Friday, December 11, 2009


photo credit-Jun's World
Creative Commons license


One of the most common, natural things there is. Most of us never think about it much at all, until we (or someone close to us) has problems related to it. There are a multitude of disorders that can affect our sleep. Insomnia, sleep apnea (central or obstructive), narcolepsy, sleep paralysis, sleep walking, night terrors, etc. You get the idea. Sleep disorders of one sort or the other seem to be a lot more common in those on the autism spectrum.

Buddy Boy has never seemed to require (or want) the same amount of sleep that most kids his age get. We've tried regular routines, music, melatonin, night lights, and various other meds to try to get him to sleep thru the night. We've gotten to the point where he'll go to bed at a predictable time (8:30-9:00 pm-not bad for an almost 10 year old), and usually sleeps until 6:00 am, though sometimes he's up at 2:00 or 4:00, and stays up for the day after that. We're fairly accustomed to his routine. That's not the problem.

Sweet Pea, his 7 1/2 year old sister, has been having sleep related problems since August. At first it was her getting up every night screaming. When we'd come into the room, she'd complain that her stomach was hurting. Mostly it was an epigastric centered pain, and only occurred at night. When she woke in the morning, she still complained of stomach pain, and her diet (which Liz had pretty full of good things-protein, vegetables, fruit), devolved to milk, cheerios, and cheese. Everything else hurt to eat (according to her).

At first I felt it was most likely related to anxiety regarding school starting up (Sweet Pea is a fairly high anxiety kind of kid) and hoped that by not paying too much attention to it it would go away. Well, Sweet Pea got into the swing of school, liked school, and it didn't go away. I took her to a pediatric GI doctor near the end of September, after starting her on some Prilosec (Sweet Pea had reflux pretty bad as an infant, and I thought it reasonable that perhaps it had recurred). The GI doctor agreed, and she is now on daily Prilosec. The stomach aches have "mostly" gone away (though not completely-when she was an infant putting her on Prilosec changed her in 48 hours from a miserable baby who cried every night for three months straight to a happy, smiling kid). Her diet, now that she's on the Prilosec, has once again normalized.

Sweet Pea continued to wake up most nights, sometimes screaming, sometimes coming in to wake us up. Most nights it's sometime between 1:00 and 3:00 am. Although it's somewhat disruptive to me, it's majorly disruptive to Liz, who often can't get back to sleep (internship was good training for me). For the last several weeks Liz has been sleeping downstairs in the family room, so as to try to get some sleep. She also has not been very happy. :(

Sweet Pea's pediatrician has prescribed a mild anti-anxiety agent, which has helped some, but not completely. Instead of 5-6 nights out of 7, we're down to 2-3 nights out of 7. Not even paying her 25 cents to not wake us has helped (Sweet Pea will make lots of money when she grows up-she is very focused on making money-to the point that I constantly remind her of all the other really important things out there that are more important).

We, being experts in sleep as much as anyone out there, have tried as many different things as we could think of. I'm not really looking for any new ideas, just venting a bit, I guess.

And dreaming of the day when both kids will sleep through the night.


farmwifetwo said...

Before you blast me... I'm going to recommend you check her diet. Now I'll tell you why.

When my eldest was 2.5 for well over a year he'd had vicious diahhrea - the rashes to the pt of bleeding, the nightly nightmares/terrors - were all dx'd as "teething". Had he not had "issues" - which we were told at 2.5yrs were mild PDD but the Dr had noted long before and hindsight... they were there... We probably would have had a discussion on family history (IBS mother's side) and "let's see what foods he's intolerant to".

Turns out ours was dairy - My bro (liquid milk), me (soft cheeses). 48hrs later bye bye all of it. 7 days later one tiny bit of butter turned into a 24hr vicious meltdown. My guess it caused nasty stomach upset and maybe even a migraine but a non-verbal PPD child cannot tell you these things.

NOW... Yes, removing them helped his development, but you try learning when you feel crappy. Do I think it was a cure - NO.

We've spent the last year weaning him back onto dairy - he just turned 10 a few mths ago and his dx is "mild NLD" (unofficially, officially it still reads "a mild form of ASD), he is "normal-ish" (ie passes for normal in day to day living and will be as an adult), verbal etc (through a lot of speech, education and living) so he could tell us if it made him ill.

It could be anything... but what's removing a food this week, and another one next week... except for some extra sleep and being able to remove the drugs.... Not that big of a deal, is it.

