Unraveling My Son's Sleep Disorders

My middle son, R, was a relatively good sleeper until he was 4. A few months after his birthday and the same day I found out I was pregnant with number 3 he began coming into our room every night, wanting to sleep in our bed. Because I was so tired and also because we weren't opposed to having a kid in our bed once in a while we said ok. I mean we had gotten a king sized bed for this reason!

After a few nights of him kicking me all night I realized just how restless a sleeper he was and put out an air mattress on the floor for him to sleep on instead.

He continued to come into our room every night and would fall asleep on the mattress and I assumed that just like our eldest who came into our room every night for 8 months, that he would outgrow it, too. But the weeks turned into months.

He continued to come into our room every night and would fall asleep on the mattress and I assumed that just like our eldest who came into our room every night for 8 months, that he would outgrow it, too. But the weeks turned into months.

As we were preparing for our new baby who would sleep in our room I knew I had to do something to help R learn to sleep in his own room or else the baby would keep him up at night. I didn't really know what to do and nothing we did worked so by the time the baby came he was still sleeping in our room, now on a chaise lounge that converted into a bed.

After the baby was born I slept in our room with him and my husband slept in our middle son's, R's room to help him sleep through the night and stay in bed. But once the baby was 3 months old my husband came back into the bedroom to sleep and so did R.

We knew we were moving to Kansas City in the middle of the summer but it was only January! For the next several months we tried many different things to help encourage R to sleep in his own room all night- and none of it worked. So I hoped that once we moved into a new house it could be a fresh start.

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When we moved into the new house R got to choose his paint color, sheets and blanket. I thought that might help him feel more connected to the room and get him to stay in there all night long. But that did not happen. He continued to come down to our room every night (the layout in our new house is such that the master bedroom in on the main

floor and kids' rooms are upstairs) and now I had two kids to tend to in the night- my youngest at 8 months and my middle at 5.5 years. I was chronically exhausted.

Soon after we moved in I began my Gentle Sleep Coach training and was learning so much. The training was to certify me in working with children ages 0-6 years old.

Seeing as I had a 13 month old and almost 6 year old, neither who slept through the night, I thought what better test subjects than my own children .

When my son was 5 years and 11 months I began using my approach and techniques on him to see if we could get him to sleep in his bedroom all night. And it worked!!!! He no longer came out of his room to come into ours. I was ecstatic. Elated. I felt like superwoman. I was so happy that he was finally sleeping all night in his own room! However I should have known it was too good to be true...shortly after he began waking up anywhere from 4:00-4:45 every morning and no matter what I did he wouldn't learn to sleep later.

Based on what I had learned in my Gentle Sleep Coach training I knew there were things that affected sleep besides behavior and I was beginning to see that my child might have some underlying medical issues ....

Based on what I had learned in my Gentle Sleep Coach training I knew there were things that affected sleep besides behavior and I was beginning to see that my child might have some underlying medical issues ....

In my training as a Gentle Sleep Coach we had a lecture by a Pediatric Pulmonologist to learn about medical sleep disorders that can affect children. We were given two handouts with some red flags and learned a lot about what they meant and how they affected children's sleep.

What are medical sleep disorders?

As a Gentle Sleep Coach we define Medical Sleep Disorders as anything that can not be resolved by addressing the behavior of the child. Not behavior as in good or bad but as in how is the child behaving around sleep times and can they unlearn or learn some new habits that can help them sleep better. I work with families for a month at a time so when I see that after a while the behaviors aren't changing I begin to consider that the child might have a medical sleep disorder.

The two main medical issues are low ferritin (the natural iron stores in our body) which causes Restless Leg Syndrome & Obstructed Sleep Apnea (which presents differently in children than in adults).

Several of these red flags stuck out to me when I was beginning to realize that my child may not just need sleep coaching but also might need medical intervention:

• developmental delay for no specified reason (we will get to this in a different post series)

• history of ear infections

• mouth breather/snorer

• difficulty focusing and attending to tasks

He mentioned that many kids are misdiagnosed with ADD because they seem so unfocused when really it's an overlooked sleep disorder like Restless Leg Syndrome (RLS) or Obstructed Sleep Apnea (OSA) that is causing them to be so overtired that they can't focus or concentrate in an age expected way.

