Thursday, April 22, 2010

Still Struggling

Despite our best efforts, Soren has been having a rough time this past month with his seizures. We thought we were seeing some progress. We brought back Lamictal and started hearing him laugh again.

But they laughs are gone again. At least for us. I hear that he laughs at school. Hmmmm.

And his seizures, though brief Tonics, are WHOMPERS! I wouldn't be laughing if these things hit me either! They actually elicit a vocal "HUH!" out of him they hit so hard. It's like he got socked in the gut. Which I actually think it might feel like because his stomach muscles contract and his arms and legs stick straight out.

He also seems to know they are coming sometimes. Sometimes he's fussy. Sometimes he "talks" more. There's clearly more awareness. I just wish I knew what he was experiencing.

There are dogs that can sense seizures coming on in people. I wish I had that sense! Or that Aaron and Mo weren't allergic to dogs. Or that I didn't have enough on my hands without adding a dog to the mix. Or that they gave those dogs to people as disabled as Soren. Unfortunately, none of those wishes are going to come true. So we just have to be there for Soren when the seizures hit.

Clearly we need to work on the meds some more. Hopefully we can decrease these seizures. Hopefully we can get that laugh back.

Amy

2 comments:

am_santoyo said...

I wish with all my heart you had Soren's seizures controlled. I check your blog now and then...we actually met at the Pasadena support group...our daughter is Bella. We are with a new Dr. that I would highly recommend.
Please know I will keep your family in my prayers.

Ana

林純娟 said...

IS VERY GOOD..............................