Niksmom said...

UGH. Joe, I so feel your pain (espec. Liz's!); you may recall what we've been through with Nik and the everynight waking for hours in the middle of the night. I thin kit's the distress, the pain, the anxiety that he experiences which affects me the worst; I want to make it better and I don't know how.

We are only lately discovering that Nik has developed sensitivities (not allergies) to several ingredients found in so many foods...corn (and derivative producst like citric acid!) and legumes being the worst offenders. Removing those things has made him more comfortable. The sleep issue is ongoing but it's not as frantic as before.

Hoping you find an answer to the mystery and you can all get some sleep again.

Wishing you all happy holidays,too!

mumkeepingsane said...

Sleep (or lack of it, I guess) is definately one of those tough issues. Hubby and I spent years trading off shifts at night. First it was night terrors, then seizures, then waking at all hours....Patrick also seemed to need much less sleep than the average child.

So much guesswork involved and pinning down the cause (causes?) of these things always seems to be difficult. Good Luck, and I hope Sweet Pea is feeling more like herself soon.

Ange said...

oh, I'm sorry. :( Sometimes I take melatonin when I can't fall back asleep. I've maybe slept through the night a handful of time since Bubba was conceived 10 years ago, but the times where I only get a few sporadic hours set the entire family up for an awful day. Much love to you, sweet pea, and Liz.

kathleen said...

Thats a tough one..both of our boys didn't sleep much at all until they were was tough. It was one of those things that we just had to get through. They are both better sleepers now. My daughters though...we have gone through periods of them getting up a couple of nights a week..I find that this wears me down more than the boys ever did-I don't know if it is because I got used to regular sleep again..or what. I hope that your little one gets back into a regular sleep pattern...and that your wife can come back to bed. :)

Club 166 said...

@FW2 and Niksmom,

As Sweet Pea was literally down to milk, cheese, and cheerios for a couple of weeks (with no change), then she has considerately narrowed our possiblities to dairy and cheerios. I suppose we could try eliminating those, and see what happens, though I have few hopes in that.

It seems to be much more anxiety/nightmare based now. It's really sad putting Sweet Pea to bed. Tonight while I was sitting at her bedside talking to her, she was saying things like "I just can't take it anymore. As soon as I get rid of one problem, I get another." (referring to getting rid of dreams of mummies and zombies, only to remember a scary dream about a little boy who got taken by some bad guys).


Corrie Howe said...

I follow a blog called "To Sleep or Not to Sleep." She's not slept through the night in years.

My son with autism doesn't sleep very well either. However, he's learned to play quietly, read and "get a mid-night" snack.

Our doc suggested Meletonin, which is natural and works sometimes.

Crying Baby Help said...

For babies to have a sound sleep, they must have a consistent bed time routine. Lay down the baby on the same bed even for naps, make the room dark and play some music. This way it will keep the baby from crying too.

Marla said...

Oh my. I so know the struggle you describe here and it is sooooooo hard on the child and everyone else in the family. Your son's sleep cycle sounds very similar to M's. You have tried everything I ever tried. Sweet Pea is struggling too. Sigh. I hope your wife gets caught up on her rest. Lack of sleep for the first several years of M's life wore me down and did a number on my health. I hope things improve soon. Don't give up.

storkdok said...

I'm so sorry! We didn't get sleep throughout the night until 15 months ago, after more than 8.5 years. It took years to figure out the pieces to the puzzle, as each kid had their different and multiple reasons. We somehow got them to sleep in the same room, using a trundle for the little guy. They "keep each other company", so they are not so afraid of the dark and being alone. I am still a light sleeper, despite an OB residency! There were times I was desperate for sleep!

I hope it resolves sooner rather than later!

Happy New Year, Joe!

Daisy said...

Hugs and sympathy to both you and Liz. We went through night terrors with Amigo when he was a toddler, and just 18 months ago he had major gastric problems. He's doing better now, but diagnosis and treatment took months. It was hard on all of us; he lost 40 pounds in 6 weeks.
He is now on a normal diet and only needs yogurt or acidophilus to regulate his digestion. I hope Sweet Pea heals soon and completely - for her sake and yours.

Casdok said...

I hear you. C only manages about 4 hours a night. He also had gastric problems (which took years to sort) which meant those 4 hours were broken. So very hard.
Glad the anti-anxiety agent has made a bit of a difference.