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Mother of newly diagnosed

Discussion in 'Newly Diagnosed Alopecians' started by texaspaz, Jun 15, 2010.

  1. texaspaz

    texaspaz Guest

    I am the mother of a newly diagnosed 5-year-old. I am also a type A personality so I’m scouring the internet for any info possible and probably giving myself an ulcer by over-worrying about everything I see. We saw a dermatologist yesterday and it is just so hard to hear “Well we don’t know….not sure…we can try…wait and seeâ€. I know that this is all true but I’m hoping to get some more input and your forums look very helpful and informative and supportive.

    She was diagnosed with traction alopecia and alopecia areata.
    We’ve managed to reverse the traction alopecia by cutting her hair to reduce the weight and I’ve stopped putting her hair up or back. Which is a job with her crazy naturally curly hair. As a five year old she comes home with a frizzy, tangled mess from school. Does anyone know if this is something that she could outgrow? Anyone with the same problems have any ideas on hairdo’s. Are headbands bad? Can I make it worse when I pull on it to detangle it?

    She has two spots of Alopecia Areata. One quarter size circle on the back of her head and one area behind her ear that is spreading away from her ear. They gave us a prescription of Luxiq to start using.

    I just wanted to see if there are any hints or advice as we are just getting into all of this from those of you who have been there and know!! Some of the millions of questions that are rolling in my head:
    Do I need to do anything special/change with the shampoo and conditioner we use? Are there any side effects with Luxiq? What about chlorine in swimming pools.?

    Sorry, I’m just one of THOSE moms and am trying to get a grip on this. Thank you in advance for whatever advice you can give us.
    :dunno:
     
  2. beachlover24

    beachlover24 Guest

    Do you think you could use bobbi pins to just pull the front area back? I dont think this would pull too much.
     
  3. texaspaz

    texaspaz Guest

    That is a good idea. We use headbands but very sparingly because i'm paranoid about starting it again. All those baby hairs are growing back and I dont want that to change.

    And she doesn't really care how I fix her hair. She would rather not have anything so it's no big deal now but when the doctor said it wouldn't go away then I wonder for when she is older.
     
  4. nappeal

    nappeal Guest

    My understanding of any kind of alopecia, excluding fe/male pattern, is that is can come and go throughout life, be continuous throughout life, or happen once and never again. I have to admit tho that Traction Alopecia doesn't make sense in a 5 year old...I don't care how often you could put her hair up in ponytails or how tight you make them, traction alopecia usually occurs in women who consistantly wear very tight braids or hairstyles for extended periods of time IMHO. Have you tried wide cotton head bands? It could provid the coverage and put hair back while being gentle on her hair. I think that unfortunately with any kind of alopecia, you really must wait and see :( Hopefully a member with more experience will chime in. Just remember that in anyone, it could be a serious illness instead of alopecia.
     
  5. angel706

    angel706 Guest

    I might recommend that you try to find a copy of the book "Curly Girl" by Lorraine Massey. It has an entire chapter on dealing with curly hair and children. Switching to sulfate-free shampoos or cleansers, and conditioning her hair more deeply, may also help.

    Good luck!
     
  6. texaspaz

    texaspaz Guest

    Thank you for the replys.

    It has been hard and I didn't want to believe but over the course of a couple of months of what I thought were regular ponytails, pigtails and french braids we noticed her hairline dramatically receding. Her hair was down past her waist and thick and curly so we had to put it up or it would get so tangled and crazy. After the doctor told us we chopped it to her shoulders and stopped putting it up. It took about 2 months but it has grown back to fine wispys. I just want to to the best I can for it not to happen again.

    I know its different from her Alopecia Areata but i'm just hoping to get whatever advice I can. We started her Luxiq foam treatments on two spots last night. I'm crossing my fingers.

    And You are right, I am blessed to have her with hair or without. And it could be something much worse. I thank God for what we have.
     

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  7. julielou

    julielou Guest

    Oh, bless her little heart. You could just gently gather it back into a ponytail rather than pull it tight.

    Joann, one of the moderators on here developed Alopecia Areata as a young child. Her posts are inspiring and I'm sure when she sees your post she will add her extensive wisdom.
     
  8. Joann

    Joann Moderator

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    Thank you for those kind words Julielou :)

    Welcome to HA texaspaz :) I'm sorry to hear about your little girl's hairloss. She can recover from the traction alopecia if don't do the braiding etc.

    My daughter has very thick, naturally curly hair. When she was younger it was very difficult to look after because it was prone to frizziness & tangling. I found that cutting it a little above the shoulders and having it thinned a bit helped so much. It certainly made shampooing and combing out so much easier. She could wear her hair down and it looked so much neater.

    The Alopecia Areata is another story. Your daughter may only ever have those 2 spots which fill in and that's it. However neither I nor anyone else can predict her outcome much as I wish it were so.

    There are treatments that are offered for Alopecia Areata. All come with side effects so you want to be very careful with any and all treatments being considered especially for a growing child.

    You should be aware that at the present time there is no sure cure for Alopecia Areata. The treatments may regrow the hair that has been lost but unless the immune system stops it's attack on the hair follicles new hair can be lost and even the regrown hair.

    I understand completely how frustrating and disappointing it is to come to terms with those facts especially when it's your precious daughter. Still there's room for hope with Alopecia Areata because many do recover and keep full heads of hair. I hope this is the case with your daughter.

    I have never used Luxiq to treat my own Alopecia Areata but have heard of it from others who have. We all seem to be different what will or will not work to regrow the hair lost from Alopecia Areata . I have met people who tried treatment after treatment with no success and others who regrew an entire head of hair without trying a single treatment. That's how unpredictable this condition is.

    Here is a link to info about Luxiq:
    http://www.luxiq.com/

    Please do get in touch with me if you have any other questions or concerns. I'm glad to help.

    Hugs,
    Joann
     
  9. texaspaz

    texaspaz Guest

    Thank you for that. Thank goodness the traction alopecia has been the easiest to treat. We stopped the pony tails and french braids. We are headband girls now. We went and got her hair cut and thinned so its no big deal to let it go as it will. And the upside is she's got a cute new hairstyle that is very managable.

    As for her alopecia areata, as of last week i'm happy to announce she has some baby hair coming back in one spot. I was over joyed to see it. We stopped the topical steroid and stopped the dermatologist who was less than helpful. Her pediatrician actualy caught hight thyroid levels in her labwork and sent us to a specialist. He was great and immediately started her on thyroid medication. He wouldn't give us any word one way or another about hairloss and thyroid being connected but she has been on her mediacation for almost 2 months and we have some baby hairs so i'm not questioning anything. I guess I'm still crossing my fingers that it grows back everywhere but I'm also hoping the thyroid thing is something she could outgrow so she won't have to medicate forever.

    I'll keep you posted. And thanks to the wonderful words from this website!! You ladies are wonderful for sharing and caring!!

    Dios te bendiga
    Xenia
     

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