Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Thursday, June 17, 2010

Today, I took Abby to her doctor.....again.  It's almost embarrassing how often we are there with weird issues. They're really only weird to anyone without a child with Rett.  For those of you who have been to these such appointments, you know the feeling.  There was the "she will swallow food, but not saliva" and the  "she has been scatching her diaper area for a year, but there's no rash".  There really are not any easy fixes to these problems, once the typical remedies don't work.  Today was another walking issue.  I even brought props with me to the appointment.  I used the calendar to show a timeline of when the craziness started happening and showed a video clip on my Ipad of Abby having a drop spell.  Since I have no idea what is going on with her, I have to explain every relevant piece of information that I can think of.  I think if I give him enough information, he will find a problem, and we can fix it.  Today, my explanation went something like this:

She started "dropping" a week after her immunizations.
She had knots in her legs after the shots. Any relation?
She only does it when she is bearing weight on her legs. 
It usually happens when she has been sitting or laying for a long time.
Since she started having "drops", she has been very unsteady and walks only with assistance.
The neuro thinks they are drop seizures and increased her medicine, making her even more unsteady. 
She maintains eye contact and smiles while she drops.
She drops 3-4 times a day, for the past month.

This is the point where her doctor checks her reflexes in her legs, asks me a few questions, and gets Abby to walk around the hallway.  His take on the situation:

She is not having atonic seizures, and can return to her normal dose of Keppra.
She is not having a complication from the immunizations because she is having normal reflexes in her legs.
The problem is that she has Rett Syndrome, and abnormal motor function can happen.
He sugguests some therapies to help loosen her leg muscles, and recommends seeing her orthpaedist again to evaluate her gait.

What do you do with this information?

Tomorrow, I will make an appointment with the orthopaedist.

Tonight, I will pray for a cure for Rett Syndrome, and rejoice in the fact that the broken body that Abby is trapped in now won't be the one that she spends eternity in.         


  1. that knowledge of eternity is the only thing that gets me through the day sometimes. :) here's hoping the orthopedist has some answers in the meantime.

  2. Wow...I so get this. My momma heart hurts with yours. Rejoicing in eternity with you...

  3. I'm rejoicing in eternity with you for Abby, as well. That brought tears to my eyes. I am sorry it is so hard to figure out what is going on. I also hope that the orthopedist has some answers for you, and that the therapies help.

    Lots of love to you and Abby.

  4. Thanks so much, ladies.

    We also have an appointment at the Birmingham Rett Clinic in August, so we will get some information there as well. Feeling much better today. Without the large dose of Keppra last night, Abby seems to be less unsteady today, even wanting to walk on her own. She is all smiles, which makes all the difference.