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Down Syndrome Children Sleep Apnea
97% of children with down syndrome have sleep apnea:
Diagnostic overnight polysomnograms of 33 children with Down syndrome who snored were reviewed. Mean age was 4.9 years, none had had adenotonsillectomy, 91% were non-obese (Down syndrome specific body mass index standard deviation score (BMI SDS) <+2.0) and yet 97% demonstrated obstructive sleep apnoea, with an average apnoea hypopnoea index (AHI) of 12.9 episodes per hour (normal <1) and an average oxygen desaturation of 4%. A higher AHI was associated with lower minimum Spo2, higher Tcco2 and higher number of arousals from sleep per hour (p<0.001). Polysomnography should be a routine investigation for children with Down syndrome who snore regardless of body habitus. (excerpted from http://www.ncbi.nlm.nih.gov/pubmed/17449523)
Diagnostic overnight polysomnograms of 33 children with Down syndrome who snored were reviewed. Mean age was 4.9 years, none had had adenotonsillectomy, 91% were non-obese (Down syndrome specific body mass index standard deviation score (BMI SDS) <+2.0) and yet 97% demonstrated obstructive sleep apnoea, with an average apnoea hypopnoea index (AHI) of 12.9 episodes per hour (normal <1) and an average oxygen desaturation of 4%. A higher AHI was associated with lower minimum Spo2, higher Tcco2 and higher number of arousals from sleep per hour (p<0.001). Polysomnography should be a routine investigation for children with Down syndrome who snore regardless of body habitus. (excerpted from http://www.ncbi.nlm.nih.gov/pubmed/17449523)
Views: 475
Replies to This Discussion
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Permalink Reply by Jeffrey Donaldson on
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I work in the area of special needs transportation. I have always noticed that Downs Children most often sounded like there breathing was through a very small airway and that many of them fell asleep while going into and home from school a lot more often than the others. Now, it all makes sense.
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Permalink Reply by sleepycarol on
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I have wondered how many special needs kids though actually would benefit from cpap. I think the numbers are high for this given group, regardless.
I know that I have read reports that many ADD and ADHD kids have sleep apnea and once it is taken care of the symptoms of ADD and ADHD either clear up or are greatly reduced.
I teach special education and find that many have other factors involved besides their primary disability.
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Permalink Reply by RockRpsgt on
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I have also read this carol. They say that it is because fatigue has the oposite effect on children than it does adults. I will see if I still have the study for you.
sleepycarol said:I have wondered how many special needs kids though actually would benefit from cpap. I think the numbers are high for this given group, regardless.
I know that I have read reports that many ADD and ADHD kids have sleep apnea and once it is taken care of the symptoms of ADD and ADHD either clear up or are greatly reduced.
I teach special education and find that many have other factors involved besides their primary disability.
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Pam I have done some research on what you said and found that the FDA does not decide who gets CPAP. It is the individual insurance companies that now decide. The FDA took PaP therapy of the experimental list which put it back in the hands of the insurance companies. If you are having trouble bipass your Dr. and go straight to your local DME. From what mine said they might be able to help you.
Pam said:I find it interesting that it is recommened to get these childern with Down syndrome on CPAP at an early age. I whole heartedly agree, and I wish the FDA would see it this way. Recently insurance companies quit paying for the rental of CPAP machines in younger children because it has not been approved, nor is it recommended.
My three year old son has Down syndrome and has been on CPAP since he was 1 yr and a half due to his obstructive sleep apnea. We recently had to come up with the funds to purchase his machine since our insurance company would not pay for it anymore. The results of our son not being on CPAP are catastrophic. His apnea was so bad that it caused the right side of his heart to enlarge and his pulmonary pressures to sky rocket. Had he not been able to go on CPAP at the time our only other alternetive would have been a Tracheostomy.
http://www.theflockofbirds.blogspot.com
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Permalink Reply by Mike on
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presume it was only on an experimental list for children/ children with Downs Syndrome and not for the general adult population at large?
Rock Hinkle said:Pam I have done some research on what you said and found that the FDA does not decide who gets CPAP. It is the individual insurance companies that now decide. The FDA took PaP therapy of the experimental list which put it back in the hands of the insurance companies. If you are having trouble bipass your Dr. and go straight to your local DME. From what mine said they might be able to help you.
Pam said:I find it interesting that it is recommened to get these childern with Down syndrome on CPAP at an early age. I whole heartedly agree, and I wish the FDA would see it this way. Recently insurance companies quit paying for the rental of CPAP machines in younger children because it has not been approved, nor is it recommended.
