Down Syndrome and 4 year old needing CPAP

I am new to the forum and would love to know if there is anyone else out there that has had experience with CPAP on young children with Down Syndrome

We are going into hospital next week to get him hooked up and try to get him to wear it.

His apnea is severe so we really don't have a choice but he hates wearing the mask.

I am in Australia but would appreciate any advise other than playing space games.

best regards
Michelle

*** edited - skip my skeptical post and read the ones below which are encouraging *******

I'm really sorry to hear about your tough situation. With all of the stories from mostly functioning adults who have a hard time getting used to xPAP, I can't even imagine that a sleep deprived 4 year old with Downs could adjust to xPAP. It seems like xPAP initially makes it harder for most people to get a good night's sleep. Have they assessed the source of his apnea and presented any alternatives? Doctors seem to always test the least invasive approaches first, even when they have extremely limited chances of succeeding, before moving to the treatments they think will work.

All kidding aside, as I fall asleep, I always imagine I'm going underwater and my mask is my scuba gear. When I wake up in the middle of the night to go to the bathroom, I sometimes have to convince myself I won't drown if I take the mask off.

I would also work on comfort - keep trying on masks until you get one that really fits well and do everything else you can for comfort. I like PurSleep scented oils - maybe they have a nice candy scented oil?

Hi mishfletch. Below is the link to the topic when it was discussed before. Maybe you could PM HeatherN since she has walked this road before you. Best wishes.
Kathy

viewtopic/t18698/I-need-help.html

One of the things that made starting therapy difficult for me - 3+ years ago - was the smell from the mask and the machine.

Sleepguy, a member of this forum has now developed an "aromatherapy approach to cpap" - based on the realization that the plastic-y smells can be troublesome for some of us.

The sense of smell is extremely important for human beings, even when we're not aware of it. Your son may be reacting to the mask's foreign/unpleasant smell. Take a look at Sleepguy's site: http://www.pur-sleep.com, and think of ways if making the smell experience of this therapy easier for your son.


A few month's after the thread mentioned by Kathy, HeatherN reported that her daughter was doing well with the cpap.

Good luck.
O.

I have quite a few patients on CPAP that are under the age of 10. They usually do surprisingly well. I always let them take charge of the machine. It helps to let them "Play" with it supervised. Have it blow and let them hold the mask up to their nose. I think that after an adjustment time they will do fine. It is the parents that usually suffer more by waking up in the night to check on them.

I attended the Sleep 2008 conference in Baltimore, MD last week and ended spending a lot of time talking with doctors who treat children on CPAP, including one in particular who works exclusively with children with disabilities such as Downs Syndrome. She indicated that children with disabilities often suffer from apnea but it's a challenge to get them to use the equipment. They find it to be scary and uncomfortable but there are ways to help them get treatment.

The aromatherapy products are equivalent to the scented anesthesia mask (bubblegum, banana, etc.) that pediatric anesthesiologists have been using for 30 years to get kids to take anesthesia. Because of this I recently developed a line of six artificial aromatics: Bubblegum, Strawberry, Peach, Black Cherry, French Vanilla, and Dark Chocolate.

Because of the high degree of interest in the CPAP aromatherapy products and the Pap-Cap, I am putting together an aromatherapy package for kids (the KidPack) as well as a youth-size Pap-Cap (still under development). I will be providing inventory to these doctors as soon as I can so there will be more to come in the next few months.

Thank you very much for all your input. I am reading through everything this weekend as Tuesday we go into hospital to start the CPAP for Toby. We have 3 nights in the children's hospital and then the last night another sleep study.

I am truly amazed how helpful i have found this site to be being that i have only been a member for 2 days - i wish i found it about 1 month ago to help me prepare.

I apreciate everyone's input and will let you all know how we go.

best regards
Michelle

The air candy from pur-sleep really does help me. I know I'm a few years older then 4 but I had a horrible time with the mask coudn't wear it untill I found pursleep products my sister got them for my birthday went from an average of 2 hours a night (most of it was from the hour of tv before bed) to 5 hours of sleep time. I really like the black cherry smell it reminds me of going to a fair and drinking coke eatting cotten candy.

just wanted to let you all know that our visit to the hospital has been delayed for a few weeks as there are no available beds in the children's hospital - i will keep you all posted.

thanks
Michelle

Well - what a disaster our hospital visit was. Toby just wouldn't tolerate the CPAP mask with the airflow. I managed to get him to sleep with just the mask the first night and then when the doctors actually had a look at the mask on his face they decided it was just too big. AFter trialing a few other masks with great difficulty they found one which is small just over his nose - he wasn't as receptive to this mask and as soon as i turned on the air - forget it - he went hysterical and i couldn't keep him calm - as soon as he calmed for a minute i let his arms go and he just took off the mask . This was the routine for 2 sleepless nights at the hospital when they decided to discharge us and told us we would have to try again in a few months but this time they would give me everything to do at home. Well this isn't going to help or be any easier - so we will just have to see.

