Last Four Weeks
Friday morning Nemer had one seizure while he was eating breakfast. Two hours later he had another one. Then nothing until 3 pm. It was his nap time and that’s when he started getting recurrent seizures. After having three in less than 2o minutes I gave him Ativan twice but didn’t work. Nemer kept having a seizure every twenty to twenty five minutes.
I called the neurology doctor on call at SickKids and he advised me to take Nemer to the emergency department as soon as possible.
What I suspected happened and even worse. This time Nemer’s seizures were clustering in the middle of the day while he’s fully awake.
We didn’t want to call 911 because we didn’t want to deal with explaining Nemer’s life story to some random emergency doctor at North York General Hospital, then wait for long hours to be transferred to sickkids.
During our drive to the SickKids Hospital Nemer was having a seizure every 10 minutes.
At the emergency department Nemer was given a room immediately because of his recurrent seizures. Right away we called the neurology doctor, explained to him our resentment and told him the boy you discharged last night is back to the emergency in less than 24 hours.
In few minutes the doctor was down in Nemer’s room. He ordered a blood test and to give Nemer Fosphenytoin. To his and our surprise the blood test showed that the new medication Nemer’s taking “the phenytoin” is at zero level in Nemer’s blood. Meaning that his body wasn’t absorbing phenytoin at all. Meaning that what was controlling Nemer’s seizures for the last few days at hospital was only Fosphenytoin. Meaning that doctors rushed to discharge Nemer from hospital before checking the new medication’s level in Nemer’s blood, given that this particular medicine is common to not be well absorbed by younger kids.
That night Nemer ended up with a total of 20 seizures!!
Something was wrong.
The fourth Week:
Few hours after midnight we were given a new room in 5C “Neurology Floor”.
It took Nemer’s seizures a while to stop after the Fosphenytoin.
The Last Four Weeks:
Nemer stayed in the hospital for the following four weeks. I can say that those days; from December 27th until January 21st; were the most challenging days in my life. What made it most difficult was the pain Nemer’s body and brain was going through. A pain that was impossible for me to grasp and crush under my feet.
The only thing I was able to do is stand up and speak on his body’s and brain’s behalf.
Every time he was in struggle his eyes would be directed at me saying: I trust you mommy; I need you to do the right decision for my little aching body.
What killed me most is I didn’t know what is that right decision. what is the right move? More or less medication? Brain surgery? Special Diet? vagus nerve stimulation?….
I wont go through the datials of each of those four weeks because to me it felt like one long day that didn’t want to end!
Phenytoin was cancelled from nemer’s medication list, and Valproic Acid was added.
One of Valproic Acid side effects is severe lever failure , that is why Nemer had to take Carnitine supplement to help prevent that from happening.
The new medication combined with clobazam and keppra didn’t help controlling the seizures. Every three to four days Nemer’s seizures were clustering. And it wasn’t limited to nights only. Clustering was happening mornings, afternoons, evenings and/or nights.
The big picture for me and Nemer’s father was:
. None of the medications tried so far is working, if anything the situation is worse.
. Nemer’s seizures are more in frequency and longer in duration and more aggressive in nature.
. The only thing was suppressing seizures is the emergency medication “Fosphenytoin”; which made Nemer very lethargic and non-responsive for three days.
. Once Fosphenytoin is out of Nemer’s body system , seizures start occurring freely.
. The so-called safest anti-seizure medication “Keppra” has to be weaned off.
. A new option other than medication has to be discussed.
For some reason, this big picture wasn’t clear for Neurologists who worked with Nemer at SickKids, or at least parts of this big picture.
What was clear for most of them is the option of brain surgery. The natural option Ketogenic diet was somehow scary and very complicated in so many ways.
Another medication was added on top of Keppra, clobazam, and valproic acid. It’s called Topiramate.
I have to confess that I regret approving adding this last anticonvulsant.
