“I just don’t know what to do anymore,” I told my husband over the phone. .. He is just not himself anymore – he is getting upset about little things, he is grumpy all the time, and his behavior is just… off. I don’t know what to do to help him.”
Little did we know that the time that our son’s sleep disorder was being disguised as ADHD or a behavior problem.
Let me start at the beginning…
E is our youngest son, and he was the BEST baby. He slept all night long (which was something I was NOT used to!) 😉 He was happy all of the time.
Fast forward a few years. Our fourth child was born and that was also the exact same day that we learned that our son had Hand, Foot & Mouth disease. It was so bad that his fingernails & toenails came off. In fact, I had to stay in the hospital to keep his baby sister away for a few extra days. (sorry- a lot of information there, but wanted to include that because I often think it is what brought his issues to light).
Over the next few months, E started waking more often. We attributed it to his Hand, Foot & Mouth and just assumed that he was having a hard time getting back to his normal sleep schedule.
Fast forward about five years… he was still waking at night. Still coming into our room every night (around the same time). Still tired in the mornings (and so grumpy when he woke up.)
That wasn’t all.
E had gone from a happy baby to a very unhappy, unpredictable, grumpy, hot-tempered child. He was now VERY quick to lose his temper, quick to get angry, and then quick to feel embarrassed when he realized that he had acted that way.
E was that child that family members joked about as being a “hot head”. He was the one that made us timid to go out anywhere just in case he had a meltdown.
I knew, in my heart, that there had to be a reason that wasn’t just ‘misbehavior’. I knew, from his remorse, that he didn’t like acting this way and I was determined to help him.
Why was he acting this way? What on earth had we done differently? Nothing. We had raised them the same, yet he reacted to things in a completely different way than his older siblings.
I tried everything & nothing changed his behavior:
- no dyes,
- gluten-free diet,
- no processed foods,
- more outside time,
- special vitamins,
- massage therapy,
- more quiet time together talking through what we could do,
- problem-solving strategies,
- earlier bedtimes,
Nothing worked. Even when I had hopes that I saw a difference, it wouldn’t last more than a couple of days.
Someone suggested that maybe he had ADHD or a behavior disorder.
I knew that I could handle whatever was thrown at us, but I had to know WHAT we were dealing with, instead of just guessing. I had to know how to help him.
Finally, when I didn’t know what else to do – I took him to see a therapist. (Note: I am a Child Development Therapist and I had still no idea what to do with him because everything that “normally” worked with my clients wasn’t working with him).
So… we started therapy. On our very first visit to a therapist, she suggested seeing a Neurologist to rule out any issues. She suspected that the Hand, Foot & Mouth were to blame. I had always wondered about it, as well, so I called that day and made an appointment.
That started us on a very long journey to find out the truth.
After many appointments and a sleep study, our doctor called us in for an appointment to discuss the results.
Our son had Central Sleep Apnea, “CSA”, and it was presenting as ADHD because of how it was changing his attitude and behavior.
“Central sleep apnea (CSA) is a pause in breathing during sleep, usually without snoring or gasping. Everyone experiences central apneas occasionally. However, if it occurs too frequently or for long periods of time, it can cause a decrease in the oxygen levels in the body and disrupt sleep.” ~Children’s Colorado.org
This was not SLEEP apnea as we knew it. It was not a blockage. This was CENTRAL sleep apnea, caused by his brain telling him that he was drowning, pretty much, and making him get out of his REM sleep to ‘wake up and take a breath’.
What the doctor told us next explained the grumpiness, moodiness, temper tantrums, etc… in 11 little words:
“He is waking up 8 times every hour, all night long.”
Often times, one of these wake-ups would lead to a 1-2 hour time of being awake.
Our poor sweet baby boy was barely sleeping.
Can you imagine how cranky that would make you? He was chronically tired. By the time bedtime rolled around, he was exhausted and fell asleep within minutes.
So… we looked into solutions.
He had many tests done because often times central sleep apnea is linked to a heart problem. Everything else came back normal and now we just had to help him. We started him on a CPAP machine to help him. It took months to get it right, but once we did, he was back. Our sweet, happy, selfless, caring E was back.
That was three years ago. To say that his life changed is an understatement. He went from being the one that was unpredictable to being a child that you could rely on. He went from one that you hated to disappoint, because you knew how we would react, to being a child who could take things with a grain of salt. Don’t’ get me wrong… he still had to unlearn the behaviors that he was used to (five years of “losing it” about things can change the way you handle things), but now he had the sleep that he needed and he could react in a calm way.
Then, last week, I was online and read a Facebook post written by another mother… and that post went viral. It was like I had written it myself… Her name was Melody Yazdani and she was another mother of four.
Melody says in her post “Please share this” because her desire to help other mothers is so great. I reached out to Melody to let her know that I was writing this post and I couldn’t agree more. If only others knew that sleep disorders just don’t look like we think they do… hopefully this post will get the message out there.
“Parents, prepare yourself for some all caps yelling because this is going to change some lives…
All parents. If you have a child, I’m going to tell you something you need to know that you have probably never heard. And please share this. There is a huge red flag in the picture I am sharing with this story. Do you see it?
CHILDREN SHOULD NOT BREATHE THROUGH THEIR MOUTHS. Not while awake, not while asleep. Never.
