children with cpap

Are children ok to sleep in their own room with cpap, i'm wondering how i would know if there were a problem in the small hours, does anybody have children on cpap and if so what do you recommend.

thankyou for any advice
shirley

You might try a using a baby monitor to keep track of him/her.

How old is your child?

Hello wading through the Muck

He is 10 years and 5 months

regards

Shirley

Hi Shirley,

I have a nine year old daughter. She's not the one using cpap, I am, but I think she would do OK. I would still get one of those baby monitors (let me know if you don't know what I'm refering to). You can turn it down low and still hear if he is up fussing with his mask.

Good luck, I hope it's working for him. I have 4 year old twin boys that have asthma so I can understand your concern.

I was seven (nearly 16 years ago now) when I started using my BiPAP, I know its not thte same, but if anything (correct me if I'm wrong) I would think a BiPAP might be harder to get used to than a CPAP as your not in complete control of your breathing.....
At the time everyone said that there was no way that a seven year old could get used to a ventilator (live in UK, I was the first kid at the time) and wouldn't let me even try it. Finally found a doctor that would, he let me try them all, i chose the one that felt the best and he sent me home with it to work on getting used to it. By the time I got it I was unable to sleep lying down, if I did I woke up screaming within 30mins with a headache. I was sleeping proped up against the sofa on a beanbag everynight. I had it all explained to me as to why I needed a ventilator - not breathing enought....oxygen levels going down....CO2 going up and that was why I got headaches. Because I understood exactly what was going on, I was desperate to get my ventilator to make me feel better.
I started sleeping in my mum and dads bed, going for five minutes to start with, adding extra five minutes everynight, somebody always stayed with me, then one night I feel asleep. Once I was managed to sleep all night, and felt comfortable on it if I woke up or anything, then I moved back to my own room. My mum and dad used a baby intercome so I could call them if I needed anything.
Now much younger kids than I was are put on vents all the time. As long as its done properly, and your son understands exactly why he needs it, then I'm sure he'll be fine. The one thing that it taught me was never underestimate kids!

Clare.

Clare, if you're watching...

I feel so in awe and privileged by you relating this incredible background. Please accept my thanks. ... What little adults children can be! And what a sharp memory of it by you. Always feel free to share with us of this forum. We learn, and you've taught me so much from just one message.

Thanks ever so much.

Linda

Thanks Linda thats really kind of you.... I suppose at the time (thankfully) I never realised what a big thing it was. I must of put my parents through hell! They had to do a lot of fighting to get me what I needed. Its not easy being the first! Its only now that I fully understand how bleak things were - my spine collapsed leaving me with 24% lung function, I needed surgery to stabalise it, but without a ventilator it would of been pointless. Nobody wanted to do the surgery unless I got a ventilator..... I just remember feeling very angry and indignant that nobody let me even try one - it made me even more determined to prove them wrong! Stubborness can be beneficial at times!.....

Shirley Drew - try and get in contact with other young people on CPAP that could speak to your son. I never had that, I was always the oldest, so was asked several times to talk to some of the newbies that were down about it and having a hard time.

Clare.

Clare,

Thanks too. If you haven't already been given the suggestion, you might consider registering to this site, if you like. Or use the private message feature. Perhaps you're already aware of them. You're always welcome to send me or others private messages, if they don't quite fit the topics. If not, keep us enthralled with your posts.

You have an incredible memory. And it amazes me someone as young as seven or so could think so complexly and articulately. Yes, you had amazing parents, I'd say. Their stories alone must be awe-inspiring.

Linda

I have a nine month old on BiPAP and she is doing very well with it. Their are two serious risks for our child that have come up, but they may not apply to a 10 yr old. The first is that if the machine stops working or the tube comes off there is no way for the exhaled air to escape, and she is at risk of suffocation from rebreathing. The second is from a humidifier in the circuit. If not positioned correctly, condensation from the himidifier can build in the mask and start to restrict her breathing. In our case, our daughter sleeps in a crib about 3 feet away from us. Because of these risks we can't have her in another room.

Thankyou to everybody for your valuable advice.
If there are any children using cpap it would be great to hear from you.
shirley

Some c-paps have an alarm. My child's alarm goes off only here and there. In the beginning, it went off several times a night. Now it is very infrequent. I now can tell very early if he is getting a cold because he has more of a problem with his mask and keeping it on. (The alarm has sounded up to eight times in one night. All you have to do is reposition the mask and reset the system. I can now do it with my eyes closed.
Good luck. It is not all that bad.

shirley drew wrote:Are children ok to sleep in their own room with cpap, i'm wondering how i would know if there were a problem in the small hours, does anybody have children on cpap and if so what do you recommend.

thankyou for any advice
shirley