The first few weeks on Depakote appeared to be promising as his head drop seizures started to decline and we were not seeing many of them. We took this as a good sign that things were moving in the right direction. He was still having absence (staring) seizures during this time, but the drop seizures were declining and that was great because those were the ones that caused him physical harm (he hit his head so hard one time that he split his lip open). We thought we were moving along positively, but little did we know things were just beginning.
At 5 AM on Thursday, February 23rd I woke to a strange noise. I turned on the light and looked down next to my bed and saw Joshua laying on the floor. He was convulsing, foaming at the mouth, his eyes were rolled back in his head and his lips were blue. I yelled for Chip to call 911 immediately and watched him helplessly in this state, not knowing if he was even breathing. By the time the paramedics arrived he had stopped convulsing, but was laying non-responsive on the floor. I now know that this is common after a seizure of this sort and is called the "postictal" stage, but at the time I was terrified. Joshua had just had a tonic-clonic seizure (better known as a grand mal seizure) which was his 3rd seizure type. We were transported by ambulance to Mary Bridge Children's Hospital. Joshua stayed in the postictal very tired stated for a few hours, but he was responsive by the time we got to the hospital.
We spent the majority of the day in the ER and they gave him an extra "boost" of Depakote in the hospital through an IV. When they drew his blood they discovered that Joshua was not at what they call a "therapeutic" level which means the right level you need to be for your body for the medications to be effective. To help get him to a higher level they gave him extra medicine through the IV. We were released that afternoon and told that if he had another one not to call 911 unless the seizure lasted more than 2-3 minutes or if he was not breathing.
On the ride home from the hospital Joshua fell asleep in the car and on the freeway he had what I thought was the beginning of another grand mal seizure, but it stopped suddenly and it was more of a jerking motion (his arms shot up above his head and then his head dropped). I had no idea at the time, but this was the first real Myoclonic seizures he had that we witnessed. This was now a 4th seizure type we had seen from him.
Joshua had another tonic-clinic seizure the next morning (again at 5:00 AM), but it lasted about 1 minute so we did not call 911. He slept afterward for a couple hours (common in postictal state) and then woke up fine. Luckily, he has not had (knock on wood) a grand mal seizure since Feb. 24th.
After these two tonic-clonic seizures I really started to get the sense that we were dealing with something a lot worse than first thought and started to really wonder what his life (and ours) were going to be like. We got very little sleep and installed a video baby monitor in our room so we could watch him all the time. It is hard to sleep when you are afraid your child will have a seizure and what would happen if you were not right there to protect him. We had a lot of scary, sleepless nights.
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