Thursday, November 1, 2012

Sleep Apnea & "ADHD"

Back in late September Evie had a sleep study. I posted pics on facebook of her hooked up to all the monitors, but per my "try to keep pics of Evie off the public blog" policy I won't post them here. It was hard and traumatic for us all, but ultimately helpful. The results came back and shocked us.

 No restless legs syndrome, no periodic limb movement, nothing. She did show obstructive sleep apnea.

WHAT?! She does not snore. I repeat, the kid does not snore. We'd ruled out sleep apnea because she's a really quiet sleeper. But there it was, her not breathing on the monitors. At one point she stopped breathing for 13 seconds. And then she woke up. Poor thing.

 So we referred to an ENT who rule out her tonsils & adenoids as the obstruction culprits. That was a bummer because that is the most common (and quick and easy and cheap) fix. On Monday they'll put our little toddler under anesthesia and scope her entire airway to determine what exactly the cause of the obstruction could be. I'm really nervous about it. The cost of all of this weighs on my mind, but we'll really pay anything to help her (and us) get the rest. I worry most about my toddler being under anesthesia and most likely having surgery once we figure out the issue.

An interesting fact about Evie's sleep disorder is how many people think it is just an inconvenience or frustration for us. People say things like "oh yeah, my second was a terrible sleeper" or "yeah my six week old gets up 3 or 4 times a night, it's brutal." None of these comments are meant harshly, in fact they are usually meant out of sympathy or to empathize: "I go crazy when I don't get my sleep." But Evie's sleep issues are so much worse than typical and they are so much more than just inconvenient or frustrating.

Experts will tell you that you should be as worried about your child not getting enough sleep as you are about them not getting adequate nutrition. Sleep for Evie is not just our free time from her to decompress or get stuff done for work and school, sleep is the time when the brain is active, restoring, working through things. It is crucial. And her not getting it has made me stressed because not only am I am sleep deprived and can't get things done, but I am also worried about her mental and physical development.

In my reading on sleep apnea I have come across some surprising facts. Of course we all know that we, and children, are more irritable and difficult to be around when we are sleep deprived (my apologies to my friends and family for the past 2.5 years). But actually, it is more than irritability. Doctors now suspect that a high proportion of children diagnosed with ADHD actually have a sleep disorder, like sleep apnea. There's a lot of research going on about it right now, but here's a NYT article that kind of summarizes their concerns.

Basically a high proportion of kids who have been diagnosed with ADHD actually have sleep disorders (like sleep apnea). And the drugs they use to treat ADHD can actually cause insomnia, making it worse. Of course, some kids do just have ADHD and the drugs really help. But for some children, their hyperactivity goes away when they are treated for sleep apnea (tonsils/adenoids removed, get a cpap, treat allergies so they can breathe better, etc...). Is that mind blowing for you? It is for me.

Anyway, I thought I'd post about this because I know a lot of people have children with ADHD and may not have considered sleep apnea. I mean when I think of sleep apnea I think of overweight adults who can lose weight and it goes away. I do not think of skinny two year olds who don't snore. Some kids with apnea even appear to sleep through the night well, but they wake tired and not well rested because they don't get enough REM sleep. It is not an obvious problem, people think some wake-ups and snoring are normal, but often they are not normal at all.

For our family we are, of course, nervous about the short term procedures our toddler is going to undergo to treat her sleep apnea. But we are hopeful that someday soon she can sleep. Sleep the whole night long. Something crazy like 7pm to 7am. We're excited to see the happy cheerful delightful side of her personality come out even more, and hopefully her intense temper tantrums, emotional sensitivity, and extremely short attention span will know to normal 2 year old temper tantrum attention span levels. I'm not delusional that she'll suddenly be constantly happy and entertain herself for long periods of time. But we are excited for her to feel the freedom that good rest can bring, I'm excited for how much better she will feel.

Anyway, a lot is going on in our family, but this is the biggest news of all. A new direction to pursue for Evie. Hope this information is helpful to someone else out there, it was a lot to type. Phew. All done.

9 little remarks:

Angie said...

Wow Anna. I have NEVER thought your kid was just a "terrible sleeper" and I hope you are getting closer to some resolution. I can totally see how important sleep is. I mean, your body can go longer without food than it can go without sleep! And when my kids are sleep deprived it absolutely effects their moods. I think you will notice a huge change with that! Thoughts and prayers your way as you go thorugh the next steps!

Malinovka said...

Wow, finally real answers! This is so interesting to me--I've thought for a while that there was probably some sleep issue with our oldest, but couldn't figure anything out. Thank you for sharing this journey with us. I hope that now you have answers, resolutions will come soon!

SD and EJ said...

Good luck, Anna! My little Ashlyn was once in Primary Children's Hospital and it's so awful/hard to see them all hooked up and having crazy tests done. But I still think it is and will be SO worth it for your entire family. I hope they figure everything out and that sweet little girl gets some sleep.

Tiff Keetch said...

Wow, Anna... I'm all teared up. My thoughts and prayers for you and your little sweetheart while you figure out all of the details. Hopefully this will be the beginning of the end of all the sleep troubles!! :)

Brooke said...

I surely couldn't handle 2 1/2 years of sleep deprivation, look at all you still functioning so well. I would pretty much shut down. It's true the ADHD being linked to sleep deprivation. I also think ADHD in elementary schools can be linked to poor nutrition, and poor sleep habits. Of course you would be wound up and irritable and can't focus if you have only eaten sugar or highly processed foods all day (some of my kids would come to school with just a coke for their breakfast) AND they don't go to sleep at regular times at night.) I’m not saying Everly has poor nutrition, just that in elementary school kids are WAY overdiagnosed with ADHD and put on medication when really all they need is better food and better sleep habits. Good luck on Monday, we’ll be praying for you guys!

*Aliese* said...

WHOAH! That is a bit of a shocker. Glad you're on track for some answers though; I can't even begin to imagine the stress and frustration (for ALL of you!).

Tess said...

I am so glad your sweet girl has you as her advocate. I really admire you as a mother.

Tannie Datwyler said...

So, when Linus wasn't sleeping well, I thought I had it bad. :) But it was a couple years after that, that you had Evie. I remember thinking "oh my goodness, I can't even believe she STILL isn't sleeping." I could only sympathize to a certain point. I lost my mind at 8 months when Linus wouldn't sleep and I praised the heavens when he FINALLY slept at 10 months. I marvel at you!! You and Joe are TRULY amazing.

In any case. I saw this video when I was struggling with Linus. It really put a lot of things into perspective. It made me realize that Linus was normal. Evie and this little boy have issues that can't be easily spotted. It's amazing what is out there - but thankfully we can get medical answers. You and Joe are so good to go to every measure to help your little girl.

After watching this video I came to realize just how crucial sleep is to little ones. It's crazy.

Also, thank you for the AMAZING insight into ADHD. I have long thought that ADHD is over diagnosed, but I had no idea that it could be sleep issues.

painty (Melinda) said...

I didn't realize skinny two year olds could have sleep apnea either. Such a hard thing to go without sleep for all of you! I hope they are able to find what's wrong and help Evie. Thanks for sharing this info.

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