Wednesday, October 03, 2007

Sleep, surgery, speculation

I learned this week that Bud needs to have his tonsils and adenoids removed. I knew it was coming. His tonsils are the size of my head. (Okay, not really - but you know what I mean. They're really big.) When he's sick, he has trouble breathing. This summer we had to rush him to the emergency room; that's how bad it gets.

It turns out that his tonsils aren't just causing problems when he's sick. They are also causing sleep apnea, which, in turn, means that he is not having restful sleep. The lack of restful sleep was not news to me. The apnea - the fact that he stops breathing while he sleeps - was. And that's a fact that could give me a lot of sleepless nights.

So he's scheduled for surgery in December. I had my tonsils out a few years ago, and it was the worst experience of my life. Now, I understand that 1) I am, for the most part, a big baby about things like that, and 2) recovery from a tonsillectomy is easier for a child than it is for an adult, but, still, I wish it could be avoided.

There is a silver lining here, however. Yesterday I told a special educator at Bud's school about the upcoming surgery and she said, "Have you seen the research that suggests a connection between tonsils and ADHD?"

I hadn't. But now I have, and it makes me hopeful. Bud doesn't technically have an ADHD diagnosis, but behaviorally, a lot of Bud's challenges look an awful lot like ADHD. So it will be interesting to see what the long-term benefits of the surgery are for him.

At the very least, it's likely to result in more and better sleep. For both of us.

20 comments:

Mom without a manual said...

We actually have a friend whose child had a PDD-NOS label around the age 3. Then they discovered his sleep apnea issues around the age of 5. After surgery it was almost as though he was a completely different child! Still charming and adorable but so much more verbal and calm.

I also had my tonsils out as an adult. It was horrible! It was a couple weeks and then some to recover. Then I've seen kids have the surgery and want to be outside playing the next day.

I am eager to hear how Bud (and Mom) does with the surgery.

Ange said...

Good luck! Bubba had his tonsils and adenoids out (and 3rd eye surgery) at 4 1/2. His tonsils touched eachother but when he got sick, they completely obstructed his airway. We used Nasonex nasal spray from 18 months to 4 years to buy some time before surgery. When he had the surgery (he was having apnea too), we fought for him to be hospitalized overnight (it is an outpatient procedure) because we were so scared about complications and the fact that he was energetic, willful, strong, and refused medications at all costs. (It took 4 adults to restrain him to get the pain medication in him...and I was clocked by the IV block more times than I could count.) But after that night, he was completely himself and in no pain.

Bubba, also a very restless sleeper, had no behavioral changes after surgery. None of his ADHD symptoms went away, at least htere was no dramatic increase in his ability to self-regulate, attention, impulsivity or otherwise. At nearly 8, he is still a very restless sleeper (he's a thrasher and digger).

kirsten said...

how did they find out that bud was having sleep apnea? i know people on my husband's side have had that problem, and lots of tonsils on that side, too. hmm. maybe i'll make sure that they're checked at his checkup next month. off to check the adhd link.

David said...

Best of luck with the surgery. And thank you for the interesting article. Sleep is SO important. The tonsil-apnea connection sorta seems "incidental" but after all, it's all of a piece isn't it? I certainly hope your Bud gets his quality sleep!

The startling rise in the past 20 years of diagnoses of behavioral disorders like PDD and ADD is simultaneously terrifying and fascinating. Our present socio-cultural milieux (late 20th & 21st century USA) is a prime suspect in my book.

Niksmom said...

Oh boy, well that explains some of those sleepless nights, doesn't it? Ugh. Yes, it is supposedly much easier on the kids. I'm sure if you prepare him well, Bud should do fine. Hey, maybe you should tell Dierks and Cassie so they can send him a get well card? I'm serious. Or maybe a way to help him cope? Seems Dierks has been a really great influence on Bud lately. I think they need to meet sometime. :-)

Joyful Dreamer said...

My son Jake age 9 had his tonsils out for sleep apnea in June. He is on the autism spectrum. He is having huge strides with self-regulation at home and school, and of course less cranky now that he can sleep. Everyone who knows him says he's so much happier now. Oh and one side benefit I wasn't expecting.... he stopped wetting the bed every night! Still some major challenges but much more benefits than I was expecting :)

The one thing I did realize during the recovery is that Jake didn't act like he was in pain right afterwards. He had an IV and I assumed he was getting pain meds in it. I later found out he was not. By the time I realized this he was hurting pretty bad. The worst of the recovery for us was days 2-3. After that it was a battle to keep him resting LOL.

kristen said...

Oh sending warm wishes and lots of ice cream. I had mine out at 5 and I seem to remember something about promises of all the ice cream I could eat...

I'm sure you must be worried (I know I would be) but you and Bud are a good team. You'll figure out how to prepare him and ease his way, and I have a feeling he may just do the same for you.

Sending hugs.

Club 166 said...

Surgery is a stressful event (often more so on the parents than on the pediatric patient).

