Wednesday, January 5, 2011

Rett Syndrome SUCKS!

And so does everything that comes with it.

I have been talking to other Rettmoms the last few days because if nothing else,all we have is each other. They are the only ones who get it.

It seems like every single time things start to look up Rett Syndrome rears it's ugly head and presents itself again. With force. If it was a physical thing I could grab a hold of I would so kick it's ass from here to the year 3000.

I know most people who know our situation know that Rett robbed us of all our hopes and dreams for our daughter. It took away her speech, her ability to move on her own and a slew of other things. I am going to borrow from another Mom to give you a little idea of what Abby deals with and some of what Rett Syndrome has given her. It is so much more than just the loss of speech and motor function. Because of Rett Syndrome Abby now deals with:

Apraxia
Hypotonia
Aerophagia
Apnea
Hypopnea
screaming fits and panic attacks
inconsolable crying
non verbal
coordination problems
infant like walk and gait with interrupted periods of backward walking
Wears Afo's or braces on her feet
difficulty swallowing
needs feeding tube for hydration and nutrition
microcephaly (small head)
teeth grinding
tremors
spastic hand movements
poor sleep,sleep disturbances,night terrors
GI issues (poor weight gain, constipation, reflux, etc.)
Scoliosis

That's alot of stuff for a little girl.

So here's my latest rant.....

Abby has scoliosis. Sucks I know. When we first discovered it she was at a 15 degree s curve affecting lumbars 1-4. We got a high as 20 degrees but after many therapies went down to 17 degrees. In April we went to the Ortho and got the,"Well you know Scoliosis comes with Rett Syndrome speech. FREAKEN hate hate that one. What I hear is,' tough shit sucks for you' whenever anyone says that. The doc then told us that if it got above 25% he would do what is called Vertebral Body Stapling. He explained that they would basically go in and put 2 staples next to the curve which would force her spine to grow straight as she grows.

On Monday we went back in for our 9 month check up. I sat there in the waiting room then in the clinic room for an hour each before they came in and had us go do x-rays. We did them and I was just so sure he was gonna tell me that she was down to 15 degrees or maybe even less. He came in and said she was at 34 Degrees. 34? What? Room was spinning. Tears flowing...Rett Speech babbling...

He started talking rods. I asked about the stapling. He looked at me like I was crazy and said he doesn't do that on children this young and that it is experimental. He sat there showing me xrays. Im not an expert but I just dont think they are accurate. She is obviously sitting on her right buttcheek, her head is moving and her hips look way out of whack. How can they look at that and compare it to the last one?

Oh man I felt like I was gonna throw up. He kept talking rods. I asked him if she would be able to bend and walk and play and he said there was no guarantee. I am just sick. They have to be wrong right?

So I get home and find the last xrays and sitting right there signed by this doctor is a release form telling me to look up and research the body stapling for over 25 percent signed in April!

So here's the x-rays. Am I crazy?

April 10


Jan 11

3 comments:

Damien Mearns said...

Have a look at Theraflex.
- do some You Tube searches so see what it looks like.
I've got a Facebook site "Scoliosis Cures and Pain Relief" with some awsome before and after pics of people wiht Scoliosis who are having this Therapy

Rebecca said...

Looks pretty positional to me! Caitlyn leans on one cheek and looks crooked too..

I hate that "it's just part of Rett Syndrome" speech. We got that in the ER when Caitlyn had her first seizure..then the nurse at school the following year had the nerve to say "it's not a matter of if the seizures get worse, it's when. They always get worse in Rett Syndrome." The same nurse who said to us at our transition meeting "I've seen kids with Rett. Are you sure that's what they said she has?"

Rett Syndrome Sucks, and medical personel are often times not the brightest!

I'm Just a Girl said...

I am so sorry you all have to go through this. I think you're right. The latest x-ray looks bad (she is not sitting straight.) I would demand that they retake the x-ray. I personally don't know how hard this is for you but I've seen my parents go through many of the same struggles with my older brother. You all are constantly in our prayers. God Bless!