Friday, January 30, 2009

Alopecia

I'd like to start this post by clarifying that No.....One of my kids did NOT shave Ava's eyebrows off but that would have made one really interesting blog post. :) They have all cut each other's hair at one point or another but thank the Lord they have never taken a razor to each other!

It wasn't until I was reminiscing about our adoption last year, and looking at photographs from our Ukraine trip and of our first visits with Ava, that I realized, she used to have such pretty eyebrows and eyelashes! I'm sure they've been falling out for some time and I haven't even noticed. (I'm not the most observant person.)

So some of you noticed, and some of you had to cheat by reading comments, but yes, apparently the alopecia is affecting her eyebrows and eyelashes too. I took her back to the dermatologist yesterday and didn't get great news.

Alopecia is very very difficult to treat. The younger it sets in the more difficult it is to treat. There are several treatment options but none are extremely effective. We experimented twice on some of the bald patches with steroid creams and injections (which were surprisingly not painful as I thought they would be, Ava didn't cry either time). Interestingly, over the past several months some areas grew in, some areas did not, and even more strange.....the one area that was NOT treated, the bald spot on the back of her head, grew in the best of all. ????? There is another treatment called squaric acid, I think, but the dr. said it can be cause a lot of irritation and sometimes blistering to the scalp, and neither of us felt like we wanted to subject her to that.

So, yes I am sad and yes I am disappointed that she has alopecia, and while part of me wants to give her every chance possible to have a head-full of hair, the other part of me doesn't want to put either one of us through that fight.

We had a family discussion last night and we all agree, Ava is perfect with or without hair, with or without eyelashes, and with or without eyebrows. We will pray they grow back, but we'll take her just like she is and love her the same.

So there you have it. The case of the missing eyebrows. Solved.

On a more positive note, however, she also had a follow-up with the opthamologist yesterday and her eyes are perfectly aligned and functioning very well!!! So yes, I guess her cross-eyed-ness is also missing, and that is truly something to be happy about!

10 comments:

AZmomto8 said...

Meghan gets Squaric acid treatments every 3 weeks, other than the first application, she did not get a skin reaction. It hleped her get eyebrows and eyelashes back again, and yes, even untreated areas have regrown, it will not cure her, but it helps her to feel better about herself, she is proud of her hair. Because she lacks body hair they feel she may lose all her hair someday, it makes me sad for her, as if Down syndrome were not enough, but I am thankful that is all we have to worry about with her, and thank God daily for that.

Bethany said...

Aww she is so lucky to have you guys for a family! I'm so sorry her eyebrows have gone missing in action. I'll be praying they find their home again soon! Isn't that how alopecia often works? It comes and goes, comes and goes?

christina L said...

Well, I am sad that she has lost hair, but she remains one beautiful little girl. On the bright side, she may never have to shave her legs when she gets older. That would surely be a blessing.

Elisabeth- Truly Blessed said...

She is such a beautiful girl and blessed to be a part of your family. We too are a homeschooling family praying for God's direction for our family. I began following your journey a while back through RR.
In Him,
E

RoverHaus said...

Hair is way overrated!!!

You are right, she is a very beautiful girl, with or without haird. I applaud your decision to just enjoy her as is without having to fix the little cosmetic things.

We're thrilled that her eyes are functioning! Thanks God!

AZmomto8 said...

I makes me feel rather bad that anyone would presume we would hurt our daughter just for the sake of her hair, but I have have to ask, have any of you ever gone bald? I have, and when you are missing eyebrows and eyelashes, everything gets in to your eyes and you are always tearing, it is painful.

My daughter is so proud of her new eyebrows and eye lashes, she shows them to everyone, she looks in the mirror at them and smiles.

Squaric acid dooes not cause blistering, Meghan barely gets red from it, I would not put her through that. She loves having hair, and I want to help her keep it as long as I can.

Christina said...

CHarissa, you know that Kallie also suffers from Alopeica and it is SO annoying. We used to do topical steriods but they didn't work. Injections, well, whatever...Right now we are going through another attack of her hair falling out and are considering goin to another derm for another opinion. Sigh....I feel for ya gf.

mom2four said...

awww, now see how much I notice! I didn't even notice the hair......i just kept thinking why is she sad that her eyes are staying uncrossed?? Maybe thinking you were sad she was "growing up" gheeesh, I need to pay ALOT closer attention!

Qadoshyah said...

I have heard the same thing about alopecia . . . the hair will come & go. But, either way she is still beautiful :)!

Alopecia can be a sign of Celiac Disease too, just thought I'd mention that as an FYI ;).

High doses of Biotin & Inositol (both supplements) also help with hair re-growth.

Qadoshyah

Debbie said...

I am sorry to hear that Ava has alopecia, and at such a young age! I know you'll love her with or without hair. :-) Take a look at the site WellTellMe.com and do a search for alopecia. There'a a lot of good information there that might help Ava. God bless!