Consider medical interventions
This may seem like "captain obvious," but I've been shocked that some other parents have had push-back from medical teams on actual medications. For Karter, muscle spasms, anxiety, seizures, and positioning are largely to blame for his sleep difficulties. I will tackle the latter next, but it is important to know that sometimes it takes medication for some of the other symptoms that are contributing. There are all sorts of medications that can help with tight muscles or anxiety that may be worth trying. Of course seizures are a whole 'nother topic, but there are some seizure medications that have side effects of sleep. Tweaking the timing of these medications can help improve sleep, and in my opinion, is worth exploring.
There are also medications for insomnia. And yes, they ARE FOR CHILDREN. We work closely with a sleep medicine doctor, and after a couple years of trying the "typical" sleep tricks, we succumbed to trying medication for insomnia. The reality is, you need a healthy brain to regulate sleep. Thus, when your brain is significantly injured, sleep is inevitably going to be difficult.
At first I was skeptical of trying these. I felt guilty for "medicating" my child. However, after more research and thought, I've realized how much sleep matters to everyone's health. For Karter, his seizure threshold is lowered when he is tired. Everyone is healthier with good sleep. We use medications for seizures, muscle tone, and pain- so why not sleep, too? It's something to seriously consider. It certainly helped us.
Positioning Supports
I have realized over time that much of Karter's sleep challenges is related to positioning. He doesn't have the motor control or strength to roll or reposition himself . He also needs to be upright due to his reflux and respiratory challenges. Even with medications, sometimes he gets uncomfortable and/or needs to be re-positioned. Sometimes no matter what you have, your child will need help getting into a new position. But there are things out there than can help them stay comfortable for longer stretches. Here are some of the supports we have tried to help improve his sleep by improving his sleep position.
1. Versaform Pillow
The first thing we tried was a Versaform pillow. Tumbleform makes this product. Essentially it is a pillow that can form to your child, and serve as a way to keep them supported and in position. We used to put this on a wedge, and shape the pillow in a way that provided him support to stay elevated. Insurance and/or medical assistance may cover this.
2. Positioning pillows
No matter what you have your child sleeping in, he/she may simply need a few positioning pillows to stay comfortable and safe. After Karter's hip surgery, our local hospital sent us home with these: Molnlycke Z-flo Fluid Positioners. We use them for all sorts of things, but especially sleep! They come in all sorts of sizes. You may want to ask your PM&R or primary care physician about these.
3. ComfyLift Mattress
The Comfy Lift Mattress is a mattress that can fit in any toddler bedframe (or twin, depending on the size). It is designed to keep kids who have reflux or respiratory needs elevated. Since Karter moves his legs frequently, this would cause him to slide down the incline. Thus, we had to use a combination of positioning pillows and this mattress.
Still, it worked to keep him elevated and comfortable. Insurance and/or medical assistance may cover this.
4. Symmetrikit Sleep System
After requesting a bed evaluation at our local hospital, the team recommended Symmetrikit Sleep System. This system comes with all sorts of positioning supports that will be custom picked for your child's unique needs. It is meant to be put on any bed, so in theory it can travel. Once the positioners are in place, it's covered with a pad for comfort and shape. It's secured by a cover sheet that is washable. See our demo video below!