Rett Syndrome month continued.

As part of Rett Syndrome Awareness month, the MD/DC/VA families are hosting a stroll-a-thon in Fairfax next weekend. Consider donating to Team Edda to fund research for treatments for Rett Syndrome. Click on the link to donate 🙂 Thank you!

Last week, we finally have gotten out of our little denial phase and have Google-diagnosed Edda as having seizures. I think she had 3 drop seizures last week (once on Tuesday at school and 2 on Saturday) where she actually fell to the ground (she did not get hurt). Now, she often wakes up in the middle of the night, unhappy, shaking and jerking. This has been building up since mid-summer, it’s the drop seizures that really convinced us that we can no longer really ignore this new development. We set up an appointment for a neurologist in a week or so to see what we should do. This is a setback, of course. We spent the weekend moping around the house and thinking that this was the start of rapidly deteriorating health for Edda and that her seizures were going to spiral out of control which probably is not true, but dammit, I like to indulge the pessimistic part of my personality. I also convinced myself that Edda was generally less responsive to me, my voice and her surroundings, so I did not hold out much hope for her first eye-gaze computer trial which was on Monday.


Eye-gaze computers have cameras and sensors installed along the computer screen to read Edda’s eye movements, so that her choices can be made by eye gaze. I have been working (slowly, but with great cheer and cooperation) with the school system to have Edda evaluated on these systems (there are a number of them out there). I don’t think the county’s ACC team have much experience with these sorts of devices, which is a little surprising to me. But anyways – on Monday, there were a whole party at Edda’s trial, both Edda’s 1st grade and kindergarten teachers, the OT, and 3 people from the central office. There were 4 video cameras trained on Edda. As I said, I was not optimistic, but Edda, as they say, exceeded expectations. She did not whine, did not fall asleep, did not act disinterested. She worked on the computer for well over an hour. She picked out pictures of Dora consistently from a field of 5, she consistently scanned over all her choices looking all over the screen, she did some simple, simple games. I don’t want to over sell Edda’s capabilities, it did seem haphazard a lot of the time and she favored the left side of the screen over the right side (same as her hands), but it was a nice start. She seemed pretty pleased with herself. So to balance out the crappiness of the onset of seizures, we have the really wonderful eye-gaze session in front of all the people who hopefully will fund the device and help Edda learn to use it.

4 thoughts on “Rett Syndrome month continued.”

  1. How wonderful to see Edda starts to use the machine, please keep trying, as long time ago, I through Natasha will never be able to use the Dynavox machine, now these days (after more than 1 year hard working), she use it in ST, doing homework, during dinner time…..and so on. we kids just need the time to learn it, no matter they can learn it or not, at least we give them chance to learn, that is most important, they get chance!
    you go girl

  2. Doris,
    I am so sorry you guys are starting to see seizures in Edda. Caitlyn has them too, but is more or less controled with meds. She has 1-2 a week. We will be thinking of you while you meet with the Neuro in your quest for answers!

    How cool about the eye gaze!! I know Caitlyn could do it, but we have had a heck of a time trying to get her calibrated! Maybe next time!

  3. The other day, Mom & I were so happy to pick up a Dora trash can from a Goodwill store. Now, it is on the floor of living room between our seats. There, on the wall, we have a Dora poster too. Edda must love them when she has chance to visit us next summer.

    We hope it will help to visit the neurogist for Edda's seizure.

    Much love, Mom & Dad

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