Hi all, Hannah(age eight) has been on CPAP for two weeks now. Last night we made it to six hours with the mask on. I am actually very encouraged since previously she had not made it past three hours. Sleep DR checked her smart card and it is definitly reducing her apneas greatly. What I am wondering about though, is that she still thrashes around her bed while she sleeps.She does the sit up and flop forward thing a lot. It has actually pulled the hose off the mask and woken her up at least three times. I called and left a message with her DME about getting a longer hose. Do you think in time she flopping around will stop as she adjusts to it all?? I am also worried that she will pull the machine off the nightstand. I tried putting it over her headboard but that makes the hose so short that she can't move much and it wakes her.
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CPAPopedia Keywords Contained In This Post (Click For Definition): hose, CPAP, DME, Smart Card
still thrashing around with CPAP
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Hi, Heather!
I would definitely consider a longer hose. You can propably pick one up on eBay.
For the immediate future, you might want to put the PAP machine on the floor so that the danger of falling is gone.
I wonder if attaching the hose to the front of Hannah's pajamas would work? I'm guessing here, but I'm envisioning a set of three attachments down the first 12 inches of pajamas. If the hose is covered, you could safety pin (or diaper pin would be even better) the hose cover to her PJs. If it's not covered, you could tie a sock or knee-hi-hose to the PAP hose, and pin to that. Make sure to leave enough slack before the first attachment point to allow her to twist her head without pulling at the mask.
That way, when she flops, the hose would flop with her. I'm sure others with more experience will come up with better ideas. I sure hope something will work for you. Let us know how you make out.
Take care,
Cathy
I would definitely consider a longer hose. You can propably pick one up on eBay.
For the immediate future, you might want to put the PAP machine on the floor so that the danger of falling is gone.
I wonder if attaching the hose to the front of Hannah's pajamas would work? I'm guessing here, but I'm envisioning a set of three attachments down the first 12 inches of pajamas. If the hose is covered, you could safety pin (or diaper pin would be even better) the hose cover to her PJs. If it's not covered, you could tie a sock or knee-hi-hose to the PAP hose, and pin to that. Make sure to leave enough slack before the first attachment point to allow her to twist her head without pulling at the mask.
That way, when she flops, the hose would flop with her. I'm sure others with more experience will come up with better ideas. I sure hope something will work for you. Let us know how you make out.
Take care,
Cathy
Heather, I do not have a child on xPAP, and neither of my kids has any form of sleep disorder. But as little kids (2 to about 10 years old) they were the wiggliest things in bed. I refused to allow either one of them to sleep with us because they would kick the stuffing out of you. They would often end up facing the wrong direction in bed, or thrash around until they fell out of bed. I don't know that xPAP is going to help Hannahs thrashing. She'll grow out of it in time.
I agree, pin the hose to her jammies and get a longer hose. I have seen 6', 8' and 10' hoses. 10' should give her plenty of thrash room.
She is a cutie by the way.
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CPAPopedia Keywords Contained In This Post (Click For Definition): hose
I agree, pin the hose to her jammies and get a longer hose. I have seen 6', 8' and 10' hoses. 10' should give her plenty of thrash room.
She is a cutie by the way.
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CPAPopedia Keywords Contained In This Post (Click For Definition): hose
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kavanaugh1950
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I agree a longer hose and attaching it to her pj is a good option. I would definetly put the machine on the floor. she is adorable. good luck.
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Still Thrashing
Heather,
Just a couple thoughts on protecting the machine... Some have said theirs sits inside a drawer beside their bed. With the drawer open only enough for the hose, it would be difficult to pull it out, and if the drawer were about the same depth as the machine, it couldn't be tilted either. Another possibility is to secure the machine from being pulled by the hose by attaching some sort of ring or clamp to the table that goes around the neck that the hose attaches to.
As for her restlessness, has the doctor defined "helped her greatly"? Is her therapy adequate for her apnea? Aside from that, I wouldn't know how to make a wild sleeping child lay still. Never figured that out thru 2 kids and several grands.
Best wishes as you seek ways to make the best of this situation for your beautiful child. Blessings.
Kathy
Just a couple thoughts on protecting the machine... Some have said theirs sits inside a drawer beside their bed. With the drawer open only enough for the hose, it would be difficult to pull it out, and if the drawer were about the same depth as the machine, it couldn't be tilted either. Another possibility is to secure the machine from being pulled by the hose by attaching some sort of ring or clamp to the table that goes around the neck that the hose attaches to.
