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.

Wednesday, February 23, 2011

I should have known better than to assume that anything with Rett Syndrome would go the way that I expected.  We dropped Abby's Keppra a little to see if she could tolerate a lower dose.  She could not.  I figured that we would increase it to the original dose, and they would go back under control.  Seems reasonable, right?  Not so much.  She is having weird episodes several times a day and it has been a week on her original dose.  She stares into space for a moment and is non-responsive.  Then, her lips turn blue, she gets jittery and spastic, and then falls asleep for about an hour.  Weird.  I know that if I call the doctor, he will want to either have us admitted for a 24 hr EEG or increase her Keppra.  That was exactly the OPPOSITE thing that I wanted to happen when we tried to lower her meds.  Rett Syndrome is the exception to every rule and it's driving me crazy.  Its an unsolvable puzzle. The more I try to help, the worse things get.  How is that even possible? 


  1. so sorry ann marie. thinking of you both.

  2. I know exactly what you mean.

    I'm so sorry. I would love to come perform the 'obliviate' spell on you if it would only last for a vacation time. But, the thing is that we love our girls. I wouldn't trade my Eva for anything. Or anyone.

    I just want her better just like you.

    One RTT mama to another...


  3. I'm sorry. :( Maybe it's just taking a little longer for her body to adjust again to the original Keppra dose...at least that's what I am keeping my fingers crossed for! xoxo

  4. my new phrase is: its always something! fingers crossed that she will adjust. hugs.

  5. Stupid rett syndrome, I hope that it eases up on Abby soon and that you get just one small thing today that goes well and easy :-)

  6. I am sorry! I wish a fast adjustment for your beautiful Abby!