For quite awhile now, we’ve been concerned that Matthew has sleep apnea. I didn’t write about it until now, because I felt like I needed more information before I shared this with all of you … more than just my “mother’s inkling” that we needed to have this issue addressed.
You see, Matthew is tired all the time. Sometimes by 9:00 am, he is lying on the floor or the couch, just snuggling.
And, I know that he’s not at his best when he is tired – – I’m sure not, when I don’t get enough sleep!
As I looked into this issue, I was a little surprised to find that Matthew has all the symptoms of sleep apnea.
His sleep is interrupted – he can be up 2 or 3 times a night on a regular basis – and those are just the awakenings that we are aware of. Some nights are better than others, though. And, when he has a good night, -wow!- what a happy, playful, agreeable, sweet boy we have!
Bad nights?? Don’t ask. He’s impossible.
He sleeps with his head tilted way back (the position helps to open his airway.) He snores. He breathes through his mouth. If he has any kind of infection (which enlarges the tonsils even more), all these symptoms worsen. One article I read even mentioned that poor growth/weight gain can be a symptom of sleep apnea, and at 24lbs, Matthew isn’t exactly topping the charts for a 2 1/2 year old!
I knew that if this was a problem for Matthew, fixing it would help a lot of things – his demeanor, ambition, and ability to learn during the day were my primary concerns. And, the fix is so simple – just take the tonsils and adenoids out.
When I started looking into things further, I was surprised by just how serious the affects of sleep apnea can be. Here are some excerpts, linked to the original articles:
“Increased arousals have been associated with decreased neurocognitive abilities and lower results on IQ testing. It has been suggested that the increased arousal rate seen in children with Down syndrome may affect their daytime function and could exacerbate learning or behavior disorders. In children with Down syndrome, behavior and learning disabilities associated with sleep loss tend to be overlooked and assumed to be associated with the limited intellectual abilities associated with Down syndrome.”
Also, this doesn’t just affect his mental health. It affects his physical health, too:
“Why is this important? The first problem is that of the child not getting enough quality sleep and the behavioral effects that brings. Second, during sleep apnea, the oxygenation of the blood decreases. It has been shown that in children with DS and heart disease the low blood oxygenation causes an increase in the blood pressure in the lungs as the body tries to get more oxygen. This “pulmonary hypertension” can cause the right side of the heart to become enlarged and other cardiac complications can follow.”
At Matthew’s last cardiology appointment, they were actually a little concerned about him developing an enlarged right heart.
So, why haven’t any of our doctors brought this up, or even mentioned it? I don’t know. But, our fantastic pediatrician in Yakima would always remind me to trust my instincts with Matthew – – after all, I’ve been right before. 🙂
A few weeks ago, we took Matthew to a pediatric ENT in Spokane. With all of his issues, we are more comfortable having him seen at Sacred Heart Children’s Hospital, which is where he was born, and also where he had both of his surgeries. The doctor we saw seemed very comfortable with Matthew, and acted like this was all very routine for her. She took one look in Matthew’s mouth and said, “Oh yeah – the tonsils are enlarged, but at least they’re not touching yet!” She said that most kids with Down syndrome need to have their tonsils around age 3, if not before. Adenoids come out, too, since they are a major culprit in blocking the nasal airways. She said that the tonsils and adenoids grow at a normal rate, but Matthew and his airways remain small … so naturally, they need to come out.
I was happy that she could diagnose him without having to put him through a sleep study. His symptoms and anatomy were enough, and she really thinks that this will make a big difference for him.
Matthew did very well during his appointment – was happy, cooperative and playful. Of course, it helps that he is SO used to getting his ears checked, that sometimes he’ll just do it himself:
Matthew must have done a good job charming her, because she told us how impressed she was with him: “He’s going to be really high functioning, you guys! He is social, interactive, and already has some communication and verbal skills! That’s great!” We are proud of Matthew no matter what, but it still makes our Mommy and Daddy hearts happy to hear that from a pediatrician to sees a lot of kids like Matthew.
We talked about having tubes put in his ears at the same time, due to his history of ear infections (we averaged one ear infection per month over the winter.) She said he has fluid behind both ear drums, which is probably chronic. She tested his hearing – he failed.
That surprised me – I thought he was hearing just fine. But, now that we know he’s having trouble hearing things at low levels, we talk louder, and he responds better!
So, tubes are a go. And, they can do it all at the same time. The doctor was very encouraging that these surgeries could really help, and although it’s not ideal to put Matthew through more procedures, sleeping, breathing, and hearing are all really important things!
First thing in the morning, July 19th, Matthew will be in the OR again. He’ll spend all day and all night in the hospital, hopefully going home Tuesday morning if everything goes as planned. Good thing he likes ice cream and popsicles – and we’ve ordered a couple new Signing Time DVDs to help pass the time. Your prayers that the procedure goes smoothly are appreciated!
Meanwhile, we’ll be enjoying the summer sunshine.