Hi everyone, I'm new to this board and I'm hoping that someone here can give me so info.  First let me tell you about my ds.  He is 16 months old, with no real diagnosis yet but probably some genetic or neurological disorder.  He has several health issues including developemental delays, hypotonia(low tone), seizures, apnea, reflux, sensory integration disorder and some metabolic problems.  He has both central apnea, obstructive apnea and hypopnea.  We finally saw a pediatric apnea specialist and has put him on a cpap.  Home health brought out the cpap machine today.  I'm not sure how to get him to use the cpap machine.  The doctor recomended slowly getting him used to it by each night getting closer to him going to bed with it on but starting off with just letting him hold it but not put it on the first night.  But when they brought it out today they told us he wouldn't get used to it so just put it on him after he goes to sleep.  I don't know what to do or how to get him to use it.  Has anyone else had a child put on a cpap about this age?  The other issue I'm worried about is where he will be sleeping with it and if he can sleep on his stomach while using the cpap?  He usually goes to bed in his crib but rarely does he wake up there.  He's had so many problems and been in the hospital so much lately he has a very hard time sleeping on his own.  I usually end up bringing him to our bed at some point during the night and a lot of the times he still nurses during the night.  I'm wondering if I shouldn't just put a mattres in by his crib until he's adjusted to the cpap.  The doctor wants to get his settings right and him adjusted to using the cpap pretty quickly so we can go back and do another sleep study to see if he is still having central events and then decide what to do about those.  Please anyone have any advice on what to do or how to put him on the cpap please help.
Thanks in advance
Amarisa

Wow, that's a tough one. Hannah was eight when she started. I am wondering if maybe you should just start out with him in your bed, or maybe could you move his crib next to your bed?? For the first couple of weeks, I had her sleep with me until she got comfortable with it. You could try sitting with him before bed time and having him try to wear it watching tv or reading books until he goets used to it. It will take some time.   He may be able to sleep on his stomach but it might be difficult. Hannah is a side sleeper and does ok with it.I think the biggest thing is to go slow and don't make it a power struggle. Try to make it as positive an experience as possible and don't let him see you get frustrated. Good luck, hopefully some others will have better advice.


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Heather-Mom to Hannah(8-hose head) and Logan(4), wife to Paul (also a hose head)

HI,

I'm mom to a 24 yr old w/severe dev.dis. due to malformation of the cerebellum and including sensory integration dysfunction, hypotonia, central apne(and very possibly some obstructive---he will not cooperate w/a sleep study).

The first thing I want to say is that I think you should listen to the advise of your doctor over the tech's that brought the equip because I'm pretty sure they aren't familiar w/ Dev. Dis and sensory integration which are 2 very important factors.

Is your son tactilly defensive?  (How did he do during the sleep study?  maybe that could be an indicator of how he will do w/the cpap and give you ideas/a plan to anticipate certain reactions from him).  

If he is defensive, or otherwise frightened by the equipment, I think it is very important to introduce it to him gradually.....perhaps VEERRRY gradually.  Let him look it over, touch it, feel the air flow on his hand & then his face, see you try it on, try it on him for only the amount  of time that he is comfortable with----be that a few seconds, or minutes, and gradually work up from that.

If he's able to adjust to wearing it, and it helps him, this just may be the answer to enabling him to sleep thru the night!?  But, don't get pushy, stress-full w/it, take it at his speed/his comfort level.

My son does not have a cpap, we are currently trying him with an oxygen cannula to treat his desats.  He's not doing so well.  After 3 nights his initail fear/anxiety of it has deminished but he still will not tolerate the cannula in his nose for more than a few seconds before he yanks it out (even if I wait until he's asleep).  The DME agency is suppossed to be delevering a pediatric size cannual (but no sign of them for the past 9 hrs) to see if he will tolerate that abetter.  There's no way to force it though....it would accomplish nothing (except misery for all).

take care, and take one step at a time.....I'll be interested to see how it goes.