[tri-med] Re: PH & Apnea

----- Original Message ----- 
From: <taraforte
>>I have since?made an appointment with a pulmonologist.? Olivia is not on 
>>oxygen while awake.? Her sats are great.? However, her cardiologist has 
>>suggested putting her on it at night to help with the PH.? Her oxygen has 
>>been dropping out at night.? I am not familiar with sleep apnea but I 
>>think she may have a touch of it.?

This is sort of easy and its hard.
Kids with T-18 often suffer with sleep apnea and thats possibly why you are 
seeing her sats drop at night and then come back up. Apnea is the cessation 
of breathing for more than 15 - 20 seconds with a subsequent drop in 
saturations of 15% or greater.

There are three types of sleep apnea and our kids can have all three. 
Central apnea, which in short is where the brain forgets to tell the lungs 
to breathe. Obstructive apnea, which is where there is sonething blocking 
the air from getting to the lungs. That could be anything from small 
airways, enlarged tonsils to a floppy airway. And lastly there is mixed 
apnea, which is where there is a combination of both.

The good news is that usually (but not always) they will grow out of it in 
time. The bad news is that it can be life threatening. It can however often 
be treated until they grow out of it.

I can go into a lot of detail as to which type is what etc but until you 
know what type she has (or if she has it) then its probably a lot of 
information to try and understand. To determine if it is sleep apnea and 
what type they will need to do a sleep study. This means sleeping in a 
clinic with a lot of wires and stuff. A technician monitors her breathing, 
brain waves, blood pH etc all night and from that they can determine what 
sort of apnea it is and often whats causing it.

You can do a quick and easy "guess" at home. If she snores when she sleeps 
it could be obstructive. If her chest is still moving when her sats drop it 
could also mean that its obstructive This is the easiest to treat. If she 
actually stops breathing (no chest movement) when her sats drop and then her 
chest starts moving when her sats come up its possibly central. Of course 
mixed means both.

Treatment depends on what type and on the doctor. This is where it will pay 
to ask questions. When Alex was a baby he suffered from severe apnea and it 
was mixed. He was treated with C-PAP. (Continuous positive airway pressure) 
This is a machine that forces the air into the airways past the point of 
obstruction. He didn't tolerate it well so in the end we had surgery to 
improve the air being able to get in. This didn't fix the central apneas so 
he went onto Bi-PAP. This is a machine like a C-PAP but it has two pressures 
(Bi-level positive airway pressure) one for inspiration and one for 
expiration. He tolerated this very well and best of all the machine would 
only cut in if he stopped breathing for more than 20 seconds. So he was able 
to breathe by himself and only use the machine if needed.

We were totally forbidden to give Alex oxygen. Oxygen is a drug and if a 
child suffers from central apneas oxygen can make it worse. Imagine the 
brain saying OK I am getting 100% oxygen and I only need 95% so the brain 
tells the lungs not to work so hard. Thats OK except you turn up the oxygen. 
The brain says OK I am still getting enough oxygen so don't work so hard 
lungs and so the lungs respond by breathing less often. The problem is that 
by breathing less they also arent getting rid of the carbon dioxide and too 
much CO2 makes the blood acidic. Eventually you can get to stage where the 
brain says don't bother breathing at all. The child is pink because they are 
full of oxygen and yet their blood is totally acidic because they havent 
expelled the CO2.

Thats why you need an expert to diagnose apneas and to treat. Oxygen is 
often needed with heart problems and yet too much can make apneas worse.

During the sleep study they will measure her CO2 levels with a capnea 
monitor (not normally done at home as a capnea monitor is a lot more complex 
than a sats monitor). They will probably also take some blood. This will 
tell them if her blood is acidic then they will weigh up whether or not she 
needs C-PAP, Bi-PAP, Oxygen or a mixture. (You can put oxygen through a 
C-PAP or a Bi-PAP)

Your job will be to learn about the type of apnea she has (if she has any) 
and then ask the questions :-) Then you have to live with the machines and 
thats a whole other issue. The good news is that PAP is usually only used 
when sleeping.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (14 years, T-18 Mosaic)
http://members.optushome.com.au/karens



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