Thursday, March 18, 2010

Hair today, gone tomorrow.

Something you don't often hear about in connection with Down syndrome - alopecia.

The Love Magnet is losing her hair again. When she was 3, she looked like a little Japanese warrior with a top knot and not much else. The children's hospital had us start applying Men's Rogaine (the women's formula isn't strong enough, we were told.) They also showed us the research on alopecia. 1/3 of the population will have their hair grow back with no help, 1/3 will have it grow back with the help of treatments like Rogaine, and 1/3 will never have it grow back. Doctors do not know what causes it. Just tag it as one of the many side effects of having Down Syndrome.

The Love Magnet's hair grew back after many long agonizing months.

I can remember thinking "Good grief. She has Down Syndrome. Does she have to have another whammy on top of that?" (No, I was not saying this to God. Just to myself. Just a little pity-party. I don't think I would have thought much of it if she had been a boy. But girls.......well, you understand, right?)

A few months ago I started noticing that it is happening again. My daughter is losing her hair at the hairline. Rather odd, as alopecia usually starts with dime sized spots on different parts of the head. TLM's hairline just recedes. It makes it hard to use hair-pretties like barrettes. I wish I could keep hairbands on her head, but it is so odd shaped, and the ears are set so low, that I've never found headbands that stay on her head.

So I bought another supply of Men's Rogaine. She faithfully reminds me she needs her hair meds just like she remembers every morning to take her "neck" meds (for her thyroid, actually). I try to curl her hair, or do girly things with it. Can't braid it or pull it back - it makes the hair loss too obvious. It's bad enough on one side now that bangs don't hide at all.

At least she is healthy. Maybe I should try hats? I wonder if she would keep hats on for more than a few minutes.

3 comments:

Al, Wendy, Max, and Lil said...

Aww, so sad for my little niece. You are right that hair loss for a boy is much less noticeable. One thing I've heard is that hat wearing can accelerate hair loss. I don't know if it is true but I've heard it more than once. Her cute face and personality make up for any hair, though!

Jennece said...

At that cute toy store by Winco Off of Main ST. by the freeway they have these cute knitted hats that would fit her that you could put a cute clip flower attached to it. She would look darling in those! I just think she's adorable!

Anna said...

so frustrating! Well when the weather is cool she could wear one of these: http://tmatthewsfineart.blogspot.com/2010/01/free-knitting-pattern-headband-ear.html

I think they are way cute.