A mother’s and father’s hunch inspired us that Nemer shouldn’t be on Keppra.
We asked for Nemer to be completely weaned off Keppra , and to be discussed sooner than later in the seizure conference so that we can know what other options can we look at.
That was done. They started decreasing Keppra slowly and Nemer’s case was finally discussed at the seizure conference.
The funny and at the same time sad thing one of the neurologist came to me with all her team members telling me that she thinks Nemer is not a candidate for a brain surgery. Few days later , I found out from the same team that Nemer is a good candidate for the surgery. In fact I was told that Nemer needs a brain surgery within a couple of months!!
The seizure conference outcome was:
. Because of Nemer’s MRI diagnosis;the Polymicrogyria; he will never be seizure free.
. With anticonvulsants, Nemer has less than 5% chance to get his seizures under control.
. The best option for the control of his epilepsy is Hemispherectomy; brain surgery.
My husband and I met with the surgeon who operates the Hemispherectomy. He explained how the seizure is critical for Nemer. He explained the surgery techniques, risks, and side effects. And he emphasized that we should make a decision about the surgery in two to three months.
With all that discussion and thinking about options and surgery, Nemer’s seizures were not getting any better. And on the end of every week there was an attempt for a discharge from the hospital despite the high possibility of us coming back the following day to the emergency department. At one point one of the neurologists told me : “that may be something you have to do”. And another neurologist said: “I don’t know if I should say this to you but you need to put up with it.”
As a mother who her son’s eyes trusted her from the first glimpse to keep them cheerful, I didn’t put up with it.
A week before the day of our final discharge , neurologists came to me with their new plan to increase Valproic Acid and Topiramate to the maximum dose and to add another medication that earlier didn’t work for Nemer.
But this time it was my decision. No increase of any of the medications. No adding of a fifth medication. Nemer has the right to try the most natural way for treating epilepsy which he was supposed to be given this option after the failing of the second medication. This time I demanded that Nemer should be started on the Ketogenic Diet.
Like all other parents with kids who have uncontrolled seizures, they scared me off this strict diet simply because it’s a LIFE STYLE!!
They said: it’s a very difficult commitment, it’s not healthy, it causes bad constipation, it had side effects, may not be well tolerated by your son, it will require you son to get a G-tube, it had a very long waiting list, it will change your life style.
And I said: after being a “special mom” for two and a half years, no one knows about commitment and changing life style better than me. I want my son on the ketogenic diet before leaving hospital.
Comparing the natural side effects of the Ketogenic diet with the unnatural side effects of anticonvulsants and the serious risks and side effects of a brain surgery , I was willing to take my chances.
The 19th of January, 2011 was Nemer’s first day on the ketogenic diet. On that day I had a huge amount of information poured in my head, it’s not even funny.
Putting a child on the ketogenic diet requires one/ both of parents to get five days of training and teaching of the diet that takes place in the hospital while the child is under good monitoring and observation of dietitians. The ketogenic diet is high on fat and very low on carbohydrate so it works on changing the body’s metabolism by forcing it to burn fats rather than carbohydrates.
Nemer’s body was given only two days and a half to adjust to the new diet. And I was also given only the two and a half days to be taught and trained on the diet.
Luckily, the first two training days I had one of the best nurses I have ever met. Her name is Ziggy. I wanted to mention her here because I’m very thankful to the way this woman is dedicated to her work.
We were discharged from hospital on January 21st,2011.
Nemer tolerated the high-fat diet very well. The first week or so his water intake was a bit challenging but that was resolved.
All the diet challenges that they’ve claimed will stand in the face of the diet being successful for Nemer were gone with the wind.
Nemer’s last seizure was on January 21st, 2011. He has been seizure free ever since.
Today, I know that I have fought the right fight for my son, and I have took the right decision against all the other’s for his seizure control, and most of all I know that my son’s trust in me will never fail as I see his beautiful smile every morning.