As a child Tom had seizures often. We change his seizure medications and for a short time the seizure would stop, but soon or later they would return and take on a new form. As a baby his seizures where like someone doing a jack=knife off a diving board; he's jerk up and fold in half. Then we went though a grand mal stage, just shaking all over and then sleep for hours. That was followed seizures where his hands would fly in the air and he would scream out. You get the picture we changed his medication about every 2 years, he had lots of seizures and different forms of them.
Fifteen years ago Felbatol was introduces and Tom has done so well on this drug, that when it was recalled off the market I begged to keep him on it. Yes!! Fifteen years had passed with far and few seizures....until lately.
Back in September I tried to explain this new eye movement thing that Tom was doing and that I thought were seizures to the doctor. The doctor said he didn't think they were but really needed to see one to be sure. I was fine with that at the time for I'd only see Tom do this twice. But since September they are showing up more frequently, lasting a little longer and with this one today you could feel him shake by just holding his arm or leg. My heart is broken.
4 comments:
I'm sending prayers for you :)
Me too. :) My heart and prayers are with you.
Kathy,
I am Amy's mom and have worked with developemental disabilities for 17 years. Do they have any speciality clinics in MI for seizures? We have one in MN that is really awesome. They do a number of assessments and then determine the types of seizures and medications(often more than one)to treat the seizures. I have found that GP's don't always understand the needs of people with disabilities.
I'm so, so sorry. It breaks my heart too, and I don't even know him. I never knew a mother's heart until I had a child...
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