Seizure Saga

Sebastian just had another seizure about an hour and a half ago. It lasted five minutes. His first partial/focal seizure was a week and two days ago. It lasted less than a minute, I think. I’ve been writing this blog ever since. Well, I started it even before that, when the twitches started. But I’m getting ahead of myself…

Sebastian had an ambulatory EEG about two weeks ago. We took him to a place called Digitrace where a very nice woman applied gooey wax-like spots in carefully calculated places, previously marked in red, all over his head. Sebastian did not like it one bit. He does not like his head touched at all, not even his ears to be examined. We took him home with a new hair style, hidden beneath a white gauze wrap, which tried to keep the wires and the box on top connecting all the wires with an even bigger box to be carried in a bag around his waist, or on his back. We replaced the first round of gauze by the end of the first day and hoped it would last the next round of a 48 hour EEG. It did not. We tried to get creative with hats and bandannas, but the equipment still slid down and continued to prove very cumbersome.

Here he is sporting a P-Diddy look.
Sebastian Rocks

After 48 hours of monitoring, much of that time also attached to a video monitor, there were no seizures recorded. What they found instead was seize activity or irritability, focal discharges and focal activity. Focal meaning in one place and in Sebastian’s case, the left frontal lobe. The neurologist explained that there were sparks but no fire. He said there was no sign of infantile spasms and no signs of seizures from a clinical standpoint. The day after the EEG Sebastian started twitching in his right leg.The twitches got worse when he was wearing his Theratogs suit, so I took it off. When I phoned the neurologist he immediately wanted to put him on Trileptal, an anti-convulsant medicine.

Sebastian had never had twitches prior to the EEG. The startles he was having were likely not seizures but the doctor thought these twitches were. Very tiny ones. I felt something had to have been causing them and I was hoping to discover what. The twitches also started when he went on Amoxicillin for an ear infection/cold etc. I read up on side effects for Amoxicillin and one of them was seizures. When I called the doctor he did not think this was the case, although stated that fevers can trigger seizures. Sebastian hadn’t had a fever. He said to monitor Sebastian for 24-48 hours before starting him on Trileptal.

I had hoped the twitches would lessen as the Amoxicillin slowly left his body. They did not. In the meantime, I had to wait two days to get the anti-seizure medicine from the pharmacy as they had to order it from another pharmacy. The drug was currently on allocation only -whatever that means- from the manufacturer. While we waited for the medicine, Ali and I discussed the medicine and its side effects. Side effects for seizure medication can be intense. We felt a little unsure about giving it to him without having the neurologist see him and prescribing it over the phone. We would be seeing this doctor on Thursday, it was now Saturday. We hadn’t yet had the full EEG report explained and didn’t understand how the focal irritability could affect Sebastian and the possibility for seizures. I posted a note on my CP moms group to ask about other parents’ experience with Trileptal, giving some of Sebastian’s recent history. Although Ali and I were hoping to wait to give the medicine to Sebastian until I spoke with the neurologist again, I received some replies from other moms that got me thinking we should put him on it right away. One stated that her son had twitches which lead to a grand mal seizure before he was medicated.

I decided that I would wait until 7pm Saturday evening to give him the medicine since the medication had to be given out at evenly spaced intervals, twice a day. Just before noon I nursed him to sleep for his nap. He was sleeping in my lap when his right arm and leg started to shake. Soon his body was convulsing and his eyes were rolling back. I started to say his name to try to get him conscious. I held him in my lap, saying his name and crying. I didn’t know what to do. I started to take him downstairs and his eyes were now open, looking at me, but not seeing me. I kept saying his name and soon he broke into a slow smile. I imagined him seeing me from his view, a blubbering mess saying his name to get him back to me. The episode had lasted maybe thirty seconds, but I can’t say really, I wasn’t paying attention to time.

After we met with the neurologist on Thursday, I had a better understanding of the EEG results and what was likely going on in Sebastian’s brain. I understood more about how the medicine worked, why Trileptal was chosen for Sebastian and the difference between common side effects and extreme side effects. The doctor assured me that they wanted to do what was best for Sebastian without changing who he is. I felt so much better after he said this because some of this medicine can do just that. I was happy to know he truly had Sebastian’s best interest in mind as well as working together with us to get there.

Watching Sebastian during his seizure this morning I felt completely helpless. He started to look at me and he tried to smile but his body was still seizing so he was in and out of consciousness. He smiled but then his mouth twitched and his face was contorted and he drooled. This time only his right arm and head were involved. My mom’s husband was with me, as I had been alone the first time. We just talked to Sebastian, trying to get him back to us. There was nothing else I could do. But wait. And wonder. How long would it last?

Sebastian is sleeping peacefully now. But I don’t want to leave the room. His seizures have only happened in the first few minutes of falling asleep. The medicine he’s on makes him very sleepy and a little floppier than usual, making things harder for him to do. It makes him a little sadder too. And constipated. We do lots of ‘I love you’ stomach/colon massages for that. Since he was an infant Sebastian’s right hand has had a little tremor when his first falls asleep. We were always told it was due to the type of CP he has. Now I wonder if it was a little seizure leading up to the ones he’s had recently. The memory of his open eyes not really seeing me and his mouth trying to smile through to twitches and convulsions makes me want to curl up into a big hug with his Papa-Daddy. But for that, I’ll have to wait.

Note: while we were in Australia Sebastian had a short EEG. We were given medicine for him to take back to Egypt. At the time Sebastian was not having seizures, the EEG only showed seizure activity. The medicine given to us had extremely negative side effects (Depakote/Epillum: one being possible liver failure). Due to our location in Cairo, we were not able to access doctors who could monitor Sebastian while on this medicine. I spoke to someone at the international hospital there and she actually advised me to take him to London for care. Because he was not having seizures and the startles he was having didn’t occur with proper sleep, we decided to wait to put him on medication until we could get a longer EEG and have access to doctors who could monitor him on medicine. Now that we are dealing with seizures and medication, I am so thankful we waited. I have been able to either see or speak to Sebastian’s neurologist as we’ve had to make modifications in his medicine. Its difficult to be apart from Ali, but necessary for us to be here so Sebastian can get proper care.

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5 thoughts on “Seizure Saga

  1. Oh Kara, It is so scary and I am so sorry you had to see Seb have a seizure and then more. It really is horrible and the medical stuff that often comes with CP is often worse than the physical issues I think. I am thinking of you and Seb and hope the meds work really really well with little or no side effects for your precious boy. Take care, Love bron xo Cooper thinks Seb looks cool in his eeg getup! lol

  2. Hi Kara,

    Just wanted to jump on here and say that we are also seizure-newbies and delayed medication a month or so until we had a 4 day video EEG that showed us that Fletcher was indeed having regular seizures. Apparently his base-line pattern is so abnormal that the seizures themselves (usually only 1-3 second ones that look like startles… that is, other than the 20+ minute one he had this past mother’s day when he was sick) are hard to see on the EEG.

    Anyway, just wanted to commisserate that we were hesitant to do the meds, too, and honestly, since being on them for about a month now, I am not even so sure what good they are doing, since Fletcher’s seizures are so hard to detect… I have no idea if they are reducing. But, the good news is, the med we are on (Banzel, which is for a really bad seizure disorder, so hopefully you won’t ever need it) hasn’t “changed” Fletcher as far as I can tell, which, like you, was a fear of mine.

  3. Damn…I hate when anyone has to deal with these nasty, nasty seizures. They are our biggest fear with our daughter too.

    Hang in there though, I hope everything gets under control for your sweet, little boy.

  4. Pingback: Frack They’re Back « Free As Trees

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