Because seizure medication regulates brain waves you have to be really careful when adjusting dosages and especially careful taking them off the meds. So we would take him down 15 ml every two weeks. There was always a very distinct pattern so at least we knew what to expect but it was hard. The first 2-3 days he acted normal, then the next several he would be exhausted. This is when the nightmares would start and we would be up with him 2-3 times a night. After a few days of exhaustion he would get really angry and frustrated and sometimes even violent. He would constantly throw tantrums, be extra stubborn, and was terrified for me to leave him. After a few days he would slowly start acting like Nathan again and then it would be time to change his dosage again.
The hardest time was definitely the first four weeks. The last two weeks he still struggled but not as much as the first four weeks. We could tell his body was getting used to the lack of medicine in his system and we started seeing more of the Nathan we used to know.
I don't know how to really describe it. He was always our Nathan but putting him on the seizure medication a year and a half ago changed our little guy. He became more irritable, more stubborn, more frustrated and more short tempered. Once we got through the first four weeks we started seeing more sweetness and less temper. More happiness, less irritability. I think Nathan could see the change in himself too because once he got off the medicine completely he just seemed relieved.
Because Nathan was put on the medicine so young we had no idea how much it had been affecting his moods and behavior. He is still a two year old who throws tantrums and challenges everything but its amazing how much more mild is moods are now. Matt and I are so grateful this road is behind us and that Nathan is still seizure free and not expected to have seizures anymore!
Nathan's last night taking the seizure medicine!
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