Hello All!!

Kimberly - posted on 02/04/2009 ( 5 moms have responded )

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I'm sorry I haven't been active yet in this group. I started it to hopefully find more moms going through this and have gotten very busy.



I'm a 33 year old mother of a 12 (almost 13...yikes!) year old daughter with Alopecia Universalis. She was 3 yrs old when it started thinning and getting bald spots. Within 3 months she was totally bald. We tried the creams and sprays (minoxydil) but nothing worked. We decided to let it go and see what happens.



Just before kindergarten started, it grew back a little but shortly thereafter fell out again and has been gone ever since. I think the fact that she was so young when it happened helped alot! She never had any real problems with the kids in school...they only knew her without hair. She has had occasional problems with mean kids picking on her but has done very well with it.



She pretty much always wore hats in elementary school. We even got a cute one with hair attached (www.hatswithhair.com) which she absolutely loved! As she got older she really wanted a wig so we looked in Locks of Love. She received her first Locks of Love wig when she was about 9 and she is on her 2nd one right now. She is very active in sports and has no problems. It is great!!



I look forward to being able to keep up with this group more now. Thanks!!

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Carla - posted on 03/16/2009

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My husband and myself had thought about the same thing. I even brought it up to my doctor and she was on board with the idea. All though, considering it can cause skin damage to her she suggested a sun light. They are approximately $169 @ bartells or your regular drug store. I do know that there is a new test out check for Vitamin D levels however, I do know that it is an expensive test if your insurance does not cover it. But considering the diagnosis codes they would use I'm sure that it would be covered.

Its worth a shot. ( no pun intended )

Kimberly - posted on 03/16/2009

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My daughter also has it on both sides of the family. My father has it and my daughters great Aunt (I think) on her dad's side had it. I know the doctors have always told me that it does tend to be genetic.



The sun used to help my daughter when she was young. I think it was because she used to actually used to go outside without a hat or wig. Now that she's older, she won't even consider it. I would like to get her into tanning (occasionally) but I also don't want her to have problems with her skin when she gets older.

Carla - posted on 03/16/2009

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Hello! I am still new to this Mothers Circle "group" thing. Anyhow, I joined because my daughter who will be 11 in June and in Sept will be heading into (scary) middle school, has Areata. She started late October early November of 2007, when she was in 4th grade. It started w/ her bangs and behind her ears then progressively got worse. By Christmas of '07 was over 70% hair loss. However, she did have hair growing back but the end result was the same. Only this time it grew to around 1/4 of an inch and fall out. We ended up shaving her head the first weekend of the new year to hopefully achieve even growth. Our Dermatologist rx'd us The same - minoxydil and it does seem to do a little bit however I have also tried a very light oil and lightly massage it into her scalp -when she lets me that is-and that by it self has stimulated regrowth.

Now, I am not sure if this has really anything to do with it or not but I have also noticed when there are periods of a substantial amount of sunlight-she seems to have more regrowth then fall out. (this could also just be wishful thinking on my part)





*I do have a 2 question's though- Does anyone in here have it with in their family? My husband and I have it on both sides. His grandmother and cousin as well as 4 great aunts as well as my late great grandmother and possibly my uncles. So our daughter's chances of growing hair like every other child might be shot out the window.

*Also-How does Lock of Love work? I was under the impression that you had to have cancer in order to receive a donation. Am I wrong on this??





Sorry about rambling on here-its just nice to talk to parents who actually can relate to the situation of trying to raise a strong, beautiful, happy child with this condition.



~Carla

Washington State

Amanda - posted on 02/05/2009

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Hello, I just joined the group today and thought I would reply. My daughter is 11 years old and has had alopecia since 1st grade. She too, has had many occurences with regaining and relosing her hair. It is very hard for me as well. She doesn't seem to mind as much now as she did at first. We have started a new tradition over the past few years that really seems to help her deal, we go every new school year and she gets to pick out her new wig for the school! She loves it! It has become something she looks forward to every year. I am like you when it comes to preparation though, she has almost a full head of hair for the first time in many years and I, too, am waiting for the day that it starts to fall out again.

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Hello Kimberly,



Reading your post made me feel a bit better about the challenges my daughter Cadence is going to face. Cadence started losing her hair around 9 months old. By a year old all hair was gone,including her eyebrows and eyelashes. She just turned 2 last November and has no real signs of regrowth. We don't know yet if she has Universalis or Totalis. Too young.  I know at daycare the kids don't think twice about Cadence not having any hair, they have always known her to be bald. But I do worry about when she starts school. She doesn't seem to care, when she sees me brushing her older sisters hair, she just says "Alopecia mama". She knows she doesn't have hair and doesn't seem to think much about it.



I'm hoping its like your daughter and the kids at school don't pay much attention. Did you go speak to the class on the first day of school or anything like that?? 



Also, another question. Has your daughter ever had a fine peach fuzz come in on her scalp or anywhere else? Cadence has very fine blond hair that comes and goes. She also has blonde side burns and other areas like her legs and arms. Didn't know if this was normal or if it was a sign that it could come back. At this point, my husband and I feel that it would be better for her not to get hair back and lose it at a critical age. 



We figure we will leave it up to her as to whether she wants a wig... what age is a normal age to get fitted?



Sorry for the rambling... just nice to meet other families going through the same thing. I know when we are out in public, most asssume she is on treatment. Any help or answers could give is greatly appreciated!   Thank you for alopecia moms... its been comforting to share stories.

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