Would a Safety Bed Help with SYNGAP Sleep Issues?

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Hans is a parent to a son with SYNGAP1 deficiency and since March 2017, an advocate for advancing the care and research for this rare disease. We are grateful to Hans for his work on the SRF Board of Directors & leading the committee of parent Scientists & Clinicians.

As a new member of the SynGAP1 parent club, one of the first things I asked another more experienced parent was “How are the nights?” The parent explained that their little darling slept on a mattress on the floor, got up in the middle of the night, and played on their own. “I think they can see in the dark.” It was incredibly memorable and made planning  sleep a priority for me and my family. One of the keys to good sleep is something called sleep hygiene. These are the habits that promote or sabotage good sleep. Do you drink espresso after dinner? Good luck getting sleep. Do you watch TV from bed? Good luck staying asleep. In short, our brains are easily tricked into forgetting that a bed is where you sleep at night. As a medical professional myself, I often explain to patients that bad sleep hygiene includes thoughts such as, “Hey, I’m in bed. I wonder what’s on TV?” Or “Where is my phone? I need a dose of Twitter.” In the same way, I did not want my SynGAPian to be too busy “thinking” in the middle of the night, “Where’s my swing? Where’s the TV? Where is everybody? I gotta find everything and everyone.”

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That’s where a safety bed comes in! As soon as my little guy could get close to climbing out of his crib, we recognized the need to start the process of researching safety bed options. We liked the firm KayserBetten because of the range of beds they manufacture and offer online. They are familiar with the insurance hurdles and do the legwork for you to ensure a smooth process. We provided them with some basic information and a medical record release and they handled the rest.

In the end it was paid for by our insurance since it was a safety issue. Once our little one showed signs of being able to “escape” his room — all kinds of worries kept us up at night — the fear of our child falling down the stairs or leaving the house (once old enough), or even turning on the stove.

Consequently, insurance companies want families to demonstrate that there is a medical necessity and that the purchase of the bed (or any other equipment, for that matter) is necessary to keep the child or patient safe at night and that the current set-up fails to do so. If you decided to select a safety bed manufacturer that does not help you navigate the insurance maze – make sure to submit a script from your doctor and a Letter of Medical Necessity that includes the following:

  1. Description of your child’s Syngap1 diagnosis and all other diagnoses (e.g. epilepsy, low-muscle tone, Intellectual Disability)
  2. Explanation of why the current bed does not sufficiently keep your child safe (and instead poses a safety risk)
  3. Without making mention of the exact safety bed model you are interested in – provide a description of all features you need with a detailed justification (e.g. “child needs full rails to keep from falling out during seizures)

Note: For more information on how to get insurance to cover the cost read this article.              

For us, securing insurance coverage did take some time but it was overall a smooth process. We were told that insurance does, at times, deny coverage but that the appeals process is well worth it (since they mostly approve after one round of denial). So don’t feel discouraged if you are denied coverage on the first try!

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It’s no fun closing the gates on my little guy every night but it builds a habit that gets him and the rest of the family a good night’s sleep and in the long run, preserves our sanity for the marathon of parenting a special needs child.

Now it’s been 18 months and most nights are an 8:30pm bedtime and 6am wake up call. He does stir in the night but usually goes right back down. I would like to think that’s because his brain says, “Well, it’s dark, I’m in my bed so I guess I’ll just go right back to sleep. After all, I don’t do anything else at this place and time.”