As for her restlessness, has the doctor defined "helped her greatly"? Is her therapy adequate for her apnea? Aside from that, I wouldn't know how to make a wild sleeping child lay still. Never figured that out thru 2 kids and several grands.
Best wishes as you seek ways to make the best of this situation for your beautiful child. Blessings.
Kathy
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My SleepDancing Video link https://www.youtube.com/watch?v=jE7WA_5c73c
Re: Still Thrashing
I have this problem too. My machine has fallen a few times. I've pulled out the hose and the elbow many times. I am going to secure that machine with velcro straps and get a longer hose. Since I've not got the straps yet, tonight I'll use my chin strap which I don't need anymore.kteague wrote: Another possibility is to secure the machine from being pulled by the hose by attaching some sort of ring or clamp to the table that goes around the neck that the hose attaches to.
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Who Loves Ya Baby?
telly
Who Loves Ya Baby?
telly
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TxStarDiesel
- Posts: 29
- Joined: Mon Jun 11, 2007 12:19 pm
Depending on the type of jammies, you could use velcro if you are concerned about repeatedly using a pin in the jammies. You could sew two squares about two inches apart on her pj's and use a three inch strip glued to the hose for the other part. PJ's might look a little funny, but wouldn't rip from the pins.
I can't sleep with my youngest either! He is a wiggler and a full blast heater . . . too hot!
Good luck and I thank you so much for posting as I will watch my children for signs of OSA.
Terri
I can't sleep with my youngest either! He is a wiggler and a full blast heater . . . too hot!
Good luck and I thank you so much for posting as I will watch my children for signs of OSA.
Terri
boy I can't help you when it comes to children, too hard to separate out what is normal growing up behavior and what is a disorder. I'd be seeing a Sleep Specialist specializing in pediatrics for consultation. In fact so that you know the right answers, I I'd be going to Stanford or the Cleveland Clinic or other learning institution that specializes in these disorders.
Dr. Breus was on Oprah today, he said there are 88 different sleep disorders and new ones being found. Below is just a few.
Parasomnias
A brief description
The term "parasomnia" refers to a wide variety of disruptive sleep-related events. These behaviors and experiences occur usually while sleeping, and are most often infrequent and mild. They may, however, happen often enough or become so
bothersome that medical attention is required.
Bruxism
Grinding teeth during sleep is a very common occurrence and little evidence suggests that teeth-grinding is associated with any significant medical or psychological problems. In severe cases, mouth devices may help prevent or reduce dental injury.
Disorders of Arousal
The most common parasomnias are "disorders of arousal," which include confusional arousals, sleepwalking (somnambulism), and sleep terrors. Experts believe the various types of arousal disorders are related and share some characteristics. Essentially, these arousals occur when a person is in a mixed state of being both asleep and awake or coming from the deepest stage of nondreaming sleep. This means that a person is awake enough to act out complex behaviors but still asleep and not aware or able to remember these actions.
Confusional Arousals: Confusional arousals often occur in infants and toddlers but may also be seen in adults. These episodes may begin with the person crying and thrashing around in bed. The individual may appear awake, confused and upset, yet resists attempts by others to comfort or console. It is also difficult to awaken a person who is having an episode of parasomnia. These episodes, which may last up to half an hour, usually end with the person calming, waking briefly, and only wanting to return to sleep.
Sleep Terrors: Sleep terrors are the most extreme and dramatic form of the arousal disorders and are the most distressing to witness. A sleep terror episode often begins with a "bloodcurdling" scream or shout, and may produce signs that suggest extreme terror, such as dilated pupils, rapid breathing, racing heart, sweating, and extreme agitation. During a sleep terror, the victim may bolt out of bed and run around the room or even out of the house. During the frenzied event, victims can hurt themselves or others.
Sleepwalking: Sleepwalking is commonly seen in older children. It ranges from simply getting up out of bed and walking around the room to prolonged and complex actions, including going to another part of the house or even outside to the yard or garage. The sleepwalker may return to bed or awaken in the morning in a different part of the house. Sleepwalkers might carry on conversations that are difficult to understand and make little or no sense. They are capable of acting out complicated behaviors (such as rearranging furniture), but these activities are usually purposeless, and injuries during sleepwalking are uncommon.
In most cases, no treatment is necessary. The sleepwalker and family can be assured that these events rarely indicate any serious underlying medical or psychiatric problem. In children, the number of events tends to decrease with age. These events, however, can occasionally persist into adulthood or may even begin in adulthood.
Nocturnal Seizures
These seizures, which occur only during sleep, can cause the victim to cry, scream, walk, run about, or curse. Like other seizures, these are usually treated with medication.
