Monday, April 6, 2009

More thoughts about alopecia

Thanks for all the kind comments about Ava! I never imagined I would be shaving my child's hair off but it got to the point that what little hair she had left (basically 3 strands of it) was so matted and tangled that it just seemed to me the best thing to do. My sister came over to offer me emotional support and video taped the whole thing, my tears and all! I will say it was one of the hardest things I have ever done! I'll be honest, I'm struggling with the whole thing. When I took her out in public over the weekend several times, she got so many stares! I feel like I'm already in a battle to get people to accept the Down Syndrome, and now no hair too? In addition to the stares she came home from the soccer games on Saturday with a pretty bad sunburn on top of her head. I thought she was under the canopy of the stroller but she kept leaning forward into the sun. :( Time to start carrying sunscreen in my purse!

I've had several people ask about alopecia, what it is exactly and how it affects the hair. From what I understand it is an autoimmune disorder where the immune system attacks the hair follicles, similar to what chemotherapy does in cancer patients. From what I read it is mostly triggered by stress, again, something that is very difficult for me to hear. I would like to think her transition here has been easy and smooth, but I suppose she has spent the last year basically in a new culture with a new language, new food, and basically strangers that want to hold her all the time. I suppose that would be enough stress to lose your hair. I pray that the hair will start growing back once she has transitioned completely. On the upside, the girl is NEVER sick! I suppose the two have something to do with each other.

Interestingly I met a lady at church on Sunday whose daughter is affected by alopecia. The daughter is 12 years old and, according to her mother, is not bothered a bit by it. She has been completely bald 4 times yet refuses to wear the many hats and wigs her mother has purchased for her over the years. :)

Speaking of hats, it doesn't look like Ava will be one to leave them on either. She thought it was really funny at Big Lots the other night to take her hat off and throw it as far as she could to see Mom chasing after it again and again. On the other hand, she is quite preoccupied with her new bald head and enjoys stroking it all the time.

So, getting to my point in writing this blog post. Even though I am struggling with how people will accept her, the guilt of wondering what stress I have put her through to cause all her hair to fall out, the sunburned head, and questions about the future, whether it will ever grow back, am I doing enough for her, etc....I received a special gift Friday afternoon when Ava got off the school bus, in her backpack, that I want to share with you. It was as if God was saying, So she lost her hair, so what? Look what she is gaining.
(In case you can't read it the note says.....Ava walked from the classroom to the office with her walker. Ava is doing very well with her walker.)
By the way, we have an appointment with another dermatologist on Friday. Please pray this next doctor will give us a better prognosis and hopefully more options.


Ssejors said...

Right on! That's great. Through all that she is gaining confidence and skills. Maybe her hair is just falling out because she needs to focus all her energy on developing. Then when she's more settled and comfortable and confident.. maybe it will grow back! :) Great Job Ava

Tim Rovenstine said...

I am anxious to see her WALK without the walker for her Nanny's 94th birthday, May 19th.

Leah said...
This comment has been removed by the author.
Leah said...

I don't think it was stress. Kids with DS have a really high incidence of Alopecia. I know two adult women with DS who are completely bald, and no, it doesn't seem to bother them. But you have to remember, the autoimmune process had already started long before you brought her home. If there was "stress" causing it, I would think living in an orphanage was enough, then being uprooted and flown 1/2 way across the world to a whole new life could do it, don't you? Just like Autoimmune processes are slow to start, they don't just go away either. YOU did nothing to cause her hair to fall out. This is just part of Ava, the child you love and adore. Just like she has beautiful eyes and smile, she also has alopecia. (by the way, the deleted comment was because there was a spelling error that totally changed a sentence. LOL )

Jill said...

How wonderful that both Ava & Keith are beginning to walk! We're in the process of ordering Keith's kay walker and braces! Soon they'll both be walking!!!

jennifer... said...

I wanted to second what Leah wrote.  I've known two different women with alopecea who were not "stressed".  They were actually pretty cool with it, in fact.  Don't blame yourself!  Ave is happy and thriving!

June Berger said...

I want to third that, alopecia is NOT always d/t stress. Ava has come so far and appears so happy, I find it difficult to believe it is due to stress. I guess maybe I should buy stock in sunscreen? Between her and me (I'm allergic to the sun) stocks should shoot up, at least til her hair grows in again. How proud you must be of her walking! It's so exciting, each milestone that our little darlings make!

Amy said...

I don't think that you have done anything to cause her stress!! I know that is just your mommy-guilt creeping out... You have given her so many blessings and opportunities that you know that she would not have had you not brought her home. Not that long ago - she was stuck in a place with NO opportunity, no love and no family... she would have been transferred off to a horrible place to lay in a bed all day long with nothing. So what if her hair falls out! :) Don't worry about the staring... sometimes, even the best of us stare at things for bizarre reasons! Just remind yourself that they are probably just staring out of jealousy of you having such a beautiful family!

Big hugs!! :)