The decision to take Robert off of Trileptal (Oxcarbazepine) was very difficult. It felt as if I was saying, “Why no, Robert, you can NOT have seizure control.”
Robert has tried his entire life to achieve seizure control. Our parents did what they could in order to reach that goal when he was a child. When Robert lived on his own, he signed up for any and all drug trials possible (by this time, against our dad’s wishes). He volunteered to be in a study for the Vagas Nerve Stimulator and the Deep Brain Stimulator.
The Deep Brain Stimulator did seem to work for him (and we found out later he was in the group that had the device “on”) but he developed a life-threatening infection and they had to remove it through emergency surgery.
When I took over Robert’s care, I heard him pray at dinner for God to allow him to not have seizures any more.
Then I heard him pray this again and again and again.
Every day Robert has seizures. Many times, multiple seizures a day and the seizures have increased in frequency over the last several months. Robert does not usually realize when he has had a seizure (although he sometimes does and tells me he was able to fight it off.). I found out pretty quickly that he gets agitated when I tell him he had a seizure. He would argue that he didn’t have one.
“I know for a fact I didn’t have a seizure” was the phrase I heard before realizing how much it was upsetting him to know he continued to have seizures.
I don’t tell him anymore but I keep a detailed log of the seizures. The only awkward part of this “don’t ask, don’t tell” policy is when we are in the neurologist’s office and Robert is asked how he is doing. Robert replies, “I haven’t had any seizures” and I have to discreetly hand the several page log to the doctor.
Robert then will usually fall asleep and the neurologist and I can discuss any possible treatments for his worsening seizures without upsetting Robert.
One of these treatments was Trileptal. For the starting dose, it was 300 mg twice a day.
Robert had 100% seizure control for several days in a row.
I would have been jumping for joy if he also wasn’t practically comatose – sleeping constantly, difficulty walking and being extremely irritable and angry when he was awake.
So no, Robert, the seizure control you pray for every night happened but at a cost too high.
Now we are trying again but at half the original dose. (I have to thank readers here and on the Robert’s Sister Facebook page for suggesting it.)
The neurology appointment was just over a week ago and I wanted to wait until the weekend to start the medication at the lower dose. The week was full of chaos due to my mom-in-law breaking her femur and Robert on the edge of the pneumonia cliff (he’s off the antibiotics and the cough has returned) so thought it best for “life” to settle down before starting the new med.
Sunday night was the first dose.
By yesterday, he woke up extremely tired and slow and needed a lot of assistance dressing. That could be attributed to still coughing at night or staying up past bedtime to finish one of his puzzles (it happens).
This morning, he was again sleepy and slow and just the slightest bit obstinate. Walking seemed to be a challenge but, again, he could just be sleepy.
He has had one seizure since starting the new med and that happened this morning. We’re watching him like a hawk and just keeping routines the same and working at earlier bedtimes.
If the medication doesn’t work out this time, there is another one the doctor wants to try and then there is the RNS. Robert’s neurologist has mentioned it, said it recently was approved by the FDA and he has even requested it already. The RNS would be available for Robert by late summer so we have a little bit of time to try other medications first.
Why, when Robert is almost 49 years old without seizure control and exhibiting the devastating effects of that, do we still try these new treatments?
My answer is simple: Robert is not giving up on his prayers and I don’t want to give up hope.