So since we lowered the meds, and tried to start new ones...... we have had SOOOOOOOO many seizures. I can't even begin to explain, but I have a pretty good reccord of them with the neurologist. But they are coming ever few weeks, this last bout, only one week apart. They come on like electrical storms...... it usually starts with him being wakeful the night before, and then the next day or night, he starts having seizures. Today is Wednesday, and he had 3 or 4 siezures yesterday, 2 bigger ones, and a few smaller ones. A week before on Tuesday he had about 4 too. He is on 5 25mg tabs of lamictal still, and 1mg of clonazapine at night, and then we give him ativan if he starts to sieze. I don't have the energy to talk much more about it, I'm quite emotionally exhausted, full of anxiety and stress. But I don't feel like reporting it to the neurologist every time he has seizures, because all she does is tell me to give him more meds...... more bandaid, and not looking into WHAT THE HELL IS GOING ON!!!
So I figured I better start recording them here on this site. I will try to write more detail later. Expecting a quiet night, it usually only goes on for 24 hours and then stops..... although the distance between is getting shorter and shorter.
Love,
Willow
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