Tags: gelastic seizures, HopeforHH.org, hypothalamic hamartoma, Living with Hypothalamic Hamartoma, medication changes
Since starting the Carbamazapine to help calm Faith, I have noticed a relief in Gelastic/complex partial seizure activity, going from hourly seizures to every 2 – 3 hours. Then last night, as we are cuddled up in bed reading a story, she has a cluster of Gelastic seizures, one after another, with 5 minutes between them, each lasting a few seconds. This went on for about 20 minutes and then the full gelastic stopped, but she continued to have a smirk on her face as though she was going to have a full gelastic. She finally went to sleep without any seizure activity after 30 minutes. This was just so out of the blue I couldn't understand why this would happen after such a good spell and there didn't seem to be any stimulation to cause it as she seemed well in herself. Although, if anything has been constant throughout our HH journey, it has been the unpredictability of the condition.
The next day, she was very quiet getting ready for school, when I dropped her off I told Sue (her one to one), about the night before. Sue texted me early during the morning to let me know Faith was struggling, being very angry and crying constantly for no apparent reason. I said I would come and pick her up, but Sue said she would like to give her time to calm and would take her out of the classroom for some quiet time. I agreed and she rang me after dinner, to say Faith seemed a little better after her dinner. When I picked her up, she seemed totally spaced out, she didn't seem to be focusing properly at all and didn't answer me when I spoke to her. Sue came out with her and informed me that after dinner, she hadn't been as emotional, but had become quite vacant at times to the extent that when Sue had clicked her fingers in front of her eyes there had been no response. Then when she did come around, she found it hard to answer questions and appeared to have forgotten her teachers name and two of her friends’ names. I sat with her for a bit on a bench in the school yard, until I could see she was looking at me properly, and she started talking to me normally. I explained to Sue that I felt all this behaviour had been some sort of seizure activity and maybe it would have been better for her, if she had come home a little earlier. On the way home, she fell asleep in the car, which she hasn't done in a long time, though on waking seemed a lot better.
Who knows what that was all about, though I did find it a bit frightening how she could forget the name of one of her favourite teachers and two of her best friends. At times she does forget little things and will ask the same question a few times but this seemed worse. I talked to our epilepsy nurse about the incident and how she’d seemed to have a vacant episode. Oh dear, she says that’s unusual, we will have to keep an eye of her. Does she not realise, that’s all I ever do, keep an eye on her?