NEED SOME ADVICE ON CPAP

[CAIDENSMOM77]

HELLO ALL...MY SON, WHO WILL BE 10 IN A MONTH WAS DIAGNOSED WITH SEVERE OBSTRUCTIVE SLEEP APNEA AND HAS STARTED USING A CPAP..HE WILL BE USING IT UNTIL JAN 6 2016. AT THAT TIME HE WILL BE GETTING HIS TONSILS AND ADENOIDS REMOVED WHICH WILL HOPEFULLY CURE HIS SLEEP APNEA...SO UNTIL THEN WE ARE USING THIS DREADED MACHINE WHICH HIM AND I BOTH HATE, MY BIGEST PROBLEM IS "RAINOUT" I CAN NOT STOP CONDENSATION FROM BUILDING UP IN THE STUPID TUBE, I DO NOT HAVE A HEATED TUBE, JUST A REGULAR ONE, HIS RESPITORY THERAPIST TOLD ME TO WRAP THE TUBE AND PUT THE MACHINE LOWER THAN HIS BED, LOWER THE HUMIDITY AND THIS SHOULD FIX THE PROBLEM...WELL IT ISNT WORKING HE STILL WAKES UP EVERYNIGHT AND TELLS ME WATER IS SUCKING UP INTO HIS NOSE THROUGH THE TUBE...WHAT AM I DOING WRONG? I CAN NOT FIGURE THIS MACHINE OUT TO MAKE IT COMFORTABLE FOR HIM TO SLEEP, ITS VERY FRUSTRATING FOR ME AND FOR HIM...DOES ANYONE HAVE ANY ADVISE OR TIPS THAT I CAN USE TO MAKE THE NEXT 2 MONTHS OF USING THIS MACHINE PLEASENT FOR HIM...AND HOPEFULLY AFTER SURGERY HE WILL NEVER NEED TO WORRY ABOUT THIS MACHINE AGAIN...THANK YOU!

[Julie]

Hi - you know your attitude about the machine will be passed on to your son, and if you feel it is 'stupid' so will he, but he needs it to stay well (alive) and it will help him to accept it if he sees you believe in it.

Second, it's been shown time after time that removing tonsils does NOT help - apnea is still present or returns within months but the surgery can create new problems with adjusting to Cpap then because anatomy has been changed. I urge you to get better advice, preferably not from someone who makes their living doing surgery.

We have many experienced and responsible people here with lots of good advice re OSA and Cpap and can help with issues re the machine, etc. (like rainout), but please go to the User Ctl Panel (small type under main logo) and fill in the most complete name of the machine possible, as well as what type of mask he's using and his pressure settings for the machine - that way we can all have the info up front auto. every time you post (it appears under all notes) and can advise better going in.

Also, unless you have an actual vision problem, please don't use all caps when typing - in internet language it means you're yelling at us... unless of course you meant to .

Have you put the machine at a lower level than his head btw? It does make a difference... but someone else here with more experience re the problem should respond soon as well.

[Pugsy]

Exactly which machine brand and model is he using?
A heated hose will make a huge difference in rain out prevention.
See what I say here in this thread about rain out...posts number 2 and 3 I think it is.
viewtopic/t94035/Pugsys-Pointers-3Deali ... -road.html

Wrapping the hose in something and/or lowering the machine will often help rain out in the hose but it sometimes doesn't offer much help if the condensation is in the mask if the water can't run out of the mask.

Get a heated hose if you can.

Tonsil removal if I remember right is considered usually first for pediatric OSA. For adults not so much.

[49er]

Caidensmom might want to take a look at this link regarding the success of Tonsillectomy to cure sleep apnea in kids.

http://www.sleepapneasurgery.com/overvi ... atric.html

It seems like a significant amount of kids are cured but there is still about 10 to 20% (depending on which statistics you believe) who aren't. The kids who aren't have other criteria such as a strong family history of sleep apnea, untreated nasal obstruction, etc.

Still, this site along with many others agrees that Tonsillectomy is the first line treatment of pediatric sleep apnea.

49er

Hi - you know your attitude about the machine will be passed on to your son, and if you feel it is 'stupid' so will he, but he needs it to stay well (alive) and it will help him to accept it if he sees you believe in it.

Second, it's been shown time after time that removing tonsils does NOT help - apnea is still present or returns within months but the surgery can create new problems with adjusting to Cpap then because anatomy has been changed. I urge you to get better advice, preferably not from someone who makes their living doing surgery.

We have many experienced and responsible people here with lots of good advice re OSA and Cpap and can help with issues re the machine, etc. (like rainout), but please go to the User Ctl Panel (small type under main logo) and fill in the most complete name of the machine possible, as well as what type of mask he's using and his pressure settings for the machine - that way we can all have the info up front auto. every time you post (it appears under all notes) and can advise better going in.

Also, unless you have an actual vision problem, please don't use all caps when typing - in internet language it means you're yelling at us... unless of course you meant to .

Have you put the machine at a lower level than his head btw? It does make a difference... but someone else here with more experience re the problem should respond soon as well.

