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.

Tuesday, June 22, 2010

We finally got a little information about Abby's falling spells yesterday. I emailed a video clip of an episode to Jane Lane a while back, and she and Dr. Percy got back with us last night. Dr. Percy and Jane Lane run the Rett Clinic at UAB that Abby visits twice a year. They are both experts in all things Rett. It's amazing how well they both "get" our girls(and boys).

After watching the clip, they agree that the spells are not seizures. They are a conscious loss of tone, and are common with Rett. Sigh. Have I said that I hate Rett Syndrome yet today? Probably so, but not in writing. Anyway, Sometimes theses spells are referred to as melting spells. Unfortunately, we still don't know how long they will last, but we're relieved that we can rule out seizures and other medical problems that would cause her to fall. All we can do is work with her therapists to help her regain the strength and balance, and hope the drops are just a phase.

It's hard to just write something off as a "rett thing". Maybe it's still a little denial, but Im always trying to make it something else, something fixable. All these little "rett things" make her diagnosis that much more real. Now that we have some answers though, maybe I can stop obsessing about her walking and her lack thereof....maybe.


  1. I needed this post today! Leah does the same thing. I just felt like they weren't seizures, though. She is fine throughout them and fine just after, she just falls out of nowhere! Just drops. So, the conscious loss of tone makes more sense than a seizure to me. And just to make you feel better...I hate Rett Syndrome too. I say it way more than once a day.

    We need to meet you and Abby. She is the cutest little thing!

  2. Ahh, Ann Marie. I am sorry it was not the answer you were looking for. You and Wes have handled this with so much grace and you are such wonderful parents to Abby. I can only imagine how hard this is for you.

  3. Avery has been doing this too. But it happens so fast that I cant be sure she isnt tripping over her feet which happens all the time too. Ill have to pay better attention. i too hate chalking things up to Rett. I want there to be a fixable thing in there too. oh and if you didnt know, i HATE rett syndrome too.

  4. Hugs to youand Abby...Yep I will repeat it too - I HATE RETT SYNDROME! Abby does not deserve this crap - none of our girls do. THinking about you and praying for you!!