Type 1 Diabetes Update: Did My Son Have a Seizure?

So, I haven’t really written about my son’s Type 1 Diabetes in a while. It was on purpose, because more of the same business happens — he over carbs his food dose, his blood sugar goes low and then I have to wake up at night and make him drink a juice box. It’s frustrating as he ignores or sleeps through alarms. As he gets older (he’ll be 16 in the fall), I know that this is something that he needs to take responsibility for. I can help him, but when I do, he becomes more passive and stops doing anything for himself. This August, it will be 4 years since he was diagnosed with Type 1 Diabetes, and this update is really about the recent scary incident he had recently (we can talk about teenagers and how they should take more responsibility another time?).
My kid joined Track this fall through his high school (which he finally started attending in person 2x a week this spring). Since he’s only ridden his bike this pandemic, we were thrilled to have something for him to do. And he likes Track. The exercise has been great for him. I dinged up our minivan in early May so we were without the car for over 3 weeks — but no problem, he bikes to school! And then we had him bike to his practice, which was held at a nearby park (way too far to walk, but doable by bike). But then things got scary one Thursday at the end of May and this is the story. This is our Type 1 Diabetes Update: Did My Son Have a Seizure? story.

The Call

We got a call from our doorman that B needed help downstairs. We came down and found him in the laundry room with one of our neighbors, who also has a older child with Type 1 Diabetes. Our neighbor found my kid basically passed out by the bike room, which is next to the laundry room. He seemed to be sleeping. He “woke” him up and realized B was low and gave him juice. My son had refused to wear a medical alert bracelet and we had just bought him a new one that hadn’t gotten to him yet, so if my neighbor hadn’t been there or if he was on the street, they wouldn’t have known he had Type 1 Diabetes and they wouldn’t have given him juice. When I got downstairs with my husband and saw B, he was conscious, but just stared at me – he didn’t say a word. This had happened once before last year. I kept talking to B and splashing water on his face until he finally spoke to me. He had just been staring at me (later on he didn’t remember any of this). Now, his blood sugar only dipped to 60, so this wasn’t really low, but clearly something was happening and. When I saw what his blood sugar was and that he still had IOB (insulin on board his pump), I quickly set his pump to 0% insulin so he wouldn’t go lower.

Taking Him Upstairs

We took him upstairs (yes, he could walk and talk) and made him drink another juice and some water. Finally he really “came back” to us and alert and starving. I was afraid to give him anymore carbs at this point, when someone goes very low and you start giving them carbs, if you give them too many, their blood sugar shoots straight up. So I kept making him all low carb snacks while I thought of our next step. When he was found downstairs, I felt that the way he was acting wasn’t in line with a usual low blood sugar.

Later on we realized that it may have been a seizure, exacerbated by one of the medications he was on and I had started weaning him off of the day before. Also not helping, it was a hot day, he was dehydrated, he had track practice for 2 hours and then biked back home.

We spoke to two of his doctors, the one that prescribed the medication immediately and our endocrinologist (I emailed her that night and she called the next day). We decided to stop the medication that exacerbated this immediately and find out how we can set B’s Insulin pump levels for when he has physical activity. While we weren’t sure if this was a seizure, we felt that the medication that he was on definitely contributed to this episode, because his blood sugar, while low, wasn’t really low enough to cause this on it’s own. But the only thing that was definitely going to tell us was an EEG.

My son seemed fine a couple of hours later and didn’t remember much. But I did and I was scared.

Two weeks later we had an EEG (it was hard to get an appointment). The psychiatrist and endocrinologist both looked at the data and said they didn’t think it was a seizure. Then what happened? This certainly seemed like a seizure. We were told to watch out and see if it happened again (it’s a month and a half later now and it has not happened). If he has another episode like that, I was told to take him to get a blood test around 2-4 hours after and they can see if it really was a seizure.

Image: Image by Pamela Reeves-Barker at Pixabay.