If your child:
- falls asleep immediately after their head hits the pillow,
- grinds their teeth,
- wakes up in the night,
- has night time accidents or daytime accidents,
- has impulse control issues,
- is hard to understand when speaking,
- has under eye circles
- as crooked teeth or a misaligned bite,
- wakes up insanely early,
- is irritable during the day,
- has a bad appetite,
Let me back it up to last year: My son, Kian, now age 8, determined, intelligent, feisty, and extremely active. He started school, no problems in Kindergarten. First grade rolled around, and we started getting behavior reports. “Kian pushed so and so” “Kian is having a hard time controlling his body”
Parent teacher conferences, new reward system in place, and it seems to improve. But at home, it did anything but. When Kian gets angry, he gets ANGRY. He gets fixated on little things (there is a hair in the shower, it’s gross! I can’t shower in there! *melt down commences*), his fuse gets shorter and shorter, and he’s a picky eater who barely eats.
Second grade rolls around, and oh boy. While other kids are outgrowing their tantrums, Kian’s intensify and turn into daily spectacles, triggered by the smallest thing. The behavior reports from school start rolling in. “Kian is pushing” “Kian can’t control his impulses” “Kian is having a hard time staying in his seat” and it going on and on. Almost daily. And I’m mortified. Every morning it’s tantrum after tantrum before we even get out of bed.
Hitting, and throwing things, and the screaming. All the screaming. Starting at 5AM every morning.
We were at a loss – how did he become this way, what could be have done differently?
Kian starts seeing a therapist, recommended by his pediatrician. The therapist starts working with him and eventually recommends ADHD testing. Meanwhile, in the background, Kian has a persistent cough that just won’t go away, so we are also seeing a pulmonologist, and, against the advice of the pulmonologist, an allergist.
This will become relevant in a moment. Each doctor is recommending more and more medications – 2 inhalers for the cough, an antibiotic (4 different rounds) for the postnasal drip, a steroid, and it goes on and on. The therapist is dancing around ADHD, pushing us in that direction.
At a cleaning, Kian’s dentist makes an offhand comment about his teeth – they were ground almost half way down, he’s grinding his teeth at night.
And then lightening struck, right at the perfect time. I stumbled upon an article that changed our life. The article, I’ve included at the bottom of the post, was about the connection between ADHD, sleep disordered breathing, and mouth breathing. Every word in this article sounded like Kian.
This led me down a rabbit hole of research (the majority of which was done right in our back yard at the National Institute of Health) where I learned the following: Mouth breathing is NOT NORMAL and has long term consequences for health.
Sleep deprivation in children and ADHD exhibit the same symptoms.
The EXACT SAME SYMPTOMS.
⇒ Studies have been done (thanks, NIH) where they took medicated ADHD kids, fixed the sleep disordered breathing, and within 6 months 70% of the children had seen a resolution in symptoms and were no longer medicated.
As in, their ‘ADHD’ was cured. Because it wasn’t ADHD.
In 70% of children. Let that sink in.
This means that 70% of those children had been misdiagnosed with ADHD when they actually had a treatable sleep disorder.
Stimulants – Of course, they work, until they don’t. If you are sleep deprived, taking a stimulant will, of course, help you focus and feel ‘normal.’ But the brain is never fully resting – and hence the side effects
- sleep problems (insomnia),
- stomach pain,
- loss of appetite,
- weight loss,
- suicidal ideation’
Imagine yourself with, let’s say, three days of sleep deprivation. How? Multiply that times 100.
Now throw a stimulant in the mix.
How do you think you’ll feel once you start coming down from that?
The list goes on and on (I have copied some of the research links below).
Our story has a happy ending.
After a visit to an ENT and a sleep study he was diagnosed with sleep apnea and sinusitis. He got exactly 0 minutes of REM sleep during the first study, and oxygen saturation in the low 80%, and his sinuses were 90% blocked. We had no idea that Kian had a headache daily, but it was just his normal so he never thought to tell us. Kian had his tonsils and adenoids removed and the change was immediate.
He could breathe through his nose as he came out of surgery, where he couldn’t when they wheeled him in.
We have seen a complete 180 in behavior.
No more angry tantrums, no more fixation on little OCD things, it’s been an enormous change. And we haven’t even finished the second step – fixing his jaw and tongue issues that developed during the course of undiagnosed sleep apnea.
Our followup sleep study?
360 minutes of REM sleep, and oxygen saturation above the minimum threshold. No behavior reports in school. His appetite has exploded, he’s no longer a picky eater, and he had a huge growth spurt 2 weeks after the surgery.
He still has mild sleep apnea, but the frequency in the night was cut in half, and the duration of each episode was cut in half. If we see this much of a change now, I can only imagine how much it will improve once we cross the finish line.
Here’s why I am sharing:
No one, in my 12 years of parenting, ever told me any of this.
All the signs were there, right in front of our eyes, and I had no clue.
Kian’s pediatrician, who we loved and trusted, never said a word. The therapist had no clue, the pulmonologist, the allergist, even the ENT and sleep doctor didn’t believe me when I insisted he is seen for this invisible health issue. Not during any of our regular appointments, or during any of our sick child appointments.
And not until we have tangible proof with sleep study results and sinus imaging did anyone believe. I had to find this, diagnose this, and push for treatment myself. And thank God I did.
If any of this is raising red flags in your mind, if this sounds like your child, if your child has been diagnosed with ADHD, please see an ENT and get a sleep study. It may just change your life.
(She also writes that while she is grateful for the reach of her post, she can not help to diagnose any children, but that she made an appointment directly, without a referral. We did the same.)
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