Rapid Eye Movement (REM) Sleep Behavior Disorder
Muscles that allow us to sit and stand are normally paralyzed during REM sleep. In some people, usually older men, this paralysis is incomplete or absent, allowing the person to "act out" dreams. Such dream- related behavior may be violent and result in injury to the victim or bed partner. Unlike those who experience sleep terrors, the victim will recall vivid dreams. REM sleep behavior disorder can be controlled with medication.
Rhythmic-Movement Disorder
This condition is seen most frequently in young children but may also occur in adults. It takes the form of recurrent head banging, head rolling or body rocking. The individual also may moan or hum. These activities may occur just before falling asleep or during sleep. Medical or psychological problems are rarely associated with rhythmic-movement disorder. Behavior treatment may be effective in severe cases.
Sleep-Related Eating
A rare type of sleepwalking is "sleep-related eating." People with this disorder experience recurrent episodes of eating during sleep, without being aware of what they are doing. Sleep-related eating might occur often enough to result in significant weight gain. Although it can affect all ages and both sexes, it is more common in young women.
Sleep Starts
Most people have experienced the common "motor" sleep start — a sudden, often violent, jerk of the entire body that occurs upon falling asleep. Other forms of sleep starts also occur just as sleep begins. A "visual" sleep start is a sensation of blinding light coming from inside the eyes or head. An "auditory" sleep start is a loud snapping noise that seems to come from inside the head. Such occurrences can be frightening, but are harmless.
Somniloquy
Sleep talking is a normal phenomenon and is of no medical or psychological importance.
Dr. Breus was on Oprah today, he said there are 88 different sleep disorders and new ones being found. Below is just a few.
Parasomnias
A brief description
The term "parasomnia" refers to a wide variety of disruptive sleep-related events. These behaviors and experiences occur usually while sleeping, and are most often infrequent and mild. They may, however, happen often enough or become so
bothersome that medical attention is required.
Bruxism
Grinding teeth during sleep is a very common occurrence and little evidence suggests that teeth-grinding is associated with any significant medical or psychological problems. In severe cases, mouth devices may help prevent or reduce dental injury.
Disorders of Arousal
The most common parasomnias are "disorders of arousal," which include confusional arousals, sleepwalking (somnambulism), and sleep terrors. Experts believe the various types of arousal disorders are related and share some characteristics. Essentially, these arousals occur when a person is in a mixed state of being both asleep and awake or coming from the deepest stage of nondreaming sleep. This means that a person is awake enough to act out complex behaviors but still asleep and not aware or able to remember these actions.
Confusional Arousals: Confusional arousals often occur in infants and toddlers but may also be seen in adults. These episodes may begin with the person crying and thrashing around in bed. The individual may appear awake, confused and upset, yet resists attempts by others to comfort or console. It is also difficult to awaken a person who is having an episode of parasomnia. These episodes, which may last up to half an hour, usually end with the person calming, waking briefly, and only wanting to return to sleep.
Sleep Terrors: Sleep terrors are the most extreme and dramatic form of the arousal disorders and are the most distressing to witness. A sleep terror episode often begins with a "bloodcurdling" scream or shout, and may produce signs that suggest extreme terror, such as dilated pupils, rapid breathing, racing heart, sweating, and extreme agitation. During a sleep terror, the victim may bolt out of bed and run around the room or even out of the house. During the frenzied event, victims can hurt themselves or others.
Sleepwalking: Sleepwalking is commonly seen in older children. It ranges from simply getting up out of bed and walking around the room to prolonged and complex actions, including going to another part of the house or even outside to the yard or garage. The sleepwalker may return to bed or awaken in the morning in a different part of the house. Sleepwalkers might carry on conversations that are difficult to understand and make little or no sense. They are capable of acting out complicated behaviors (such as rearranging furniture), but these activities are usually purposeless, and injuries during sleepwalking are uncommon.
In most cases, no treatment is necessary. The sleepwalker and family can be assured that these events rarely indicate any serious underlying medical or psychiatric problem. In children, the number of events tends to decrease with age. These events, however, can occasionally persist into adulthood or may even begin in adulthood.
Nocturnal Seizures
These seizures, which occur only during sleep, can cause the victim to cry, scream, walk, run about, or curse. Like other seizures, these are usually treated with medication.
Rapid Eye Movement (REM) Sleep Behavior Disorder
Muscles that allow us to sit and stand are normally paralyzed during REM sleep. In some people, usually older men, this paralysis is incomplete or absent, allowing the person to "act out" dreams. Such dream- related behavior may be violent and result in injury to the victim or bed partner. Unlike those who experience sleep terrors, the victim will recall vivid dreams. REM sleep behavior disorder can be controlled with medication.
