Sleep study - what made you decide to have one?

[Mamatohaleybug]

My daughter (lots of special needs) has had sleeping issues since she was born. Yet at 7.5 I've never had a sleep study done for her. I've been thinking about it a lot lately but just can't decide if it's worth the hassle/expense.

If your child has had one, what was the deciding factor for you?

[newmothermary]

For us, we finally had one done because we were tired of not getting any answers as to WHY Devon has always (since birth) been so sleepy and low energy. She has a sz disorder and is on AED so some of the fatigue is attributed to that but still, it didn't seem right. Turns out she has (central) sleep apnea, quite a lot of it. So, the answer (at least a big piece of the puzzle) is that the sleep apnea is what's causing her to have low energy.

[Mamatohaleybug]

Thanks for sharing that! My daughter is also low energy.

What do you do to treat the central apnea?

[khaoskat]

We suspected sleep apnea and the only way to officially diagnose it is through a sleep study.

[Peony]

[MotherWhimsey]

We had to do one in order to be released from the apnea monitor (ds had 2 airway malformations and one was surgically corrected). That sleep study was bad, he had several desats and central apneas and hypoventillates. So they repeated it not too long after and that night was worse, so they put him on o2. We've done nap studies since then, but our only other sleep study has been getting the settings on his BiPap right. We were not expecting them to show anything at that first one, so it was a surprise. I thought they'd do the test and that would be it, we'd just get off the apnea monitor. Not quite how it went though.

[sbgrace]

We had one because of low energy/fatigue and possible airway compromise due to his muscle myopathy. Very small amount of apnea but reduced REM and frequent coming out of deep sleep though...I suspect to protect the airway based on my own sleep study results. I don't regret getting it though in our case it only ruled out apnea.

[newmothermary]

Devon was put on a bi-pap to treat the central sleep apnea. We received the machine and mask over 3 mos ago and we are *still* tweaking with the mask. If there are any air leaks it won't work optimally. Since they do not make pediatric mask (yeah!) we are stuck with trying to fit my dd's small features into xs (adult) masks.

We do however notice a difference in her endurance and energy level, albeit its a small difference. We are hoping that with the tweaking we'll get even better results. We may possible get a custom mask.

[MotherWhimsey]

Originally Posted by newmothermary

Devon was put on a bi-pap to treat the central sleep apnea. We received the machine and mask over 3 mos ago and we are *still* tweaking with the mask. If there are any air leaks it won't work optimally. Since they do not make pediatric mask (yeah!) we are stuck with trying to fit my dd's small features into xs (adult) masks.

We do however notice a difference in her endurance and energy level, albeit its a small difference. We are hoping that with the tweaking we'll get even better results. We may possible get a custom mask.

we have a pediatric mask! It's the blue gel one.
mask picture

[newmothermary]

Originally Posted by MotherWhimsey

we have a pediatric mask! It's the blue gel one.
mask picture

What company and name of mask, PLEASE!!!

[MotherWhimsey]

what we have

other pedi masks

Don't let your HHC tell you they don't make them, that's just baloney! They should be able to order you something that works.

[newmothermary]

Thanks!!!

I thought it was baloney as well.