another diagnosis today

Discussion in 'General Parenting' started by Nancy423, Dec 13, 2008.

  1. Nancy423

    Nancy423 do I have to be the mom?

    but not one that will help. I knew it was coming but I guess I didn't want to believe it. In May, she started losing her hair right down the part. In Aug/Sept it started thinning. In Oct she was bald and the eyebrows and eyelashes started falling out.

    difficult child has alopecia universalis. So on top of all her other problems, she has absolutely no hair anywhere on her body. The derm says it was probably an overreaction to a fungal infection that caused it. In children, there's less chance that she'll grow the hair back compared to those who lose it as an adult.

    she's got some real bad self esteem issues and we've talked several times in the last 6 months aobut how she's feeling ugly and wants her hair back. I've heard her crying a few times but she won't tell me why.

    She must also have some sensory issues too because she never liked barrettes, hair bands or pony tails. She only wears bandanas etc for short times. We did get her some soft winter hats to wear, but she'd much rather hide under a sweatshirt hood. She goes bald in her LDSC classroom and she says she's comfortable with that.

    I'm worried that she'll spiral down now that she heard her hair may never grow back. I told her we could always buy some (She did laugh at that) but we both agree that she'd never wear a wig. The doctor wants her to use the men's rogaine and a strong cortisone cream for the next month to see if it helps.

    We looked online and saw many pictures of other kids/teens that are affected by this disorder. I was upbeat and positive telling her how she's as pretty as always. How she's no different now than when she had hair. I asked if she still liked the same foods, the same color, and same activities. she said yes. I'm also trying to find a message board for her/us to participate on (she was open to that idea) but I'm afraid that it might not be enough.

    Any suggestions would be helpful!
  2. Andy

    Andy Active Member

    Oh no! What a hard thing for her to adjust to. Hugs to you both. I don't have any suggestions but will keep her in my thoughts and prayers.

    Maybe take her to a material store and test different types of materials to see if there is one she doesn't mind on her head. Then make hats and scarves out of that material?
  3. tiredmommy

    tiredmommy Site Moderator

    What a difficult situation for an eleven year old to face! I hope that the treatments yield positive results.
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Has she ever had any genetics testing? Maybe there is some genetics reason for all this. My son had it done. It's just a blood test...
  5. klmno

    klmno Active Member

    I'm sorry she has to go thru that- and it would be a very difficult age to have to face that. I hope she can open up and talk to you a little more about how it hurts, so she isn't holding it in when she's starting to think about it. There will probably be various stages of adjustment and thinking of ways to cover it or live with it or face it as she goes through the teenage years, if it doesn't grow back.

    But, I'll keep my fingers crossed that it does....
  6. susiestar

    susiestar Roll With It

    I am so very sorry. This is such a tough thing to face, and at age 11, when all you want is to look like all the other girls.

    Can they tattoo eyebrows onto her face? Would that make her feel less self-conscious? I know you can glue on eyelashes.

    I always hated barrettes, etc.. because I couldn't stand the sensation of having my hair always tugged. Some days it still feels like someone is pulling my hair all the time to have it in a barrette or ponytail.

    So, thinking that the headbands/bandannas may be too tight, or a material that feels "wrong" or strange to her, you might try making bandannas or headbands out of a WIDE variety of materials. Let her wander through the fabric store feeling the fabrics. If she finds one she thinks might feel good, buy 1/8 of a yard, or 1/16 of a yard. And then try one.

    If they feel OK in the am, and hten too tight or too loose in the pm, then put some buttons on them so she can adjust them to be tighter or looser (like the kids pants with the adjustable waists).

    You can also get hoodies that are comfy and buy several so she can wear them in the summer as shirts - just cut off the sleeves to whatever length. I know Jess has hoodies of a number of different weights of fabrics, some would be OK in the summer if they didn't have sleeves, some wouldn't.

    And when she is older she may change her mind about a wig.

    But she should remember this:

    God only made a few truly GREAT heads. He put hair on the rest of them.

