Central sleep apnea in children

bespangeled

bespangeled

Scooby
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May 26, 2014
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Black Thorn
Anyone have any experience in this area? My 18 month old grandchild was just diagnosed with this - it's not the same as obstructive sleep apnea. It originates in the brain stem - the normal reaction to lack of oxygen is somehow not activated. She had the sleep study a few weeks ago because she wakes up crying several times a night. Results came in today - and we've been researching. While I can find info on CSA it usually involves adults with heart problems or strokes, and premature infants - anything for healthy children is about obstructive apnea, and usually deals with tonsils.
 
I don't have any experience at all. A friend of mine is a paediatrician at a big hospital, though. If you want me to, I could ask her if she knows of some good literature on the topic. Let me know, in that case.

It is so hard when the children are troubled.
 
I would love any links she might suggest. It can only help to know what questions to ask. The odd thing is that, as far as we all can tell, this is just not a problem that a healthy kid gets. Knowing that's not true would be a help - that healthy kids can have this from birth with no other problems - that would be a relief
 
I'll check.

Also: Small kids are weird. One of mine suddenly developed a neurological disease that is extremely rare in children. When it does show up, more often than not it is a chronic disease. A few months later, he was absolutely fine. Not a symptom since then.
 
Oh, I'm sorry to hear that. 🙁 It sounds like quite an out-of-the-blue diagnosis. Research definitely sounds like your best bet.

It's so difficult when you feel helpless. I hope you get some answers and helpful information.
 
She has an appt with a pediatric pulmonologist, a pediatric neurologist, and a cardiologist. The general response is that this is pretty serious or we wouldn't have all these specialists lined up. As far as pediatric central apnea, they put the pre-term babies on a monitoer that beeps if the baby stops breathing to wake them up, and premies always outgrow it by the time they are 6 months old. She was full term, healthy and is now 18 months old - not sure how a monitor would work because she's far more mobile than a premie is.
 
My doctor friend didn't have any experience with this. She is busy cramming for an exam just now, so she hasn't got time to look for any articles. If you still feel that you haven't gotten the information you need later on, I will ask her again.

My thoughts are with you (I'm not of the praying kind). I hope they can figure it out fairly quickly.
 
I'll keep you posted on what we find out. Everyone I know in the field says this happens with head trauma, but she has never had any sort of head injury. Thanks for checking - I really appreciate!
 
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