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.

Monday, January 18, 2010

We have known since Abby's diagnosis that the likelihood of seizures was extremely high, especially as she got older. I have been thinking about the possibility a lot lately because the onset is often around 4 years old or older. Even so, it took me by surprise when my little girl started seizing on Friday. At first, I thought it might have just been a tremor. I read a little about them in my Rett Handbook before the next one hit about an hour later. By that time, there was no doubt what it was. Abby had 5 seizures by the time we got to Kosair Children's Hospital, and another 3 while we were there on Friday. The next 24 hours were without seizures, thanks to the high dose of medicine that she was given when she was admitted. Though there were no seizures, the was also very little sleep and definitely no smiles. One side affect of the medicine was agitation, and Abby was feeling it pretty bad. When it wore off on Saturday evening she was much happier, but began seizing several times a day, and continues to do so. She seized about 5 times last night, and once during a nap today. Her medicine is either not all in her system yet, needs to be changed, or she needs more of it. It was raised this morning and I suspect when we talk to the doctor tomorrow, it will be raised again. This has been a very scary weekend for all of us. Thanks for the messages and prayers. We definitely appreciate it. Abby is blessed with so many people who love her. I don't know how we would get through all this craziness without you. We aren't sure why this is happening to Abby, but it's a relief knowing that God is in control. Despite the seizures, Abby has been in a great mood this evening. Hopefully she will have a restful night!

Abby had an EEG while at the hospital. Thankfully, she was asleep (because they needed her to be still for 20-30 minutes). If you know Abby, you know how difficult that can be. People with Rett typically have abnormal EEG's. Abby is no exception. It showed a lot of spikes coming from different areas of the brain. Her neuro said it is likely that these were not her first seizures, and that she probably has been having them while sleeping. He also said she will most likely have to be on anti-seizure meds indefinitely. Not the best news ever, but at least the seizures are usually manageable with the meds.

Abby was happy when we brought some of her favorite toys to the hospital.


  1. ann marie
    im so sorry you have to go thru this. Im so worried that we too will have this in our future. I have had such a sad night tonight-Avery had a crying spell while I was getting her in her jammies and she was so upset and mad and biting her arm and I just lost it. then I think that things just might get worse. then I see posts about young girls passing away and its sometimes just too much. It just isnt fair for our babies. Im thinking about you guys and hope that you can find the right med/combo of meds that helps take the seizures away. what kind is she having?
    big hugs

  2. Still thinking of you and praying for you. Sending lots of love to you, Wes and Abby.

  3. Her smiles are the best......


  4. Please know you have alot of friends and family praying for ya'll. Abby is such a beautiful girl inside and out,and her and Logan together are wonderful. =0)
    Although we dont see each other often we are there in spirit with you.
    Love ya'll,
    Stacy & Kent