Ever since my son had his first and only night time seizure, I’ve been afraid to let him sleep alone. Until a recent trip to Morocco, however, I didn’t know that my problem had a name: “Hypophobia.” While talking with a local Moroccan pediatrician who runs a charitable service in Rabat for children with type 1, she casually mentioned that some of the mothers she works with (few husbands were involved, sadly) still slept in bed with their kids, even though they were ten years and older. “Hypophobia,” she noted.
I immediately realized that I suffer from the same condition.
My son was two and newly diagnosed when he had his first and only night time seizure. He was on NPH at the time, and the night-time peak was a real concern. We used to stuff him with long lasting snacks before he went to sleep, fearful he would go low at 2 or 3 am. The doctors hadn’t advised us to wake up and test him during the night – as we now do, religiously, every night – and we didn’t really understand how things worked.
One night while living in Canada, my son started to cry in fear; luckily, my wife heard him. We rushed into his room, and found him shaking uncontrollably, unable to communicate other than by screaming. After a moment of confusion, we realized this was probably a seizure, something we’d heard about from the medical staff, but had never seen. Although I’d been a combat medic years earlier in the military, my hands were shaking like leaves, and I could barely get the Glucagon loaded and ready to inject. I was utterly terrified, and close to mechanically useless.
I eventually managed to get some of the Glucagon solution into his thigh muscle, and we called both the emergency services and our doctor. Moments later, the house was flooded with Canadian firemen in full firefighting regalia, along with several paramedics. It seemed like an army of uniformed men.
We quickly realized our son was now fine. His blood sugar had come up with the Glucagon, he ate a few snacks, and went back to bed, snuggling the stuffed animal one of the medics had given him. He’s kept it ever since.
From that day onwards, it’s been virtually impossible for me to sleep separately from my boy. My wife sleeps lightly, and would probably hear him from our room if he cried out, but I am a heavy sleeper. So I lie next to my son most nights, and do the 2:00 AM test; my wife takes the 11 pm shift. And if he’s low at 2:00 AM, I typically stay up for hours, testing and retesting until the morning comes.
When will this end? When will I be able to let go, and when will I be willing to let him sleep alone? He’s become dependent on my being in bed with him, naturally, and comes looking for me if I relocate during the night. Obviously, none of this is good, long term. He has to grow up, and I have to learn to let go. But it’s going to be hard; now, thanks to a lovely and remarkably charitable pediatrician in Morocco, I know why.
I have parental hypophobia.
Have you looked into getting a CGM? We just got one for our daughter. She does not wake up when the alarm goes of but I do and I am then able to test her and treat as necessary, An alarm sounds when she is trending high or low. That may help you sleep better at night.