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Sleepless in Florida

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Sleepless in Florida
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To say I am not a morning person is an understatement. Just ask my husband. By the time he’s out of bed, gone for a run, and showered, I’m still pressing the snooze button for the 12th time. Springing out of bed is just not my thing. No matter how much sleep I get, I can nap on command. It’s one of my favorite things to do.

Having our newborn, “Baby Brian,” was a wake-up call for this sleepy momma. Can’t press “snooze” when the alarm is a hungry, 9.5-pound newborn baby. Thanks to my sprightly husband, we were able to work out a routine of sleeping in shifts.

Throughout Brian’s five years of life, we’ve had countless sleep “routines.” Every few months or so, Brian’s sleep routine changes. The changes in sleep routine occur unpredictably whenever Brian (or Lennox-Gastaut syndrome) decides. Any new sleep routine can last a few days, weeks, or months before other routine changes occur. Some changes in routine have been positive and very welcome, while others have compounded the burden of living with LGS.

My husband and I are constantly adapting to new sleep routines and schedules. Brian slept wonderfully as a baby. Even when the seizures first started, his sleep routine wasn’t much different from any other baby. If we stuck him in his crib, he’d generally need little tending to.

Once he outgrew his crib, that’s when the fun began. By this time, Brian was 2 and his seizures had come back. We tried to teach him to sleep in a regular bed. Dad and I alternated nights “sleeping” with Brian in his bed. Brian wakes up frequently to laugh, roll around, and unfortunately, seize. We did this for over a year. Let’s just say there wasn’t much sleep to go around for anyone.

After countless hours scouring the internet for special needs beds and adult cribs (all of which are very expensive), we came across the Privacy Pop Bed Tent. It is much more affordable and provides Brian with a safe, enclosed sleeping space that allows him to sleep independently again.

After almost two years of sleeping apart, Dad and I were happy to share our king bed once again.

The bed tent has not been a perfect solution, however. The first tent Brian had was mesh all around. We figured it would have better ventilation, but Brian eventually ripped through the material. We upgraded to the actual tent, which Brian couldn’t rip through.

Brian is like a little Houdini, quite the escape artist. He soon figured out how to unzip the doors of his tent. Being wakened by the sounds of unzipping, door swinging open, and little footsteps scuttling down the hall not only interrupted our sleep, but posed a risk to Brian, as well.

Brian doesn’t wear a helmet at night, and the thought of him escaping and badly injuring himself without us knowing was enough to keep me awake, even if he was sleeping soundly.

I started to receive morning lectures from my not-so-sprightly husband about my hour-long snooze button routine. We were both going into work running on fumes and needed, yet again, a new solution.

However, in between his escaping antics, Brian also dealt with changing seizure patterns. After enduring seizures throughout the night, he seemed to sleep better, followed by the inevitable morning seizure. He did OK until earlier this year, when his condition worsened and he was having tonic-clonic seizures all night and all day.

Brian slept so much that it became concerning. If we woke up and it was too quiet, we’d run to his bed and check that he was still breathing. Knowing the risk of SUDEP in patients with LGS, I was terrified of what I might walk into.

We changed up some of his medications this spring, and Brian has experienced nice chunks of time seizure-free. He went over a month without seizures, and I expressed my gratitude in my previous column. Sure enough, Brian suffered three tonic-clonic seizures in the following week, shortly after waking up in the morning. Thankfully, they didn’t seem as severe as we’ve previously seen, and Brian rebounded pretty well.

Many people are aware that little sleep is had after a baby is born. Most people don’t plan on their regular sleep routines changing forever, let alone every few months. But this is a ride we have to stay on until the end, always evolving.

Can I press snooze now?


Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.

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