[metsfan302]

what they all said above..... yea the negitive attitude toward cpap therapy will rub off on your child. make sure also the machine is lower then his head and your not over filling the humidifier

[metsfan302]

WELCOME TO THE FORUM!

ALSO fill out the equip info in the profile section

[CAIDENSMOM77]

MY CAPS IS TURNED ON BECAUSE I AM AT WORK AND ALL MY WORK IS DONE IN CAPS AND I DONT THINK TO TURN IT OFF...MY ATTITUDE IS FRUSTRATING BECAUSE IVE BEEN TRYING FOR OVER A MONTH AND A HALF TO GET THIS MACHINE TO WORK FOR MY SON AND IM HAVING NO SUCCESS...BEING 10 AND HAVING TO SLEEP WITH A MACHINE ISNT FUN...RESEARCH, 2 ENT'S, AND MY SONS PULMONARY DOCTOR ALL AGREE IN HAVING HIS TONSILS AND ADENOIDS REMOVED AS THEIR IS A 80-90% CURE RATE IN CHILDHOOD SLEEP APNEA, I DO NOT HAVE THE INFO ABOUT HIS MACHINE ATM AS I AM AT WORK I CAN PUT THAT INFO IN LATER THIS EVENING

[Julie]

Hi - sorry to have maybe steered you wrong about the surgery - there is another type that has bad outcomes, but this apparently does work for children. Hopefully it will work for him.

[CAIDENSMOM77]

IS IT NORMAL FOR HEADACHES TO OCCUR AND STUFFYNESS AND SORE THROATS TO OCCUR ALSO...MY SON, OTHER THAN THE SLEEP APNEA IS A HEALTHY NORMAL CHILD WITH NO OTHER ISSUES AND SINCE USING THE MACHINE HE HAS BEEN EXPEIRENCING THESE PROBLEMS..I FEEL LIKE IM DOING SOMETHING WRONG AND IM MAKING HIS ISSUE WORSE

[LSAT]

IS IT NORMAL FOR HEADACHES TO OCCUR AND STUFFYNESS AND SORE THROATS TO OCCUR ALSO...MY SON, OTHER THAN THE SLEEP APNEA IS A HEALTHY NORMAL CHILD WITH NO OTHER ISSUES AND SINCE USING THE MACHINE HE HAS BEEN EXPEIRENCING THESE PROBLEMS..I FEEL LIKE IM DOING SOMETHING WRONG AND IM MAKING HIS ISSUE WORSE

Stuffyness....possibly too much or too little humidity
Sore Throats.....Possibly mouth breathing

[Pugsy]

Stuffy nose and sore throats...
The stuffy nose possibly is related to the humidity setting...some people need more and some need less humidity. Quite common

Sore throat...probably mouth breathing which dries the mouth and throat out...again quite common.

Headaches..not so common unless related to mask straps being too tight or possibly the nasal issues causing a sinus type of headache.

We can offer more specific ideas on how to lessen the above once we know what equipment he is using and the settings that are being used...like which humidity setting and does his mask cover only his nose or does it cover both nose and mouth.

[CAIDENSMOM77]

I KNOW HE IS USING THE FISHER & PAYKEL ICON AUTO CPAP...HE USES A CHIN STRAP BECAUSE HE IS A MOUTH BREATHER, THE MASK ONLY COVERS HIS NOSE AND HAS A HEADGEAR...IM NOT SURE OF HIS PRESSURE, THE HOSE IS NOT HEATED BUT IVE WRAPPED IT WITH A LIGHTWEIGHT FLEECE BLANKET TO HELP THE CONDENSATION BUILDUP, I BELIEVE THE HUMIDITY LEVEL IS HIGH AT 7..I TRIED TO LOWER IT TO A 4 BUT I THINK IM DOING IT WRONG BECAUSE EVERYTIME I TURN THE DIAL IT IS STILL AT 7

[CAIDENSMOM77]

ALSO THE MEDICAL SUPPLY PLACE I GOT IT FROM NEVER TOLD ME I HAD TO CLEAN THE MACHINE, HOSE, HUMIDIFIER CHAMBER AND MASK...IF IT WASNT FOR THE INTERNET AND RESEARCH I NEVER WOULD HAVE KNOWN...SO FOR ABOUT 3 WEEKS MY SON WAS USING THE CPAP AND I NEVER CLEANED IT...NOW IVE BEEN CLEANING IT EVERYDAY AND DISINFECTING ONCE A WEEK

[Pugsy]

I have a heated hose for the F & P machines that is brand new still sealed in package.
I am pretty sure it will work with the Icon (at least from the looks of it and what I have read about it)...
I would be happy to send it to you free of charge if you will just pay postage.

It's this hose
https://www.cpap.com/productpage/fisher ... -hose.html
manufactured by A/G which is a well known cpap supply after market manufacturer.

[CAIDENSMOM77]

YES THAT WOULD BE WONDERFUL, IM WILLING TO TRY ANYTHING