It must be a mother's intuition. On our Infantile Spasms support group, we have a saying that 'if mom thinks something is wrong, it must be". It doesn't matter that the neuro thinks you are crazy, just trust your instincts.
I created panic on Monday when I left the message for Austin's OT that he wasn't ready for school. Then I went into the fact that he seemed off and that I thought an EEG was necessary. So I trudge on, work hard and get the EEG scheduled for Monday.
Well, it's a damn good thing I did. I just got a call from Jeff to tell me he was on his way home with the kids. He said as he was buckling Austin into his carseat he was almost positive that he had a seizure. This is how it happened the last time too. We had weaned Austin from the Vigabatrin in April 05. He had had a normal EEG one month prior. Within a week or so of coming off the Vigabatrin, I told Jeff something was wrong and that Austin was off. I don't know how else to describe it. Sure enough, an EEG showed he was having activity again. There were no clinical seizures at the time so the neuro urged us to leave his meds as they were and watch him. It took 6 months, but the seizures reappeared. We put him back on the Vigabatrin and he has been seizure free for 14 months. In that time we have never increased his meds and he has gained about 10 lbs. I think he is outgrowing he dose he's been on and I think there is more activity on the EEG. Of course we'll have to wait until Monday...well actually later in the week, when the report is released to know for sure.
At least I was on the ball this time and hopefully, we can increase meds and get him back under control. Thank God that Vigabatrin has always worked until now. I just need to hope it'll work again.