Monday night, the thirteenth of December, at 11:30 pm, my husband and I were rushing to leave the house to take Nemer to the emergency following the advice of the neurology fellow resident at SickKids: “you should take him to the nearest hospital to give him medication that should break the cycle of seizures”. This time Nemer was clustering, meaning having a seizure every five minutes.
It was snowing alot that night. The SickKids is 45 minutes away from our house. We had to call 911 because it was the fastest way to get Nemer to SickKids. However, due to Nemer’s frequent seizures and the fact that the ambulance did not have the medication to stop the cycle of seizures they had to rush him to the nearest hospital which was North York General Hospital.
There at North York General Hospital we had to explain, “while Nemer was having a seizure every 3 minutes, Nemer’s situation, medical and health history to three different doctors before giving him a medication to help him.
Finally they gave him Ativan through the IV. Ativan is a drug used for the short-term treatment of seizures. The one dosage did not stop the seizures. They had to give him two more dosages. Nemer kept having seizures but less frequently until he finally fell asleep.
The fourth time we were asked to repeat Nemer’s story from birth, we asked to be transferred immediately to the SickKids.
Surprisingly that was arranged. At 3 am of the fourteenth of December a 911 ambulance picked up Nemer and myself from NYGH and transferred us to SickKids, while my husband followed us in his own car.
Procedures took its course at the emergency department until we were moved again to 5C (Neurology floor). The plan this time was to increase Keppra.
Nemer’s seizures kept occurring throughout the day, but they were attacking whenever Nemer was trying to fall asleep. The minute he would fall asleep in my arms I would keep looking at him knowing he will get a seizure…. now!!
I just knew when Nemer will get a seizure. When he is fully awake, watching TV , eating, or playing I would know a seizure will happen before it happens.
His night seizures were the worst. It was torture for him and us. That night in the hospital Nemer’s seizures clustered.
It started the first time he fell asleep. In few seconds he got a seizure that woke him up. In two minutes to three minutes he fell back to sleep , then again in few seconds he got a second seizure….and go on. After the fourth seizure he was given the Ativan twice through IV. It didn’t help at all; it didn’t even slow the frequency of the seizures. So the fellow resident decided to give him Fosphenytoin.
It was the first time for Nemer’s little shaking body to be introduced to Fosphenytoin ;an anti-epileptic used only in hospitals for the treatment of epileptic seizures.
As I remember, he was given the maximum dosage of the medicine for his body weight. In few minutes seizures stopped and Nemer was able to sleep in peace without interruptions.
That was around 1 or 2 am. For the rest of the night we dealt with another issue. The high dosage of Fosphenytoin caused Nemer’s blood sugar to drop low. So they gave him through IV extra fluids with sugar.
For the following three days Nemer was completely off. His body was very weak, no weight bearing at all. He barely ate or drank. He was lethargic and sleeping most of the day. Most of all; no seizures.
Doctor’s new plan this time was to increase keppra.
Keppra was increased , Nemer’s seizures as well.
The plan for discharge from hospital was Friday December 17th, the third day following the introduction of Fosphenytoin.
By the end of mid day of Friday Nemer was more alert and responsive…which carried bad news with it : seizures. Nemer started having seizures every hour. The discharge form was ready for us to leave. I was happy to go home but at the same time Nemer having couple of seizures with an hour difference between them made me suspicious.
Reporting the third seizure to doctors made them change their mind about the discharge and decided to keep Nemer.