Weaning

For the past 5 weeks, we have been weaning my son off his seizure medication. When he was 2 and 8 months he had his first seizures. This past June was a 2-year marker. We had not observed any seizure activity for 2 years! Woohoo!

We had been waiting for this. Joel had his bi-annual appointment with his neurologist in May. At that appointment we talked about our plan to wean Joel from his medication – IF his EEG was normal. Drum roll please…… normal! We waited until after a long road trip to begin the weaning process. Changes in sleep, lack of sleep, heat and time changes are all seizure triggers – and our trip had all of those elements. So, the day after we returned, we began the 6-week process.

There are a lot of fears I have in this process. At our meeting in July I learned Joel has a 1 in 5 chance of this condition recurring – that\’s 20%. The risk goes up at puberty. The fear I face, and the fear that is growing (he is now down to 1/6th of his normal dose) is that it will happen again. I fear it will happen when he is climbing on a play structure. I fear one might happen while I am not around. I don\’t want him to have a potty \”accident\” and be embarrassed. A seizure for him could be a full-blown grand mal, or a split-second lapse of muscle control. As the full weaning comes closer, my fear increases. My hope and faith waver.

The first 6 months are critical. 80% of people who go off their meds and have their seizures recur – do so in the first 6 months. I don\’t want my boy to go through that again. I don\’t want to go through that again.

But then, what if the first 6 months are a success? A celebration is certainly in order. But I still fear. Should I let my son drive at 16? Puberty increases the risk. I know there are many children that grow out of this, but I don\’t how this Mom will be able to grow out of this fear?