Epilepsy and Us: In A Nutshell

 

The oldest boy had just turned one when he started having what we think were his first seizures. He started with “sad faces”, a few times a day where he would scrunch up his face, turn red and form tears in his eyes for 5-10 seconds, and then it would stop. He was starting to cut his one year molars, so we assumed that the faces were an expression of pain. After a few weeks they slowly developed into full complex partial seizures, clusters of 6 to 8 in the span of about an hour. During these he would slow down and look a bit scared, then he’d fall over with his arms and legs out in front of him shaking, and his face and head would turn bright red. He would have his chin tucked down to his chest and be drooling bubbles. These would last about a minute, and then we had to be careful for the next 2 or so minutes not to provide any kind of surprising stimulation, like a back rub or scratch, or he’d go back into the fit for a few seconds and would take more time to fully relax. 

For the first few weeks with the sad faces, he didn’t seem to be in any kind of distress. Thinking he was teething, we monitored his temperature, moods, energy level, eating and drinking, and willingness to socialize. Especially because he is such a social kid, if something was wrong, it would show. For the first 2-3 weeks, those things didn’t change. My husband took him for his one year immunizations during that time and asked the public health nurse what she thought. No red flags were raised, but it was lasting too long so I booked a doctor's appointment to make sure everything was in fact ok. Not actually seeing an episode in the appointment, the doctor said it didn’t immediately sound like a normal seizure but she couldn’t rule it out. She didn’t say it was worth going to the ER right away because he didn’t appear to be harmed or in distress, but did refer us to a pediatrician to look into it. 

We went for our first appointment and were admitted to hospital before we left the exam room. Thank goodness. We had just started seeing the full rigid body seizures and my momma’s brain was starting to panic. At about 8:00 that evening he was given Ativan as a rescue medication, meant to surprise his brain out of having more seizures for a few hours. It did not work. He started having 10-15 second seizures every 2 minutes, which was so much worse! The doctors were a bit baffled, and after about an hour they decided to give him Dilantin. Dilantin is a very strong drug that can also be quite damaging if used regularly, but the doctors wanted to buy some time and the boy needed a break, so once was probably fine. That did work, thank goodness, but then we were told that it worked so well partially because he had accidentally been given too much. So is once still fine?? Accidents like that are so very rare, but our trust took a hit. That accident locked us in the hospital for the whole week as we waited for our doped up, high as a kite, ‘who knows which way is up?’ one year old to come back down and settle into a medication plan. If our hearts weren’t broken before, they were now.

My husband was an absolute rock star through this ride. He was at every doctor consultation, and discussed every bit of information, test and decision that became our son’s package deal. When we were admitted, we asked for the doctors estimated time table for the boys tests and screens, and with that my rock star man went home, cooked a couple meals and packaged them, made plans for the dog, and sorted out his work schedule. He did the full week working shortened days as much as possible (didn’t have the option for time off at that point due to the nature of his work but he sure tried), and getting up at 4:00am to bring me new clothes and a coffee. He would sit with the boy so I could try and nod off undisturbed for an hour or so before he had to go to work. After work he’d be right back at the hospital at the end of his shift so I could go get food or shower, and then we’d talk about everything the doctors said and wanted to do. He’d stay until 10:30pm or later every night, to make sure nothing important was about to happen (because sometimes something would), and then he’d go home and start the whole thing over again. He did all this without being asked, without complaining, and with a smile as often as he could reasonably manage. I am so proud and grateful to have this man. 

The boy started on Clobazam in the hospital, this was a twice a day pill that we had to cut down to the right dose, and then crush and put in a spoon of applesauce or fruit pouch. It’s a mild enough drug that usually works for kids with childhood epilepsy. It was effective for about a week, and then gradually over the next month the seizures came back. In that time we had our consult appointment with BC Children’s Hospital Neurology and met our doctors and one of our contact nurses, and got instructions for continuing care. On top of the standard seizure care and medication, the big rule was if there was a seizure for more than 3 minutes or a cluster of seizures more than 3 in a half hour, we were to administer a new rescue medication, Midazolam, on top of his regular meds and get him back to the ER. By the end of the month, we were back at the ER, and admitted again. 

It was decided we would wean off the Clobazam and start Keppra, a relatively nice drug with few long term side effects. Slowly over a couple weeks his doctor increased the Keppra dosage until we couldn’t anymore, and still saw seizures. We added Tegretol and after about a week and a half, the seizures were mostly gone!  We were now giving medication 5 times a day, but who cares! The drugs were finally helping him!

This whole ordeal lasted about 4 months, and then we saw our last recognizable seizure in early May of the great 2020. Moving forward, the plan is to wait and see. If he can hold off the seizures, we don’t have to increase his dosage to match his weight as he grows. If he can do that for 2 years, then we can slowly start weaning him off the meds over the following 2 years. This all assumes that the seizures don’t ever start again. 

We know there are a lot of kids and families that have much harder situations to deal with than us. We know we are blessed with a story that, for the moment at least, appears to have a pretty bright light at the end of a reasonably short tunnel. But we also know that this kind of thing isn’t discussed very much, and we were unprepared and felt so alone. We also know that there are families that will experience this after us and may feel the same as we did. We want to do our part to inform everyone we can on how friends and family can be supportive to those of us with kids that have extra things going on. And as much as we can, we want to be present for those families that will have their own story like this so they know they’re not alone. Parenthood, especially this subgrouping of parenthood, is a ‘pay it forward’ community. We aren’t the only ones who take care of and love our kids.