He mentioned that many kids are misdiagnosed with ADD because they seem so unfocused when really it's an overlooked sleep disorder like Restless Leg Syndrome (RLS) or Obstructed Sleep Apnea (OSA) that is causing them to be so overtired that they can't focus or concentrate in an age expected way.

R had already had tubes in his ears by then but he was always the kid in my family that got sick. Runny nose at the drop of a hat, mouth breather, snorer, ear infections after tubes. He was also always in his own world and very distracted. I wasn't entirely sure that was because of sleep issues but it definitely weighed in on my thinking. And the big one- he had some type of a developmental delay since birth for no cognitive or defineable reason.

At his upcoming annual physical I spoke to his pediatrician about my concerns, and thankfully without any protest (which happens) she referred him to our local children's hospital to see a Pulmonologist.

Side Note: Many parents ask me why a pulmonologist and not their regular pediatrician. While some pediatricians are willing to test for ferritin and understand it's affect on sleep, many just look at the hemoglobin level or which iron is a part and incorrectly see the level as within normal. And the tricky part is that it might be in the normal range for health and nutrition so as not to cause anemia but the iron stores (ferritin) need to be at a certain level in order not to cause sleep disturbances, and many pediatricians are not aware of that difference. So I always recommend seeing a pediatric pulmonologist to test the ferritin level and determine next steps for the most accurate support.

When we saw the pediatric pulmonologist she asked for a detailed history of his sleep concerns and agreed to test his ferritin levels. She also suggested a sleep study overnight at the clinic due to his early risings and history or restlessness at night. I wasn't surprised that she wanted to do the sleep study as my husband has mild apnea and medical sleep disorders are genetic.

We scheduled the sleep study at the earliest next available which was in 6 months and took my son to get his blood test for the ferritin. The ferritin level came back low- not alarmigly so, but low enough that she recommened iron supplements. R had borderline anemia when he was 2 and I remember how hard it was to find iron supplements that didn't taste like iron so I was a little worried about how this would go. Thankfully our pediatrician was familiar enough with this area and recommended tasty chewable tablets for my son. I was so happy to finally be able to do something and get my son sleeping better for his mental and physical health!

However, and here's the bad news, iron supplements take about 6 weeks to see a change in sleep and about 6-8 months to get the iron stores back up to normal!!!! Yes, you read that right. So, although I was excited to finally be able to do something I knew we had a long road ahead of us and lots of early mornings until his ferritin was where it should be.

Because of COVID our sleep study was pushed back a while but we were on the cancellation list and happened to get a slot months earlier than I had anticipated we would. I was nervous about how it would go as R has some sensory stuff and I couldn't imagine he would tolerate all the tape and nodes all over his body and face. But let me tell you something....the staff at our sleep clinic was AMAZING! They had a tv he could watch while he was getting all wired and taped up and he had a lollipop, too. It took about 30 minutes to get him all wired up and then the tech explained how it would all work. I put R to bed and laid down on my makeshift bed for the night. It wasn't a great night's sleep for me- shocker- but we go through it and R did awesome!

The sleep techs are not allowed to diagnose anything but he did tell me about his wake ups and showed me what it looked like on the paper scanner. We scheduled our follow-up with the pulmonologist for three weeks later and found out that R had mild Obstructed Sleep Apnea. Not enough to warrant tonsil and adnoid removal but enough to disruprt his sleep quality. *Many kids do need to get their tonsils and adenoids removed and it is a routine procedure from which kids typically recover very smoothly and quickly.

She recommened using a nasal spray every night to open up the nasal cavities and allow some air in and to continue with his iron supplements.

So, after 4 years of dealing with this, where are we now?

R now sleeps until 5:30/5:45 every day and that is the best we get from him but it's so much better than 4:00 so I'll take it. He sleeps through the night and we get his iron tested in a couple months to see where his levels are. He no longer seems tired throughout the day and can focus much better on tasks than before. It's not perfect but given where we started I feel so relieved knowing he is getting the sleep he needs now.

If you struggle with any of these issues or have concerns about your child's sleep and have tried many behavioral sleep changes with no success, talk to your pediatrician and/or a pediatric pulmonologist. And of course, as always, please feel free to reach out to me with any questions or concerns you might have!