The last couple of weeks have been really crazy for my son and myself. My son has a number of health issues including epilepsy, type 1 diabetes, tourette syndrome, and non-epileptic seizures. Last week his school called me and reported that he was have a round of vocal and movement tics that was lasting hours. Since it was not stopping I had to go pick him up. He came home and slept. His tics can be extremely physical and they wear him out.
The next day the school calls again and reports that he had several clustered seizures. They ended up calling 911 and he was taken to the hospital. When I got to the hospital all was well. The seizures had stopped. The hospital did a blood work up and sent us on our way. Once again my son came home and crashed.
By this time the school was getting anxious and were insisting that we consult with a doctor to see what can be done. This is pretty frustrating. There are no miracle pills that make seizures go away, epileptic or non-epileptic. Likewise for tourette syndrome. I could tell the school was uneasy with the whole situation. So, I kept my son home on Friday so that I could watch him to see if the seizures occurred again. They didn’t. Meanwhile the school is breathing down my neck anxiously waiting to get notice of the miracle cure. I watched my son over the weekend where he had numerous tic bouts, but no seizures. It is then that I suspected what the school thought was seizures was actually either a tic or non-epileptic seizures. Even so, I felt like I was being pressured by the school to do something to help my son, or maybe to make their job a little easier. [Yes, that is vicious, but that is how I felt. In the past the school nurse had suggested other medication such as medications for ADHD, and valium.]
On the following Monday I tried to get in to see the neurologist, which I knew would be impossible because he is usually booked months in advance. I didn’t want to go to a different neurologist because my son has a pretty unique condition and I needed to stick with the neurologist that was most familiar with my son’s case. Good neurologists are hard to come by. It took me almost four years before I found this one.
Since I couldn’t get in to the neurologist, I tried to get into my son’s pediatrician. My goal at this point was to discuss the tics and/or non-epileptics seizures, especially when the events went on and on. Of course I couldn’t get in to see his regular pediatrician, so I took the next available doctor. We went in and the pediatrician suggest that we try an anti-depressant. We had tried this in the past with no positive results, but I thought maybe this time would be different. My son is older, and we didn’t really adjust the dosage.
I will be honest with you I was not comfortable putting him on the medication. I have had some personal experience with anti-depressants and have experienced the positive change that they can make on your life. Even so, I was hesitant because he was only 12 years old and what if this wasn’t really necessary. There are dangers of being on anti-depressants. Stories of kids attempting suicide kept running through my head. Then again, my son’s quality of life was greatly affected by these movement disorders.
Coincidently, the following Monday we were going to see my son’s neuropsychologist. We briefly talked about what was happening and that he was now on anti-depressant medication. She said that the medication that was chosen is the best choice and is the only anti-depressant that has been researched for children. That made me feel a little better. Coincidently I ran into the our neurologist’s nurse and she said she could fit me son in to see the neurologist after the neuropsych appointment. Wow, bingo!
So we saw the neurologist. We discussed what happened and he said that he didn’t want to change anything until we see a pattern or a reoccurrence. They also were going to check his medication levels via a blood test. There is a possibility these seizures happened because his levels were low and causing “break through” seizures.
For the next week my son had bouts of tics and/or non-epileptic seizures. I saw no evidence of seizures. Then today, the school calls and reported that my son was having seizures. By this time I did not trust the school’s ability to distinguish between a seizure and either tics or non-epileptic seizures. They requested my permission to call 911. In the past it was my policy when in doubt go to emergency. Meanwhile my son, who is no longer having events, says he doesn’t want to go to the hospital. I talked to the nurse to get a better description of what was going on. She said that it all started with tics and then became a cluster of short seizures. She then described what was physically happening. At that point I told her I was on my way and that she should not call 911. I know this was a big risk, but no one knows my son and his health issues better than me.
I got to school and my son was asleep. I talked with the school nurse and gave her permission to talk to either our neurologist or his nurse. I asked her to describe what happened and they can give us guidance. Meanwhile, I took my son home, and he went to sleep. At this point I was pretty confident these were not seizures. I knew I could not convince the school nurse that these were not seizures. We had been home for about an hour and the neurologist’s nurse called. Before she could even talk I said, I don’t think they are seizures. She said that our doctor also agrees. She tells me that she had a long talk with the school nurse and was hoping she had talked her off the ledge. She also said our neurologist wanted my son off the anti-depressant medication. I really trust the neurologist, more so than a pediatrician. I am a little bit relieved that we can drop the anti-depressant medication.
At this point I dread taking my son to school tomorrow. The concept of non-epileptic seizures is very confusing. My concern at this point is that the school would swing to the other extreme. I would have to face that issue when it happens.
Come back after tomorrow and I will update you on what happened. Keep your fingers crossed.