In the meantime they have given him Melatonin but after two weeks so far still no help. He sometimes in the night just walks down to my room and still gets up around 4.30 am or just gets up at 4.30am anyway - needless to say my husband and i are walking zombies.

michelle

Michelle,

Thank you for the update. Wish there was something I could say to help, but just want to offer my support and encouragement.

I just got back out of bed after an hour of misery because my medication for my limb movements is not working. I know this is temporary and some day I will have relief again, but I was feeling quite pitiful and dreading a long night before me.

I came here and the first post I read was yours, and my pity party was over. How hard it must be for a little child to not rest well and not be able to understand that this scary thing will make them feel better. And to you and your hubby, who in all your tiredness have to deal with wanting to help your child and not be able to make it happen.

My thoughts and prayers are with you.

Kathy

Depressing as it my have been in the hospital, it might be better at home, where there are many things Toby is used to.

Did they try anything to make the smells familiar?

Try to get the machine for home titration for a longish time, and then try to let Toby play around with the blowing air during the day, without having it on his face. Your only aim at the beginning should be only to make him feel comfortable with the machine, mask, air. Don't even think of getting him to sleep with it at this stage.

Just run it, so he get familiar with the noise.
Let him aim the blowing air at yourself (your arm, your face), at a teddy bear if he has one, at his arm, at the back his arm, eventually at his cheek.

If you can trust him to turn it on - let him do that, so that the blowing air becomes something he can control. I realise it may be a problem if he turns it off at random when he has the mask on, but if you can, in any way, teach him, or train him to control the air flow properly then he may feel less terrified by it.

Let him get used to the "mask+air" from the beginning, so that the sensation - and sound - of the machine don't come as a sudden surprise.

And make sure to give him a few days of play time with it. Concentrate on having Tobe feel comfortable with it. He will pick up on your deeper feeling - that you want him to feel comfortable. Eventually do a "lets play at going to sleep" and let him put you to sleep with the machine, or the teddy bear (if he doesn't have one, buy one especially for using the cpap on. It's a teddy that needs Toby's help).

I would even consider leaving the machine on, and blowing by his bed for a night or two.

Try to contact a good children's cardiac surgery unit, and ask them how they prepare young kids for elective surgery. Letting the children change passive into active is extremely important under those conditions.

My nephew had to go through surgery when he was 4 years old. The hospital had an excellent preparation system, with photos of a teddy bear going through the procedures, and that special teddy bear, bought especially for helping my nephew feel less overwhelmed by the surgery at 4 year old, still comforted him almost 2 years later, when he and his family had to face Saddam Hussein's missiles lobbed at his home town.

O.

[quote="mishfletch"]Well - what a disaster our hospital visit was. Toby just wouldn't tolerate the CPAP mask with the airflow. I managed to get him to sleep with just the mask the first night and then when the doctors actually had a look at the mask on his face they decided it was just too big. AFter trialing a few other masks with great difficulty they found one which is small just over his nose - he wasn't as receptive to this mask and as soon as i turned on the air - forget it - he went hysterical and i couldn't keep him calm - as soon as he calmed for a minute i let his arms go and he just took off the mask . This was the routine for 2 sleepless nights at the hospital when they decided to discharge us and told us we would have to try again in a few months but this time they would give me everything to do at home. Well this isn't going to help or be any easier - so we will just have to see.

In the meantime they have given him Melatonin but after two weeks so far still no help. He sometimes in the night just walks down to my room and still gets up around 4.30 am or just gets up at 4.30am anyway - needless to say my husband and i are walking zombies.

michelle

Toby used the Flexi-fit fisher-paykel but that was too bigso they gave him teh Profilelite Nasal Cpap (i think) but i don't think it would it would matter which mask - they are on his face and he is tactile defensive anyway