When Normal Kid Sleep Turns To Scary
Last month, I decided to share our journey with my daughter’s sleep issues, how we took action to get some answers, and ultimately the process and behind the scenes of our sleep study.
I don’t think we’ve ever got so many questions about something we’ve shared. Apparently sleep is super important to mamas (who knew!) and from the sounds of it, a lot of us aren’t getting enough of it. I never realized how many households were struggling with sleep related issues – waking in the middle of the night, night terrors, breathing problems, snoring, etc.
All things big and small can make any parent worry, but it can feel like you’re the only one going through it because no one’s talking about it. I think somewhere we decided to just accept that sleep issues were normal. “I slept in my parent’s bed,” “I know I woke up at night,” were all things I said to myself. But ultimately I decided to trust my gut, that true mama intuition that told me something was not right, this was not normal. So we took action to rule things out and get some answers.
After so many comments and questions when we shared our experiences on social media, I thought a blog post would be helpful to you mamas who might be walking a similar journey and considering taking next steps with an ENT and/or sleep study.
Here’s what I’ll say, I’m not an expert, but the routes we took worked for us. I hope they’ll work for you, as well.
Back Story
My daughter has never been a great sleeper. Not a horrible one, but not a great one. Things took a worse turn when we switched her from a crib to a toddler bet as just 2.5 and right when we brought her new baby brother home from the hospital. Yeah. We know now, not too many changes at once, but hey, ya live and ya learn, right? Although this was a harder transition than anticipated, we rolled with it, stayed firm, and only had a few bad nights a month.
Something changed when she turned 4. Sleep anxiety and fears about going to sleep and sleeping on her own began to creep in. Traveling and being out of our element and routine only made this worse and before we knew it she was on a mattress on the floor of our room. For 6 months. You heard it…6 months. Ideal for my marriage and own optimal sleep? No. A necessity for us to get some form of sound sleep to be able to work and mom and function during the day? Yes.
It was December before we got her back in her own bed with the help of Santa telling her big girls sleep in their own beds and that they get extra presents, as well as a beautiful big-girl princess bed and updated room to make her feel special. We worked with an amazing sleep consultant, a friend of mine from New York, who helped us lay the foundation, stick to our rules, and get her to stay in her bed. It was a pretty good few months…and then she turned five. The months leading up to her summer birthday it was like a switch and she was back to bad sleep habits, only this time things grew more concerning.
All summer we dealt with what we felt were night terrors, but she also had every symptom of some form of sleep apnea, except for the continuous snoring or gasping for air. Every night she’d scream out, cry and I’d come in to a child who was drenched in sweat, confused, and did not want to go back to sleep alone. So into our bed she went. Or we’d climb into hers. It was an endless cycle, almost like clock work and we were trying everything: essential oils, earlier bedtimes, no tv before bed, sound machine, you name it. More concerning that her behavior at night was how she acted in the morning. Her little eyes were puffy and dark and she had big emotion, over the smallest of things. I’d look at her in the morning and just think ‘my goodness, child, you look exhausted.’ She just wasn’t herself. So I decided to follow my mama gut. I made an appointment with an ENT.
Next Step: ENT
After doing some research and talking to friends, we decided the next logical step would be getting in to see an ENT. In any kind of apnea diagnosis, they first want to take a look at their tonsils and adenoids. We got an appointment fairly quick and as soon as the doctor came in, he looked at her tired little eyes and you could tell he felt for her. He said “do her eyes always look like that.” I said yes, that’s why we’re here. I felt reassurance and sympathy from him, which felt comforting. We were in the right place.
He examined her, asked us both specific questions about her sleep, and made his recommendation for a sleep study. He said upon examination that her tonsils and adenoids looked normal, but what we were experiencing at home was not normal sleep behavior. At one point I asked if it would make more sense to start with a sleep evaluation, which isn’t as in depth as a sleep study, but he urged us to go ahead with the study. After talking it over with my husband, we came to the agreement that even if the results showed all clear, our piece of mind and knowing she was OK would make it all worth it. So we proceeded to schedule the sleep study.