But keep your eyes on the good things to come. Sleep is, indeed, extremely important. I'm sure Bud will appreciate getting more of it.

Joe

Kim Stagliano said...

Sleep is good. Good luck to your little guy. Plenty of probiotics after the rounds of antibiotics he'll probably need to ward off infection! Renew Life brand Ultimte Flora opens and mixes easily into juice. Protect his tummy!

Florence Goodnightingale

:)

Bannie said...

My son has ADHD& Aspergers. We are dealing with a "weight problem" so the stimulents aren't an option so I'm exploring alternatives and I've learned that lack of deep REM sleep can cause the inattention/distractability. (not remembering your dreams is a clue that you aren't getting enough deep REM sleep....case in point I haven't remembered a dream since my son was born 8 years ago!) We are using vitamin b4 melatonin,and inositol to improve the quality of his sleep, and hopefully his attention span.
I had my tonsils removed as a child and it was ouchy but not as painful as not being able to swim for half the summer.
A friend's son recently had a procedure at the hospital and they went ahead of time and took pictures of every step so he would be more familiar less fearful when the time came. They made a book. It was very successful! He was as cool as a cucumber.

MOM-NOS said...

Kirsten, we went to the ENT as a follow-up from his ER visit and at the urging of the ER doctor, who suggested that we get a sleep study. Instead of scheduling a sleep study, she instructed me to sit by Bud's bed when he was sleeping and breathing audibly and then report back what I heard. When I did (pauses in the breathing, followed by loud snores or a clicking noise), she said "Yep - that's apnea."


Bannie, our hospital has a program that allows kids to come in to tour the OR, recovery room, etc. prior to surgery. (They also let them come back for a tour after the surgery for a "debrief".) I think it will help Bud a lot. I imagine we'll bring along a camera to make a social story.

for what it's worth said...

Sleep Apnea is enough to warrant having tonsils out in my book. Interesting link with ADHD...something for me to do some more research on with my new student...
Surgery is never fun, but it is true that kids bounce back a gajillion (yes that's a medical term!)times faster than we do.

Of course, you'll keep us posted and let us know when we need to send those healing vibes and the like....

Maggie Rosethorn said...

Mom-NOS...my daughter also had sleep apnea and airway obstruction from her tonsils. She had them out at age 5. She hated (and still does) to take liquid pain medication, so you may need to work with Bud before the surgery about swallowing "yucky" tasting meds.

Also...since Bud is still young, see if the MD will allow an overnight stay (most insurance companies will allow it for a child under 10, if the MD requests it for medical reasons/concerns). You can stay with him overnight in most hospitals, and he will be better medicated.

My daughter was not much different at first, but later we noticed a change (she was more alert and happier) as her sleep patterns evened out with the apnea gone.

kristina said...

Charlie has not had to have his tonsils out but I have not----but one of the big memories of my early childhood was my sister getting them out. It's good to have an actual explanation for sleep trouble. Scarey about that summer visit; one thing after, after another.

On ADHD and autism, a recent interesting exchange, with comments from a college student with autism.

gretchen said...

Henry had his adenoids removed when the tubes were put in his ears (at age 3). The whole surgery experience was very traumatic for me, but probably not for him. His snoring decreased quite a bit after that, although he still snores!

Mary G said...

I had my tonsils out twice -- once at five and once at ten (I'm a tonsil grower; I have a fine set now -- 'not much enlarged' my doctor says.) I remember both surgeries. I vividly remember not wanting to stay overnight at the hospital overnight the second time, but parents were not allowed to stay with kids back then, and I was a velcro kid, so that's probably why.
The first time, the next day I wanted bacon for breakfast, if you can imagine. My mother gave me the bacon. She says I ate it, with tears rolling down my face.
Obviously, not traumatic or horribly painful. I am sure Bud will sail through.

kyra said...

yow! but bud will sail through this, i know it! with you by his side. and then he can return to only having ONE head. one glorious, tonsil free head. think of all that new room in his throat for more bud-isms.

David said...

Lots of thoughtful commentary! Nice.

Surgery certainly is not trivial, but gigantic tonsils sound like trouble. Sleep study maybe useful too but the DIY observation that the ENT suggested probably saved you some money ...

I like your idea of the documentation, and it sounds like Bud might like that too. When my son (also nicknamed Bud) had his heart surgery at Boston Childrens, I took lots of pictures. These pictures might weird some people out, but I'm glad to have them.

Gretchen said...

My 13 yo daughter was diagnosed with PDD-NOS at age 3 also. My husband has sleep apnea, and I know she snores. Something to check out at the next pediatricians visit.

Hope your son's surgery goes well.

www.xanga.com/niknaknoke

LAA and Family said...

Best wishes as you prepare for surgery! We just had a great experience with outpatient surgery for root canals on 2 of Samuel's teeth. Social stories, visual schedules, and talking about what was happening all helped make for "smooth sailing."