The same thing happened. By the time it was Nemer’s bed time, his seizures clustered as soon as the poor guy fell asleep.
The nurse rushed into the room to give Nemer Ativan the medication he was given twice and twice it didn’t help with his seizures.
Nurse: “I talked to neurology fellow resident and he said to give Nemer Ativan.”
Me: ” But Nemer was given Ativan twice before and it never helped him.”
Nurse: “The fellow resident said he wants to try it again.”
Me: “We already know that Ativan doesn’t help him. Not even one dose of Fosphenytoin helps him. He needs at least two doses of Fospehytoin to help stop his seizures.”
Nurse: “I know, but that’s what the doctor ordered.”
Me: ” I don’t want you to give my son Ativan. Why would you give him a medication that doesn’t work for him, then give him another medication on top? Why load his body with three full doses of very strong anticonvulsant while we can only give him the one we know it works?”
Nurse: “ok, i’ll call the fellow resident.”
Few minutes passes by, then nurse comes back : “ok, he said we’ll give him Fosphenytoin, first we’ll try the one dose because we don’t want his blood sugar to drop again, and if that doesn’t help we’ll give him the second dose and keep monitoring his blood sugar.”
Nemer ended up getting two doses. His blood sugar dropped down but it was manageable.
The new plan:
Doctor: “It’s good news that Nemer responds well to Fosphenytoin. We would like to try and introduce phenytoin which is from the same family of fosphenytoin, as a liquid form at a very low dose through his IV. If that works, then he can switch from taking it through IV to my mouth and that could be one of his regular ant-seizure medications.The only issue with phenytoin is that children under the age of two their bodies doesn’t absorb well this medication, but lets hope it will work for your son. ”
Again, for the three to four days following Fosphenytoin Nemer was lethargic and non-responsive. And no seizures. The switching from Fosphenytoin to phenytoin was done during those days.
during this period a good number of different specialists came by to check on Nemer and discuss his situation. I met neurologists, epilepsy specialists, metabolic specialists, pediatricians, and dietitians.
I remember the exact words from one neurologist :” Honestly, Nemer is challenging us”.
Some said “unfortunately he won’t be seizure free”, others said “we will control those seizures.”
Apparently having Polymicrogyria, indicates the possibility that Nemer’s seizures may never be completely under control, and there is always the risk of him having breakthrough seizures.
The decision was that Nemer will be discussed at the seizure conference this Wednesday to talk about other options for seizure treatment because so far it seems like his chance to get good control of seizures with medication is low. And then they will meet with me and Nemer’s father to discuss those options.
Aside from that conference and meeting we knew some of the options like: surgery, Ketogenic diet, nerve ……
That was Tuesday Dec 21st.
Nemer was having seizures here and there, a total of five or four seizures a day but no clustering.
To me, it started to look as if he has a specific pattern after taking the fosphenytoin: The first two days he is very sleepy, non responsive and no seizures; the third day he is more alert and awake and gets random timing seizures, then they occur exactly every hour, then as he tries to sleep, he gets a seizure the minute he falls asleep, he’s up, he goes back to sleep in a minute or two, he gets another seizure, he’s up again, he goes back to sleep in a minute or two, he gets another seizure…and so on until he takes fosphenytoin, and then it goes back again.
At the hospital they have a parameter for when a patient should get an anti-seizure emergency medication.
. If the seizure exceeds four minutes.
. If three or more seizures occur in less than half an hour.
. If seizures occurs every five or less minutes.
Wednesday Dec 22nd, I met a new neurologist who decided that Nemer is doing fine and if things stay this way by tomorrow we can go home.
I explained to him the pattern that I think Nemer is going through, but it didn’t make sense to him.
I wasn’t comfortable to leave. I had a feeling Nemer’s seizures will cluster this night or the night after. I asked to keep him at hospital a bit longer, but they thought it wasn’t necessary. What about the seizure conference; meeting with us and discussing other options? They said it can be done later.
I wanted to believe them and ignore my doubts. After all, they are the doctors, they know better.
Thursday Dec 23rd, despite Nemer’s seizures we were given the discharge forms.
We went home Thursday night and this time Nemer was on clobazam, keppra and oral phenytoin, and Ativan as an emergency medication.