LIVING WITH UNCONTROLLED SEIZURES

If you look at our family from the outside, you might not see the emergencies that we deal with daily right now. You might see us cleaning out the garage, you might see one of us leaving the house with Sarah, and you might see us sitting on the front porch enjoying the warm fall weather. Things we all do, nothing out of the ordinary on a beautiful fall day in our neighborhood.

We try to go about our lives as we typically would. We try to not have the seizures stop the normalcy of the day. We try to live with seizures.

What you might not see is that there is a watching eye on Jacob’s face at all times. Joakim and I are like hawks watching Jacob’s face to make sure his eyes don’t start go up to the left side or right up. The first seizures are always a couple of seconds each, then a couple of seconds starts to be many seconds, and then Jacob’s seizures start to cluster. The eyes travel up and down, up and down. Each time the eyes come down, we’re hoping he will come out of the seizures on his own. The hope that we might not have to give Jacob his rescue medication.

In the last 3 weeks, Jacob is not able to break his seizures on his own. The 90+ minutes seizure from a few weekends back is still crystal clear in our memories. If we don’t tackle the seizures right on, it can turn into a seizure that will give us an ambulance ride right to the Emergency Room, something we always try to avoid.

Right now, we have no idea what is causing the increase in Jacob’s seizures and when we will get a handle of them. Each day, I have my cell phone close to me, so I can call Dr. C. or 911 at any time. Rescue medications always close to Jacob. The deep worry, what about if we can’t stop the seizures?

And in the middle of seizures, we try to go on with our lives. This past Friday is no exception. I woke up, and my wish for the day was a seizure-free day. Sarah and I were going to take Jacob to kindergarten, since Sarah had the day off from school. We were all packed up and ready to go, and bang the first seizure hit. Instead of getting everything packed in the car, I had to draw up the first rescue medication of the day.

The seizure stopped, but about half an hour later, the next cluster of seizures started. It was time for Jacob’s new rescue medication. We didn’t know if it would work or not via the g-tube, but this was the time to try it. Luckily, the medication worked great after the disaster the day before when we had to inject it to his cheek (buccul)…It led from a seizure emergency to a choking emergency. Thank God both Gemma and I were there to help our little boy.

When Jacob has uncontrolled seizures and go into status epilepticus, I am on the phone a lot. I am on the phone cancelling appointments. I am on the phone with Dr. C. I am on the phone with the pharmacy. Jacob’s new rescue medication had to be changed to IV formulation after the choking incident. The first step was to find a pharmacy, which even carries this drug. Then the problem that this is considered a medication to only give in the hospital, so neither private insurance or Medicaid wants to pay for it. This is the time when it is hard for a pharmacist to understand our reality. It is Friday afternoon, and if I don’t have good meds on board for the weekend, I can guarantee that we will end up in the hospital over the weekend. There is no other place to go. So, once again, we decided to pay ourselves for Jacob’s medication that his doctor had prescribed for him.

The afternoon was good for Jacob, a little break for all of us from the intense morning. Jacob got to visit with Gemma’s dogs for a bit. A little piece of normal life.

It was also time for a date night for Joakim and I. We had been back and forth with our respite nurse, if we yet again would have to cancel our date night or not. She wanted to give it a try. She is a nurse, and she knows how to give medications. Joakim and I also needed a little break from constantly watching Jacob for seizures.

As we were sitting in the restaurant eating our sushi and chatting about something, my mind was still with Jacob. Our nurse texted me, and said that Jacob had seized again, she had had to execute the 3^rd out of 4 steps on the seizure action plan. Seizure had stopped, but we were now getting closer to a 911 call.

Yesterday was a better day. We gave one scheduled medication early, but we didn’t use any rescue medication. Maybe the increase of one of Jacob’s regular medication had kicked in? Unfortunately, this morning that hope is gone, since we have already given the first rescue medication of the day.

We try to go about our days. We try to make life as normal as we possibly can, but the thing is it is not. We’re dealing with uncontrolled seizures, not knowing what the next hour, the next day will bring. We don’t know how close we are to the Emergency Room at any given time. That is a glimpse of how life is with uncontrolled seizures. A place of unknown that we all would trade for a seizure-free place in a split second. And lastly, our boy needs a break.

Much love, Maria.