My three year old son has Down syndrome and has been on CPAP since he was 1 yr and a half due to his obstructive sleep apnea. We recently had to come up with the funds to purchase his machine since our insurance company would not pay for it anymore. The results of our son not being on CPAP are catastrophic. His apnea was so bad that it caused the right side of his heart to enlarge and his pulmonary pressures to sky rocket. Had he not been able to go on CPAP at the time our only other alternetive would have been a Tracheostomy.
http://www.theflockofbirds.blogspot.com
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Not sure Mike. I do know that it is mainstreaming into most insurance companies. Not sure when it was taken off the experimental list, or for whom. second hand to me. I have only been doing this for a year, but I still get stories from patients about how hard it has been to get thier insurance companies to pay for the treatment.
Mike said:presume it was only on an experimental list for children/ children with Downs Syndrome and not for the general adult population at large?
Rock Hinkle said:Pam I have done some research on what you said and found that the FDA does not decide who gets CPAP. It is the individual insurance companies that now decide. The FDA took PaP therapy of the experimental list which put it back in the hands of the insurance companies. If you are having trouble bipass your Dr. and go straight to your local DME. From what mine said they might be able to help you.
Pam said:I find it interesting that it is recommened to get these childern with Down syndrome on CPAP at an early age. I whole heartedly agree, and I wish the FDA would see it this way. Recently insurance companies quit paying for the rental of CPAP machines in younger children because it has not been approved, nor is it recommended.
My three year old son has Down syndrome and has been on CPAP since he was 1 yr and a half due to his obstructive sleep apnea. We recently had to come up with the funds to purchase his machine since our insurance company would not pay for it anymore. The results of our son not being on CPAP are catastrophic. His apnea was so bad that it caused the right side of his heart to enlarge and his pulmonary pressures to sky rocket. Had he not been able to go on CPAP at the time our only other alternetive would have been a Tracheostomy.
http://www.theflockofbirds.blogspot.com
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Permalink Reply by Carolyn Lamb-Miller on
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I have a 10 month old with Down Syndrome. She has repeated episodes of Obstructive Sleep Apnea every night. (I have observed this many many times). She was 9 weeks prem, and was ventilated fo 27 hours, and on CPAP for 3 days.
We have asked her paed for a Sleep Study, but the waiting list is huge. It could be over a year before she gets in.
She also suffers from frequent respiratory infections requiring hospitalisation, oxygen, steroids and/or adrenaline. Our local hospital agrees that a sleep study should be done. When she is in hospital, her oxygen levels repeatedly have dropped down to the 70's then go back up to the 90's several times a night.
When she was 6 weeks old she had a bronchoscopy done which showed mild laryngomalacia. She also had a modified barium swallow that showed she was aspirating. These were done after it was shown that she was having apneic episodes when feeding, with her sats dropping into the 50's.
I am considering buying a CPAP machine (which is what we would have to do here in Australia), so that she doesn't spend the next year or so suffering for something we could help her with now. Do you have any advice on this?
Thanks,
Carolyn
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i would not let my child suffer if I could help it. Contact a sleep lab to let them know your intentions. You might find some support. Do not give up! Someone will help you. If you can't find anyone locally I will help you via this site. get a fully data capable machine. post the results daily. look at the nasal masks as a full face mask for your child.
Carolyn Lamb-Miller said:I have a 10 month old with Down Syndrome. She has repeated episodes of Obstructive Sleep Apnea every night. (I have observed this many many times). She was 9 weeks prem, and was ventilated fo 27 hours, and on CPAP for 3 days.
We have asked her paed for a Sleep Study, but the waiting list is huge. It could be over a year before she gets in.
She also suffers from frequent respiratory infections requiring hospitalisation, oxygen, steroids and/or adrenaline. Our local hospital agrees that a sleep study should be done. When she is in hospital, her oxygen levels repeatedly have dropped down to the 70's then go back up to the 90's several times a night.
I am considering buying a CPAP machine (which is what we would have to do here in Australia), so that she doesn't spend the next year or so suffering for something we could help her with now. Do you have any advice on this?
Thanks,
Carolyn
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I made some inquiries today, and it turns out that to buy a CPAP machine in Australia, you have to have a prescription! I have found only one hospital in Brisbane that does sleep studies on babies, and they only take public patients, which means it will be free, but a long wait. Their current waiting list is til around the end of January. My GP sent a referral through to them today. I really don't fancy having to wait so long though!
Do you know whether it would be possible to buy one from the states and have it shipped over? Or do you have to have a dr's approval first there too?
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You need a script here as well.
Do you know of anyone that has a cpap? In theory, of course this is just a theory, someone with a script could use it to purchase a "spare" apap. That machine could be "stored" at your house. When it is "stored" at your house, well you can use your imagination.
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I think that they would be less likely to do the trachy than to give us a CPAP. I think CPAP would be enough, it's just the waiting for a sleep study. We were told January at the earliest, unless they assess her as being urgent, which hopefully they will!
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