Grace for Rett » Grace's Life with Rett Syndrome

Sandifer Syndrome?

Note: In the end, Grace didn’t have Sandifer. I believe these were the start of her seizures.

Grace has been behaving really strangely lately and I have assumed that this is due to anxiety. In my research, I’ve read the studies on Rett mice and their increased anxiety and stress response levels and took that to mean that this must be the explanation for Grace’s sudden strange changes which include instant stiffness, so rigid that we can’t bend her arms and she twists and contorts in unnatural ways that make her very uncomfortable. As you can see in the photo to the right, she rolls her eyes back. Also with this is very strange head movements and a look as if Grace has disappeared for a moment. These last from 1-3 minutes and every single description from this I read on Wikipedia describes what Grace is experiencing.

So the other day, I spoke to her beloved Dr. L (we LOVE this lady!) and she mentioned Sandifer Syndrome. I was frustrated and thinking “you’re not listening to me!” when I said I thought it was anxiety, but the more I look into it, the more sense it makes that this is exactly what Grace is going through.

Sandifer only happens in 1% of reflux cases and usually subsides by the age of three except in cases of severe mental disability, in which case it can extend to adolescence. We’ve increased her reflux meds and she’s starting the muscle  relaxer Baclofen to ease the spasms. Balcofen is a really interesting medication used to treat things like alcohol dependence, Lou Gehrig’s disease and Multiple Sclerosis. I just hate seeing this take her body over and causing her pain. As if she hasn’t had enough stolen from her by Rett 🙁

Wanda Kolo - November 1, 2011 - 3:50 pm

I love you Grace!

Melanie Kennelly - November 3, 2011 - 9:29 am

Mikayla went through the same thing at around the age of 3. Most of it was related to seizure activity. From the age of 2 to about 3 and half she suffered from severe anxiety and used to scream 6 out of 7 days in the week!! It was a very stressful time for all of us, we then put her on a drug called Frisium which not only helped control all the little seizures she was having ( 40 to 50 a day) but also the anxiety. By 4 she was a much more relaxed and happy little girl.

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