It has been a while since I have written, but there has been a lot on my mind. Towards the end of February I was reflecting what an easy kid Boo Bear is. Ninety nine percent of the time he is smiley, happy and usually has a giggle at the ready. So far, I had not seen any of the horrible behaviors that other parents like to tell me I will see during the teenage years. He is happy and healthy and completely himself. Karma must have been listening. The next morning I was at work, having a dance party in the kitchen with my nanny babies when my phone rang. It was Boo’s teacher, Sonia. Apparently, he had had a two minute tonic clonic seizure and had turned blue. 911 had been called and she was about to ride to the ER with him in the ambulance. I called my employer and as soon as he arrived I headed for Children’s Hospital. When I arrived, Boo was in a deep sleep. The doctor explained that seizures are very tiring and he would probably be groggy for the rest of the day. Blood samples were taken and everything came back normal. Eventually, the doctor called it an ideopathic seizure and sent us home, telling us to call the epilepsy center. Robert and I took our groggy son and headed home. As we left, the nurse told me that we would now begin living a “new normal”. She was correct. Even though it has been two weeks since the seizure, every time my phone rings or Boo makes a strange noise or movement, I jump about 2 feet in the air.
Two mornings later Boo had an EEG. The results were slightly abnormal, but did not show any seizure activity. I was not surprised. The doctor was very eager to start him on Keppra, and also wrote a prescription for a rescue med. He told us to come back in 3 months. I left with very mixed emotions. I do my best thinking when I am moving, and it was a beautiful, late winter day. I went to work, loaded my nanny babies in the double stroller and walked for 8 miles. Upon my return I reached this conclusion: So far we had only seen one seizure, and I was not willing to call this epilepsy. If Boo has another seizure, then I will give him the diagnosis. The side effects of Keppra scared me, especially the part about slower cognition. Boo has worked too hard to gain the skills that he has, it would be cruel to make things even harder. I got the meds filled and they are sitting in the back of my medicine cabinet. I hope I never have to use them. The rescue meds travel with him wherever he goes. The Keppra sits by itself on the shelf.
Boo has an amazing nurse practitioner named Jane Marie. We were due to see her the next week. She has worked with Boo for years and autism is her specialty. I wanted her opinion on the whole matter. When we saw her she was sorry about the seizure, but not overly surprised that he had had one. Seizures are more common in kids on the spectrum than among their neuro -typical peers. Seizures are even more common among kids who are non verbal. They often appear either in toddlerhood or adolescence. It seems that Boo was right on schedule. She agreed with my not putting him on Keppra but said we needed to see a neurologist and she had just the person in mind and she would call him that afternoon. I left her office with Boo, feeling much relieved. The next morning I got a call from neurology. Though Dr. F had a waiting list that stretched until the end of August, somehow Jane Marie had gotten us an appointment for March 26. The nurse I spoke to was lovely and said if Boo had any seizure between now and then I was to call her immediately. This was very comforting as I was unsure what I was to do if Boo had another seizure. We could always go back to the ER, but that is highly stressful. He pediatrician probably would not know what to do. The fact that I did not know what to do if another seizure occurred had been weighing heavily on my mind.
So, where are we now? For the moment, all is well. Boo is his usually cheery self. He is enjoying swim practice on Saturdays and hanging out with his PCAs on the weekends and after school. He is happy to go to school every morning, though getting him out of bed is a bit of a struggle. He is, after all, a teen and he loves his sleep. In a week and half we will see Dr. F and take things from there. If he says Boo needs to be on meds, then I will follow his instructions. In the interim, I shall watch and wait. Thank you to all the autism parents who reached out to me right after the seizure and gave me your sage words of advice. It is much appreciated and makes me feel that Boo and I are not completely alone on this adventure.
Harriet's Hedgehogs and Autism Advocacy 