Terri
Terri
  • Female
  • Lexington, South Carolina
  • United States
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parent needing some advice on her child w/ alopecia

Started this discussion. Last reply by Kayla DeMarini Sep 7, 2008. 4 Replies

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Relationship Status:
Married
About Me:
I am a parent of a child w/ alopecia universalis. I want to obtain information to help her cope with this condition.
Are you age 18 or older?
Yes

Comment Wall (20 comments)

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At 3:32pm on October 7, 2008, Stacie DudaStacie Duda said…
terri, please understand that the worse YOU feel about the condition, the worse your daughter is going to think of it. also, understand that your child is healthy! my mother will stop at nothing to find out if there is something else wrong with me! she cried over my hairloss. i didn't. seeing her cry about it made me want to cry because i didn't like seeing her so upset over something i had no control of.
there is no reason to cry or be upset. hair is not a big deal! its "just" hair! if thats the attitude you portray, thats the attitude she'll follow.
i'm sure you are supportive of your daughter and want to protect her from anyone who will make her feel uncomfortable, but you have to understand that sheltering her and wanting to home school her will not solve any issues either. instead, tell her how amazing she is. tell her she hasn't changed as a person. also, tell her that "god created a few perfect people on this earth... the rest he covered with hair." ...that should make her smile if she is down.
At 2:24pm on September 29, 2008, TrinaTrina said…
Terri,

Thank you for the kind words. I know how your daughter feels as I myself dealt with Alopecia as a teenager. Just know that it will get better and she will be much stronger for it. Each lesson we learn tells something new.
At 12:59am on September 23, 2008, LeeLee said…
hello,
I got my hair from www.freedomhair.com
It was about $3600
At 11:42am on September 22, 2008, PrayerPrayer said…
my daughter is eleven, it has been hard on me, more than her and I am glad it is me more than her. She stays really happy and we keep as much normacy in her life as possible, swimming, amusement parks, sleepovers,etc. She was diagnosed in December 2007, so we go to the dermatologist monthly, however tend to get somewhat discourgaged, we actually are skipping the appt. for this month, because she has school activities and I dont want to disappoint her and forfeit them for the doctor appointment, especailly since I have not seen much progress. Do you know of many or any successfull regrowth situations.
At 4:47pm on September 21, 2008, PrayerPrayer said…
thanks terri for your comments. yeah alot of the hormones have already started kicking in, put that is normal so we seem to handle it well so far, Does your daughter wear any hair piece or does she go without?
At 1:25pm on September 21, 2008, TinaTina said…
hey terri!
thanks for the comment. I have a few different wigs that I love. two of them i got from a place called godiva's secret, and the one i actually wear right now is just from a beauty supply store. also, some of the pictures on my page are when i had hair, so the ones that look really really really real...probably are. haha! i actually just ordered my first vaccum wig, and i don't know if you have hear anything about them, but they are great! expensive, but worth it. maybe when your daughter gets a little older you might want to look into one.
how is your daughter coping with all of this? i know it can be so hard but especially as a teenager, its so important that she realizes how beautiful she is and that hair does not in any way make who you are as a person. if she ever needs anyone to talk to, i am here because if have gone through the worst of times, and still trying to work myself back up. there are so many resources and people, and great things that can help in her road to self acceptance if she hasn't reached it yet. =)
I do still have my brows and lashes, but think i am (semi) ready to handle it if they come out, which they may. like i said, there are so many great things out there, and if i need to wear fake ones for a while, i will.

welcome to alopecia world (sorry i wrote you an essay), and i know you will find great information and great people here who are so helpful!
At 11:47pm on September 20, 2008, MARIA (mom of Savanna)MARIA (mom of Savanna) said…
HI TERRI, MY NAME IS MARIA AND I HAVE A 6YR OLD DAUGHTER WITH AU, HER NAME IS SAVANNA AND HS HAD AU FOR 3.5 YRS NO. SHE HAS DEALT WITH FAIRLY GOOD FOR MOST OF TIME SINCE SHE HAS GOTTEN OLDER SHE HAS MORE ISSUES WITH IT. WE HAVE TRIED SO MANY DIFFRENT WIGS AND NOTHING HAS BEEN SUCCESSFUL, SHE JUST RECENTLY GOT A WIG FROM THE KIDS CLUB WITH THE HAIR CLUB FOR MEN, AND HAS ACTUALLY REALLY LOVED IT, SHE HAS WORE IT TO SCHOOL AND OUT IN PUBLIC, SHE USUALLY JUST WEARS LIL GIRL BALL CAPS BUT HAS REALLY ENJOYED THIS NEW WIG...iF YOU HAVE ANY QUESTIONS FEEL FREE TO ASK...GOOD LUCK WITH YOU AND YOUR DAUGHTER...BY THE WAY WHAT IS YOUR DAUGHTERS NAME??? mARIA
At 8:01pm on September 20, 2008, MeganMegan said…
hi terri,
it's actually my daughter paige that has alopecia areata. she's 5 and just started kindergarten. she's pretty ok with what is going on--i guess that's normal for most 5 yr olds. this is the 2nd time she's losing her hair. she wears a baseball cap to school, ballet, soccer and everything else! she wants to swim this winter, but i just don't know how to handle that one. we're currently treating her with olux-e, rogaine, and will start something called targetin next week. how is your daughter doing?
At 3:51am on September 19, 2008, Rose Marie'Rose Marie' said…
Hi terri

I'm happy to help. You might like to talk to fitzy, karen peterik, debbi fuller, donna schiallaci, cherlynz. They all wear this type of wig. Karen, debbi and donna are freedom agents in the u.s. and they will be able to help you with pricing etc.

I really understand how difficult these decisions can be for you and your daughter. Just take your time and talk to as many people as you can.

Libby my daughter has been wearing the freedom prosthesis for the last 6 years (since she was 12) it really has worked for her and us. We don't deal with tangling because the hair used in the is 100% virgin unprocessed hair. They are very secure, libby can and does swim in hers, goes on roller coasters, well you know all the things that kids should and do need to do. I help people with freedom wigs in NZ as you know and I'm happy to give you any information you need.

feel free to ask as many questions as you need.

rosy

p.s.

I'm a bit like you it has been 6 years since we started dealing with this condition and even though we do ok, there are still days where it gets to me.
You aren't alone.
At 9:21am on September 12, 2008, AshleyAshley said…
Hi terri! sorry it took me so long to get back to you. at New hair technology they will cut and style your piece in new york for no extra charge. i go up there and do that sometimes, but a few other times i have just had them send it to me and i've gone to a local place for the styling. i have found someone i really trust to cut/style/color my hair in my hometown (see my blog), so i often use them and just pay the extra money. sol at new hair technology does a great job with stylying as well though!! it just depends on what my schedule will allow, really.

please let me know if you have any more questions.
 
 
 
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