    Gentle hugs to all of you.
  7. Woofens

    Woofens New Member

    How about skull caps or doo-rags? I have an adorable pink eeyore surgical cap. You can find them on ebay. Actually if she would wear the eeyore one, I'd send it to you. I wear doo-rags/ ball caps alot (probably more than 50% of my time out of the house) and there are some really cute "girly" ones available now.

    If you want the Eeyore one, even just to try, PM me, I'll send it to you for nothing. Its brand new, never been worn. Its really cute, just not for me :)

  8. TerryJ2

    TerryJ2 Well-Known Member

  9. Nancy423

    Nancy423 do I have to be the mom?

    yes, we did have some tests done a couple of years ago, but I'm not sure if they were geared toward autoimmune or other things...

    really,camron diaz?? oh, I thought you meant all the time LOL.. Yeah, we went thru pics of sigourney weaver and demi moore when they were bald.

    we have a ton of bandanas from the RN's at my office and we got a sold pink do rag from the Harley store a few months ago. We've got plenty of stuff for head covers, but thank you so much for the offer!! I did find a cute sweatshirt at Walmart last week that had really soft pink fuzzies inside the hood and she's crazy about it. Might take that idea and buy some with-o sleeves, or cut them for summer.....
    Last edited: Dec 13, 2008
  10. ML

    ML Guest

    Really nothing to add beyond what was already discussed except for my support. I developed a different kind of alopecia when I was a young adult, and have little hair at this point. Of course it's no comparison to what a child has to deal with but I do have a bit of understanding. I can't remember if the support groups for this condition were discussed but I know it always helps me to be a part of a greater group of folks that "get it". That's why I love this place so much. Hugs, ML
  11. crazymama30

    crazymama30 Active Member

    Hugs. My difficult child has Alopecia Arreata (sp). He has no eyebrow on one side, and half of one on the other and has bald spots on his head. This has been going on for about 9months. The bald spots on his head are getting better, but he looks weird without eyebrows. Hugs to your difficult child, it would be so hard to have no hair. I hope that it does get better in time.
  12. Jena

    Jena New Member

    i just wanted to jump in late, i'm sorry to say that i'm sorry and offer my support as well. I'm sorry that she has to deal with-this at such a young age. I like the other's ideas though.

  13. Steely

    Steely Active Member

    I also wanted to jump in late and offer hugs.

    It sounds like you are handling this all so well with her - she is lucky to have you. I am pretty sure I would be a basket case with this sort of thing - and yet you are really showing her the positives and helping to reshape her paradigm. Kudos.

    At the outdoor store I work at we have these things called "buffs" that are awesome. Like a stretchy bandana that can morph from head band, bandana, to hat. They come in all colors and designs, and we can't keep them on the shelf. I know you have lot's of options already I just thought I would add one more for future phases of her life.;)
  14. KTMom91

    KTMom91 Well-Known Member

    So sorry she's going through this. Sounds like she's handling it pretty well so far, being comfortable without covering her head, even in one class, seems to me to be a sign of her strength. Hopefully she'll continue to be strong and keep feeling pretty!
  15. Transparent

    Transparent New Member

    Poor thing. I hope it gets better with time. You have my T&P.
  16. SearchingForRainbows

    SearchingForRainbows Active Member

    I'm so sorry. My heart goes out to your daughter - 11 is an extremely tough age to be going through this. I don't have any suggestions or advice that the others haven't already given you. I just want you to know I'm thinking of you and your daughter and praying her hair will grow back. WFEN
  17. Fran

    Fran Former desparate mom

    I'm sorry she is hurting. I am so impressed she goes bald in her class. Good for her. Hair is over rated. LOL. Mine is cut pretty darn short by choice but I have to say that I think many women look good without hair.
    I know that this no comfort to a young woman who has no choice in the matter.
    I worked in Neurosurgery for years. At the time the majority of the patients were shaved because of their surgeries. I came to think of it as normal and didn't see bald. I really didn't. Again, these were adults and the alternative to having a shaved head was brain problems.

    I hope she is able to get some treatment to help her. You are both handling it much better than a lot of others might. It's not fair but life is like that isn't it?