It all started innocently enough, Jacob looked like he was coming down with something and was irritable for it. But the screaming had a different "quality" to it. He would shriek for like 20 seconds and then would almost drift off, only to repeat the cycle over and over again. When he fell asleep in my arms at about 6pm that night, I thought "good, let him sleep it off and I'll take him to the family doc in the morning if he's still sick". By 8pm he was still sleeping. In fact, he hadn't really moved all that much in terms of changing positions in my arms. I went to change him for bed and he didn't wake up. I tried calling his name, with no response. I tried scraping my fingers along the bottom of his feet with no response. Jacob was in what they medically call a "post-ictal" state. I call it plain terrifying.
I made the drive to the hospital within 3 minutes, running a stop-sign and red light on the way. I was met at the door by a security guard who took my limp son out of my arms and rushed him through the double-doors of the ER where a team of doctors immediately started working on him in the hallway. He was hooked up to every machine going, an absolutely horrifying vision for any parent to see. All the regular tests came back normal, no blood sugar problems, no sign of trauma, etc. It wouldn't be for a few more weeks that we would get the results of having an "abnormal EEG suggestive of childhood epilepsy".
Jacob has for what seems like forever had "night terrors". When we met up with our neurologist we found out that his night terrors were actually one of his presentations of seizures. His sleep-deprived EEGs showed that he had quite a few seizures when he slept, mostly at that time coming from the temporal lobes, which explained quite a bit about his fear responses and his language problems (slurred speech, unable to find the "right" word, etc). Jacob was put on Trileptal which helped with his night seizures for awhile, but we would have to go through regular increases in order to have seizure control. For a few brief months I had my son back.
In September of 2006 Jacob started Junior Kindergarten. He also developed occipital lobe seizures. He would complain of visual distortions, seeing colors, seeing everything either larger or smaller than reality. Obviously, for such a young little guy it was likely terrifying for him just as it was to watch him go through it. He would beg for us to make the seizures go away, and then would tell us "nothing you do helps". It was heartbreaking to say the least. The feeling of not being able to help your own child is one that I don't wish on any parent, it's devastating. Jacob was started on Topomax to help with the occipital lobe seizures, which started another long nightmare.
We had to keep increasing the Topomax in order to get better seizure control. Unfortunately, Jacob did not do well on Topomax, or as some other parents of children with epilepsy call it, "Dopomax". My bright child who was able to read short sentences and knew all of his phonetics upon entering kindergarten regressed. He was unable to feel his bladder being full. He was irritable. But academically he suffered the most, he went down to being only able to identify a few single words. His attention span was non-existent and it caused him to have ADHD type of symptoms. His behaviour was simply off the charts. He then started to become very aggressive with others, which led to him almost being kicked out of school and daycare. We took him off this medication in February 2009 and he has improved so much. I now hear how different of a child this is, that he actually smiles again. I have my old Jacob back once more. He's been put on Valproic Acid in place of the Topomax.
In June/July 2008, Jacob's seizures changed yet again, he started having more generalized seizures and also absence seizures. A referral was made to The Hospital for Sick Children to evaluate him for potential brain surgery. We had this done in January 2009, and it was like a miracle treatment, no seizures that week until after the EEG machine was taken off of him. If only he could live hooked up to an EEG machine because apparently that's the cure for him! This 5 day long test, exhausting for both parents and child, will likely be repeated again in the future.
Jacob has adjusted to his "new normal". He is able to explain his epilepsy to others as his brain sending out mixed up messages to the rest of his body. For a 5 year old child, this is quite unbelievable! He fears others catching epilepsy from him, but we regularly talk about how it's not something like a cold or flu, it's something that happens in your body without being due to germs. He's very aware of his seizures and is thrilled when he meets others who also have seizures. He's one brave little guy whose illness will only make him stronger in the end.
Life for a parent with a child who has this illness also goes on, although a bit differently. I'm very aware of what different activities might serve to trigger his seizures, and while I hate to limit him in these activities, I also know that there is no reason to subject him to these things. We won't go to loud restaurants as he is sound sensitive. If a store is playing too loud of music and refuses to turn it down, we leave. Even Chuckie Cheese is difficult as he tends to get easily over-stimulated by the lights and sounds. Going to the movies is difficult for him, the big screen poses a problem with a lot of light and color changes which triggers seizures. Even though he really wants to learn to play hockey, I'm very hesitant to allow this because of the reflection of the lights on the ice triggering seizures. I still sneak into his room at night and worry about his night-time seizures, and I'm almost always waiting for a phone to ring to tell me that he's had a generalized seizure and is on his way to the hospital. It's a slow adjustment with a lot of paranoia, but I'm learning to relax. I know that I can't stop them from happening, but I can make it easier for him. I can help to avoid the known triggers and offer a little insulation that way. One of his favorite things to do is amusement park rides and while I'm always aware that this can trigger them as well, a kid does have to be a kid sometimes. This mom shall get through life with epilepsy as well.