Wednesday, January 12, 2011


Knowing the nature of Rett syndrome, in all its randomness, I always hesitate to say that things are going well.  I am not superstitious, but I realize any relief from difficult symptoms is often temporary.  We Rett parents are always waiting for another shoe to drop.

After almost two years of dealing with regular crying episodes, Abby is putting them behind her, at least for now.  At the worst of it, we were giving her Gravol almost daily to allow her some relief.  Since November, and her strange, temporary inability to stand up or walk, she has not needed to take Gravol at all.  The crying episodes continued, but the severity decreased.  Now, in January, they seem to be a thing of the past.  Let's hope it lasts!

Some may wonder what caused this positive change and we can only guess.  Here are my top 4 guesses:

1. Random Rettness (there is no known explanation)
2. Leveling off of hormones or nervous system changes which accompany adolescence
3. Landing on the optimum dose and type of medication (risperidone, in this case)

We started using arm braces regularly with Abby in December.  They are used to restrict her arm movement at the elbow.  The idea is to prevent her from hitting her head or biting her hand during her worst episodes of distress.  But the real benefit is the calming influence they have on her.  Her neurologist explained that they interrupt the negative feedback loop in her nervous system when she starts to become distressed.  They prevent her from becoming more distressed.  They have been so useful that she actually looks relieved when we pull them out to put them on her.

Some people have been asking how Abby's doing with walking now days.  After the problems in November, she was completely back to her usual mobility.  A few days ago, she seemed to resist walking in much the same way.  It is scary to watch, but I pushed her to walk, and she bounced right back on the same day.  I have heard from a few other parents that their girls have temporary periods of not walking and then all mobility returns.

Some of you have also been asking about the Rett research news from the last few months.  My next post will attempt to explain some of that.  It is complicated, but there is some promising progress!  Stay tuned.

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