopecia extremely well. They have and continue to be invaluable sources of information and care for me and my daughter. So, do reach out but only when she is ready to be apart of that. You will know when the time is right to make this a positive step forward.
I love the idea of the beautiful scarf...and the swimming cap and hair...perfect. I know a few ladies that use to wear the New Hair Technology wigs....if you wanted to talk with them let me know and I'll pass on their contacts.
My view on wigs is that they have to tick as many boxes as possible for your daughter and yourself. Make a list of what is required. I did this when I first started looking at wigs...these were some of the things my daughter and I really wanted. Easy care and comfortable, secure during life activities (swimming, roller coasters etc.), looked realistic, needed to be able to be put into ponytails etc. I didn't want wefts or handtieing (for me these didn't look realistic).
Hope this all helps, hugs for you both.
Rosy
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Rosy-simply thank you for your thoughtful and helpful words. I am so happy I found this site and all the wonderful support, and knowledge, at the beginning of our journey. Thank goodness, too, for the summer being here at just the right time!
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You may want to invest in a product called Toppik. You can find it Sally's Beauty supply. It's fairly harmless(since you just sprinkle hair-looking fibers onto your scalp) and it washes right off. I'm surprised it hasn't been brought up. I use it and I can walk around with confidence since you would have to be staring at my head to see the bald spots
Goodluck
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