We upped Matthew's phenybarbitol this past monday. He has had a siezure lasting 4-5 seconds every hour or hour and a half. At night he has them about every two hours. I notice his heart races afterwards. Sometimes the beats seem irregular. I asked the ped. about it and she said as long as it returns to normal after a few minutes he would be okay.
I'm probably going to see If I can bring him in at least for one day to have them watch him at the hospital. I'm calling tomorrow.
How much can his heart take and do seizures like this affect the heart? I would think they would. I was okay with the seizures and willing to wait until the upped dosage kicked in but now I can't even sleep worrying that he will have cardiac arrest during his sleep.
We were told we would have to live with seizures and I am but I want to make sure that I am doing the right thing. WE are trying not to "knock him out" with seizure meds but If they are affecting his heart, I am willing to go up on the phenylbarb or try something else.
HE actually went two whole days without seizures a few weeks ago. Thought we were on to something, now, no matter what I do they keep on coming.
(THese are tonic siezures, lasting 4-5 seconds. He hasn't been sleepy or groggy afterwards until the last few days. THey are wearing him down now and us too) THe don't "look" near as what he used to have and he even completely stopped having myoclonic jerks in the mornings, and he is the happiest and most content I've seen him in two years as far as lying down and playing and smiling and just being a little angel. So I don't want to ruin that either by adding or upping a seizure med.)
I try to live with them and I was doing good, now I worry about his heart.
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