Scheduling & Preparation
Scheduling the sleep study was not something we were prepared for. We called the day of our ENT appointment and the sweet woman on the whole said they didn’t have an opening until early November and at the time it was early August. So if it’s one piece of advice I can give, it’s to either be prepared to be patient or call around to other hospitals that do pediatric sleep studies. Calling around didn’t help us, as everyone was booked far in advance and we knew we really wanted to be at Memorial Hermann in Memorial City based on our doctor’s recommendation and their incredible reputation in this specific area.
So, we decided to wait. Literally the next day, it was a Friday, and I’m sitting in the H-E-B curbside line waiting for groceries at 4pm and I get a call from the hospital- they had a last minute cancelation and wanted to see if we could make it in the evening by 8pm. Took some shuffling, but our answer was YES. When things aren’t right with your child, having to wait is literally torture. We wanted to get in before school started and just have some answers.
My other big piece of advice for a mama and kiddo going through this, specifically if the child is old enough to understand, is to be super open and communicate. I think preparing our daughter, explaining what exactly was going to happen and why we were doing it really helped to ease any anxieties. We talked and communicated a lot, watched a lot of informational videos on Youtube, and just talked, talked, talked. One of our favorite videos to help prepare her, was this one. The little girl narrates the video and walks the viewer through what to expect, from a kid’s perspective. She was so prepared by the time we got that call that it was like an adventure to her. And I think in some small way she wanted to figure out what was going on with her, too! She’s five and wise for her age, so being overly communicative with her throughout the process was important for us.
Other than having to be at the hospital at a certain time and making sure your kiddo is bathed and ready for bed upon arrival, there were really no other steps. We did have to check with insurance to see if our deductible had been met and what out of pocket costs would ensure, but nothing major.
The Study
Directions on how to get to the hospital, parking garage, floor, etc. was made super easy on us by the nurse who booked us. I knew to bring her clean and ready for bed and that we’d both be sleeping in the same room. Harper had her bag packed and she was ready. In one of the videos we watched to prepare her, she saw that a little girl got to play in the toy room before her sleep study to make her more comfortable with her surroundings and the staff. So as soon as we were greeted by our sweet nurse Gloria, Harper asked is she could play. The entire staff, everyone was so sweet and welcoming to us. Harper got to play in the toy room while I filled out some paperwork. For being at a hospital, we sure didn’t feel like it.
As the clock got closer to Harper’s normal bedtime, we wrapped up the playing and headed in to her room. The entire wing/floor is decorated for kids, so it’s welcoming and colorful. When we got into our room, Gloria asked what Harper’s favorite color was. Pink, of course. Gloria returned with a beautiful, handmade blanket. A group of women, based out of Katy, TX of all places, make these blankets for the kids and donate them so they’ll have some comfort while doing their sleep study. That blanket made us feel all the more comfortable.
Harper got to watch Peppe Pig while Gloria started hooking her up to everything. A lot of wires and stickies, but Gloria explained everything to Harper as she was doing it. I think Gloria being so kind and knowing her mama was right next to her, made the hook up process a breeze. I was most nervous for this part and I’m certain if you have a younger kiddo it could be a bit more taxing and overwhelming, but Harper was a champ.
As soon as Harper was all hooked up, Gloria made sure we had everything we needed and sent us off to bed! I changed into my pajamas and by the time I slipped into the bed next to hers, she was out.
That Night
Now if you were to ask me the number one thing I was warned about with this sleep study it was the horrible night sleep we would both get. The rooms were freezing, the kid kept waking up, mom couldn’t relax…you name it, I was prepared for a pretty hellacious night for us. To my surprise, we got the exact opposite! I didn’t know whether to be happy or a little annoyed that she slept better at that dang hospital than she did at home, but nonetheless I was grateful the night went smoothly. Even I slept like a rock!
Harper did wake one time and started to mess with her wiring in her nose- that’s the hookup Gloria warned would annoy her the most. Because the team watches on a monitor, Gloria was able to speak over the speak system in our room and tell Harper to lay back down and not to mess with her wires. Harper complied, Gloria came to make sure nothing got unplugged, and we were back to sleep before I knew it.
They usually come to wake the patients at 5am, but because we looked so peaceful and had a good night, sweet Gloria let us sleep until 6! When she came in to start the unhooking process, it felt like we’d only been there a few hours. Harper and I both were a little dazed and disoriented, but were happy to be heading out of the hospital with the study behind us. I just kept telling her how proud of her I was and Gloria said she was one of her best, most cooperative patients to date.