Rhythmic-Movement Disorder
This condition is seen most frequently in young children but may also occur in adults. It takes the form of recurrent head banging, head rolling or body rocking. The individual also may moan or hum. These activities may occur just before falling asleep or during sleep. Medical or psychological problems are rarely associated with rhythmic-movement disorder. Behavior treatment may be effective in severe cases.
Sleep-Related Eating
A rare type of sleepwalking is "sleep-related eating." People with this disorder experience recurrent episodes of eating during sleep, without being aware of what they are doing. Sleep-related eating might occur often enough to result in significant weight gain. Although it can affect all ages and both sexes, it is more common in young women.
Sleep Starts
Most people have experienced the common "motor" sleep start — a sudden, often violent, jerk of the entire body that occurs upon falling asleep. Other forms of sleep starts also occur just as sleep begins. A "visual" sleep start is a sensation of blinding light coming from inside the eyes or head. An "auditory" sleep start is a loud snapping noise that seems to come from inside the head. Such occurrences can be frightening, but are harmless.
Somniloquy
Sleep talking is a normal phenomenon and is of no medical or psychological importance.
someday science will catch up to what I'm saying...
HeatherN,
I don't know if you have seen these before but they might help;
http://tinyurl.com/34dv3s
You just clip it to the sheet and it keeps the hose from pulling on the machine.
check your PMs
Brenda
I don't know if you have seen these before but they might help;
http://tinyurl.com/34dv3s
You just clip it to the sheet and it keeps the hose from pulling on the machine.
check your PMs
Brenda
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| Additional Comments: Love my papillow, Aussie heated hose and PAD-A-CHEEKS! Also use Optilife, UMFF(with PADACHEEK gasket), and Headrest masks Pressure; 10.5 |
I am not for pinning the hose to the jammies. If she is thrashing about she might just flip the machine over and there goes all the water in the humidifier onto the floor. I think possibly getting a longer hose and hanging down over the bed like Bellcrest did. She used a hanging basket thingy from Lowe's. Here are her pictures of the setup http://bellcrestboxers.com/cpapsetup.html
Becky
Becky
Wow, thanks everyone. Great Ideas!!!!! I think we are going to try moving her machine into a shallow drawer so she can't pull it off the nightstand and also use some hose clips for added security(thanks Brenda!) I am going to work on getting a longer hose and hopefully then we can put it over her head board.If all this does not help I will try the pin idea-(although a little paranoid about the pins coming undone and poking her, I think the hose clips will accomplish the same thing)She is seeing her sleep Dr every two weeks so I will address this with him.He is a pediatric sleep specialist and seems to know his stuff but if I don't get answers I will not hesitate to explore other options. I guess I should clarify that it is not so much severe thrashing as much as posititonal changes. What she does most frequently is to sit up and then fold herself over between her legs. She is extremly flexible. I associated this with her apneas although with CPAp she does not seem to be having them anymore. I find it strange that she is still doing this and will make sure the DR does not let it go. She also was having problems with periodic leg movement disorder so that may be contributing??
Snoredog- very interesting info. It is kind of ironic, as in the Dr's waiting room I picked up a phamplet on this. I am supposed to be the one in the house without sleep issues but I think I have some form of the parasomnias.I think I may have some form of hypnagogic hallucinations and sleep paralysis. I have many episodes where I think I am awake but actually dreaming. For a long time I though I was nuts and even started thinking maybe I was experiencing paranormal activity(but that is a whole other story!) Once I finally realized that this was going on I relaxed about it. It does make for some really interesting dinner party stories though! I don't think Hannah has this going on but always a possibility. She used to have night terrors as a toddler and maybe there is some hereditary connection going on.Something to definitely think about!
Snoredog- very interesting info. It is kind of ironic, as in the Dr's waiting room I picked up a phamplet on this. I am supposed to be the one in the house without sleep issues but I think I have some form of the parasomnias.I think I may have some form of hypnagogic hallucinations and sleep paralysis. I have many episodes where I think I am awake but actually dreaming. For a long time I though I was nuts and even started thinking maybe I was experiencing paranormal activity(but that is a whole other story!) Once I finally realized that this was going on I relaxed about it. It does make for some really interesting dinner party stories though! I don't think Hannah has this going on but always a possibility. She used to have night terrors as a toddler and maybe there is some hereditary connection going on.Something to definitely think about!
Heather--
TxStarDiesel
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