Sunday, August 03, 2008

Long day

Today was an early one. 3:15 AM and I heard whistles through the intercom. I know Alex is getting restless or about to have a seizure. I lay awake for the next 40 minutes, waiting. Then I hear shuffling footsteps. Alex is up, 4:10 AM. Hmm, seems very early.

But I have some work to do so Alex and I are out to the living room. He quickly becomes engrossed in his Lego puzzle. But after 30 minutes he is by my side pointing to the kitchen.

I try and get him to eat cereal but he refuses and points to the macaroni and cheese. Really? Mac and cheese this early? Yep, He eats a plate of Mac. And a little water.

Now 7:30 Am and Alex is loosing steam. He pulls everything off the bed and makes a ‘nest‘ for himself on the floor. But meds are at 8 AM. So a quick consult with Mom and we keep him up long enough to have meds.

Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.

Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.

Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.

After lunch we tried to go watch the planes and trains but his drooling was just too much. He only lasted 45 minutes. When we got home he took a nap. But 4 PM he is back signing for me to take him to the planes. Off we go.

Not too many planes but one train. He signs ‘M’ for Mac Donald’s but I ask if he would rather get sausage from Blue Cactus CafĂ©. He shakes his head yes but then refuses to eat any. Oh well, into the frig for lunch tomorrow.

Now he is helping Mom vacuum and is bringing things to me at the desk. Hope he stays up for a while so he will sleep in.

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