Wednesday, October 10, 2012

Dead Brain Cells

Girls with Rett Syndrome are able to understand everything you say and everything you do. They hear you when you say, "hi" and see you when you wave. They have a hard time responding back correctly. Let me explain why . . . 

Everyone has brain cells that die and get cleaned out by a protein in their brain and then they get new brain cells. Well, girls with Rett Syndrome are lacking that protein that cleans the brain of the dead brain cells. What happens is that the girls are born like any other child. They have all finger and toes and look perfect. They start developing normally. What we don't see is that as they are developing normally, their brain is accumulating the dead brain cells that aren't being cleaned out. All of the sudden the girls stop doing what they once could do. This is because of the dead brain cells. Their brain starts to get "foggy" with dead brain cells that their brain starts having a hard time sending signals to the rest of the body. So this is why over time, they stop doing things. Because the connection get's "foggy". So as time goes on, they start loosing the ability to do more and more because more brain cells are clogging the signal the brain is trying to send to the body. 
This is also why girls with rett syndrome have a high pain tolerance. Signals sent to the rest of the body are sent by your nerves. Because of the dead brain cells, the nerves aren't firing off like yours and mine and the nerves are what tell us we are in pain.

Our girls with Rett Syndrome do not have mental retardation (although it may seem like that just by looking at them and how they look like they aren't paying attention). Their brain is all there and they do understand you and know what is going on. That is why I ask that people treat my daughter like any other 2 year old. Hold her hand (she may pull away but it's not because she doesn't want to hold your hand, she can't control her body). Talk to her (she may not make eye contact all the time, but that's because she can't always control her eyes). Play with her. Sing to her. You'll eventually notice that she reacts to you and what you are doing the best she can. You will come to realize just how much she understands you.
Just be patient with her (and other girls with Rett Syndrome). If you give them enough time to respond, her brain just may be able to send a signal every once and a while. She can do great things if you just give her a little time. 

I know this isn't a medical explanation  This is just my way of explaining it, the way I understand it. Hopefully this makes sense and if anyone has any questions, please ask!


Layne012 said...

Whitney that was probably one of the best explanations i have read! Thank you for posting that! The whole brain cells not getting cleaned out and foggyness really helped my understand a little more! Thanks!

Katy said...

I love that you explained this!

SwingMamma said...

I've been following your blog on occasion since I found it via pinterest. I've had the privilege of caring for a young lady with RS for the past 10 yrs. (I'm a home health nurse) The very first time we met it was like magic. The connection and bond we had was instantaneous.

I can truly say that my "sister" and her family has taught me more about life then I could have ever thought. Two and a half years ago I became a mom myself and I know it was the years of caring for that gorgeous young lady that have prepared me for motherhood. She's taught me how to live in the now and appreciate every moment even when things get rough.

I just wanted to let you know that this post is a great way of explaining RS and that you are doing an awesome job as a mom. Not just to Oaklynn but to both your girls. You seem to be giving your girls what ALL kids need most, YOU!
"Life isn't a matter of milestones but of moments"
-Rose F. Kennedy

Jenn said...

I loved the way you made it understandable to everyone. Our girls DO love all the love and attention, silly songs, and affection we can give them.