All there was left to do at this point was wait. The nurses can’t tell you anything, even if they saw something that night. They let us know our doctor would be in touch with the results in 5-7 business days. Now, we wait.
The Results
We got the call that results were in about a week after her study. They explained that the results were in, but we needed to come back in for an appointment to read through all the findings. This was hard. To know the results were in, but couldn’t get an appointment until the next week was not easy. This is where I pushed back a bit. I got the nurse to tell me that if they found anything alarming, they’d squeeze me in right away or talk to me over the phone. Because neither of these were happening, we felt a huge sigh of relief that everything was likely OK, which made waiting for the appointment a bit easier.
The week of our appointment rolled around and my husband and I were able to attend together while Harper was in school. We got to sit with the doctor, read through the report, and most importantly, ask as many questions as we wanted. Ultimately, the results came back showing there was no sleep apnea- obstructed or neurological. At no point in the study did she stop breathing, which was the biggest relief for us to hear.
But with relief, came more questions. If it’s not sleep apnea, what was going on? We got a look at other things, as well- they track their REM cycle as well as their movements to check for things like restless leg syndrome. Both of these were normal, as well. Again, relief..but also more questions. We sat with the doctor for another 10 minutes or so after reading through the results and findings and he concluded that she’s likely suffering from a form of night terrors. He said next steps would be to see a pediatric sleep specialist or a pediatric neurologist if we wanted to look into her sleep issues further.
We left with piece of mind and like we had the answers we were seeking. Did the sleep study completely answer all our questions? No. But it truly helped ease our minds during a very confusing and often scary time. It’s so hard to know what’s part of normal development and what needs your attention. The sleep study is something we’ll never regret. Now we know. And as a parent, knowledge is power.
Plan Of Action
We left with the ENT’s recommendation to see a pediatric sleep specialist in order to zero in on what was going on with Harper’s sleep. We’ve checked in to a few, but essentially decided to take action in small ways first. We decided to take a deeper look at things like routine, diet, and exposure to technology. What I love most about moms is, we spring into action when we need to. I’ve tried to really immerse myself into anything I can get my hands on about how to get kids to sleep better. Things like a weighted blanket, eliminating food dyes from diet, no sugar in the evenings, and getting on a more strict schedule are all things we’re continuing to try.
I’m fairly confident, after more research, that Harper suffers from Parasomnias. According to sleepeducation.org, Parasomnias are sleep disorders that involve undesirable events and experiences. They occur during sleep, as you fall asleep or as you wake up. These sleep-related behaviors are very common in children and for the most part are a normal part of childhood. This can begin to appear as a young child’s brain and body continue to grow and develop. This type of sleep problem often occurs in children who are healthy and happy. In the vast majority of children these sleep-related behaviors tend to go away without treatment as the child enters the teen years. These behaviors are considered a disorder when they occur repeatedly over more than three months and disrupt the lives of the child and/or the family.
Parasomnias often cause a child to appear confused or afraid. In many cases, these episodes disturb the parent or sibling much more than the child. Usually the child never becomes completely awake. He or she often has no memory of the event when morning comes.
You can read more about this here.
Update
I’m happy to report that things are better. Harper still wakes in the night and often ends up in our bed. But the night sweats, screaming out, crying, confusion…most of that is rare. I don’t know if it’s because of the new Kindergarten schedule or that the things we’ve worked on are helping, but either way we’re happy things are better. I still have to lay with her until she falls asleep. I think a lot of her issues center around sleep anxiety- she doesn’t like to wake up and be alone. I remember being her age and sneaking into my parent’s room most nights, as well. How things are now, we can handle. And I’ll never know why things were as bad as they were. All we can do is move forward and continue to promote healthy sleep habits in our home. All we can do as moms is our best, right? I’m learning right along with all of you and strive to do the best, be the best for my kiddos. I look at this sleep debacle as another stone to kick down the road of motherhood. No one said it was an easy path to raising these babies. And while this entire situation has been stressful on us all, I’m ultimately so happy we sprung into action to get help and answers. It’s all about educating yourself and making sure to utilize the resources you have to work towards change. That’s exactly what we did with this sleep study- we armed ourselves with knowledge.
If our story sounds like yours, please feel free to message us- we’d love to help, would love to chat. We also saved a lot of this info on our IG story highlight board called Mom Tribe.
