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Happy new year hope 2012 you all breath easy :)
Hi
Been absent from the boards for a few months life is so busy
Travis has Bilateral Vocal Cord Palsy which is intermitant he is due to get a NG tube on the 18th if that doesnt work we will be trialling CPAP
Jaydon had a psg in Nov that showed no significant obstruction so we are now looking at his lower airway and immune system as well as CF however Im not convinced I think he has OSA caused by his upper airway he has sever harrisons sulci
I videoed him napping today any comments appreciated ......is my gut instinct correct and I need to push them to review this do average 2 year olds breath like this when sleeping ???
Carolanne
Views: 188
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Oh Carol, no wonder you're worried. Perhaps our good friend and expert Rock might see this. I'm no expert and not trying to be, but keep pushing and ring up to see if your email has been received.
carol murphy said:got a daytimenap video I notice 4 mins into video his neck sinks in at same time as chest any ideas why ?
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Permalink Reply by carol murphy on
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just updating my post for anyone who reads it through searching jaydon had tonsils adnoids and revised supraglottoplasty in June 2012 and 25th September after the data on his psg showing no real issues again video footage showed him clearly obstructing (thank god for video) and he started Cpap so gut instinct was correct and his study results werent true to his visual breathing
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Thanks for the update Carol and thank goodness for a mother's intuition, which is is normally the case, proves correct. Take a look at this post where we're waiting for news about Tracey's son who had his tonsils removed and is about to go for a 2nd sleep study - again, because the 'mother' persisted. http://hope2sleepguide.co.uk/forum/topics/hello-have-just-found-out...
How's Jaydon doing now he's on CPAP?
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Updating again for those that search for information Jaydon has been on cpap a pressure of 5 for now we need to increase to 8 but will be a gradual process
We are on week 6 and the difference in him is astounding his utter daytime exhaustion and his inability to function has ceased he is no longer emotional. aggresive, so tired he dragged his body and often almost slept standing up !!
It has been a case of gradual desensitization and as the weeks pass the longer he uses it without wakening previously 2 hour intervals last night was 5.5 hours
Cpap has been a complete life changing experience for the good
The sleep deprevation made his character ugly through no fault of his own he is now thanks to cpap funny happy and engaging
It has been a long road to get to this point and throughout it all my instinct was right so If my advice would be if you think something isnt right you are probably correct and keep fighting until you are heard
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