Musings of a Marfan Mom

Sleep Issues…Again!

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I think it’s been at least 6 months of J having frequent night wakings. We’ve tried different tactics, thinking this was behavioral, but nothing has made a difference. In March, we went to see J’s pulmonologist for a check-up. I told her of J’s sleep issues, and she thought it might be his daily asthma medication. In 10% of patients it can cause nightmares.

Well, you can imagine what a terrible parent I felt like then! I wish I’d known to look for that side effect from the start. She instructed us to start giving the medication in the morning instead of at night (nighttime is recommended for asthma patients). We saw no improvement, though J had an asthma attack two days after changing the medication timing :-(

We also, at the pulmonologist’s suggestion, scheduled an appointment with our sleep pulmonologist. I fully expected that the asthma med would be the culprit, but it wasn’t. Our sleep pulmonologist checked J’s feratin levels, which were on the low side of normal. Low feratin/iron levels can cause restless leg syndrome, so we treated him with iron supplements for a month. No change, and not only no change, but now that he’s in a toddler bed, J comes and lays outside of our door until we discover him (which doesn’t take long).

I’m leaning towards this being behavioral, but the sleep pulmonologist agrees that we need to rule out J’s sleep apnea being back. That means next week, he and I will head back to the hospital for sleep study #5. He hasn’t had one in over a year, so I hope he’s cooperative!

blond toddler

J at the sleep pulmonologist’s office

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2 Comments

  1. Ugh. All I can say is Ugh. Sleep issues are like a viscous circle. With Lee the cure was just as disruptive as the problem. Picture me getting up several times a night to put the apnea mask back on him. He had to be some what awake to get it off, there was head gear and a velcro chin strap…. I hope it is something that this is easily “cure” with. This makes me tired just thinking about it.
    xoxox

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  2. Oh man. Sleep struggles are SO challenging! I’ll keep my fingers crossed that you find a simple (and quick!) solution very soon.

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