Hi there, I've just joined this web site and I am looking for some advice. I have a 6 yr old daughter who has OSA and had an NP airway from birth. She then went on to have a trachy and had this for 3 1/2 yrs until a year ago and she had to have a cartilage tracheoplasty and the trachy was removed. A sleep study showed she had moderate to severe OSA and she was started on CPAP and is still obstructing. She was originally put on BiPAP and this made her worse (basically every 3 breaths she wasn't taking a breath!). The doctors tried her on automated CPAP but this didn't work, it didn't deliver the higher pressure when she needed it and she still obstructed. She is on the full face mask as the nasal mask didn't work at all. Her pressure is 12cm and she is still obstructing but the doctors don't seem too bothered. Her sats don't drop too much (at the lowest 88-89%) but her heart rate goes sky high (100-110%). She is constantly wriggling out of the obstruction as she is struggling to get a breath and also does the reverse breathing thing. I don't know if I'm being a paranoid mum but I feel that this isn't right. Can anyone give me any advice? Thanks for your help.

Goodness!

Her doctors are not concerned with the high spikes of her heart rate?  And they're not concerned with oxygen levels that dip to 88-89%?  Maybe they're gauging their concern from an average, not the lowest oxygen.  But normal oxygen levels are in the upper 90's, not the lower 90's.  I'd be worried as well.  

If it were me, I'd want to see the data.  You said the auto cpap didn't work because it didn't deliver the higher pressure she needed.  Auto cpaps are usually set at a range of pressure, centered around the titrated pressure.  For example, if her pressure was determined at 12, they might make the range 10 to 14, as an example.  Auto cpaps record data, I'd be curious to see if it ever ran at a  high pressure than 12.  Maybe she  needs a higher pressure.    Has she had a full sleep study?  Typical diagnostic testing is in two parts:  the first testing for existence and severity, the second to test pressures for using cpap.

Do you know if all her apnea is obstructive?  The report from a sleep study should indicate if it's obstructive or central sleep apnea or both.  It's most likely all or mostly obstructive, from your description (and obstructive is the most common).  

She obviously has special needs due to  her surgeries.  I have to wonder if something like a VPAP might be of use to her.  As I understand it, that is a bipap or bilevel but with a timed mode (think it's called something else).  It's usually ordered for someone with Central sleep apnea, but it seems like it might be a possibility for your daughter's situation.  The VPAP can be run like a regular bipap or bilevel (bipap is a brand name for bilevel).  But in another mode, it will start the breathing after an interval.  But this thought is only me thinking out loud.  The important thing is to know for sure what pressure is needed to keep the airway open, and I'm not confident from your description that 12 will always do it.

Are you from the UK?  If you are, you might consider senting a PM (private message) to our forum member Daniel (Daniel is his username here).  He's from Ireland, but he is very familiar with the UK sleep study centers.  I think he runs another forum for your region of the world, for sleep apnea.  He might have some more local insights for you.  

But I feel you have reason to be concerned.  The good news seems to be that your daughter will use  her machine, that's a relief.  We just have to get the right course of treatment for her.  


Linda


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diane.noon wrote:

Hi there, I've just joined this web site and I am looking for some advice. I have a 6 yr old daughter who has OSA and had an NP airway from birth. She then went on to have a trachy and had this for 3 1/2 yrs until a year ago and she had to have a cartilage tracheoplasty and the trachy was removed. A sleep study showed she had moderate to severe OSA and she was started on CPAP and is still obstructing. She was originally put on BiPAP and this made her worse (basically every 3 breaths she wasn't taking a breath!). The doctors tried her on automated CPAP but this didn't work, it didn't deliver the higher pressure when she needed it and she still obstructed. She is on the full face mask as the nasal mask didn't work at all. Her pressure is 12cm and she is still obstructing but the doctors don't seem too bothered. Her sats don't drop too much (at the lowest 88-89%) but her heart rate goes sky high (100-110%). She is constantly wriggling out of the obstruction as she is struggling to get a breath and also does the reverse breathing thing. I don't know if I'm being a paranoid mum but I feel that this isn't right. Can anyone give me any advice? Thanks for your help.

Diane,

Hi & welcome. Your daughter is having a rough time OK.

First off, BiPAP isn't for everyone. It is a form of non invasive ventillation, as distinct from CPAP. Linda asks if you are from the UK...........if so I believe that BiPAP was probably prescribed because of additional respiratory conditions ??

Can you give more detail on the level of obstruction (AHI while using cpap). For a child's sats to drop to 88/89%, is very serious. OSA in children is not like in adults and is not calibrated quite as generously. For a childs sats to drop below 95% is serious and requires attention. Her brain should not be deprived of so much oxygen. Also, as Linda rightly points out, a racing heart beat for such a young child (during sleep) is not good at all. You are certainly not being a paranoid mum, but a very rightly concerned mum.

What type of specialist is dealing with your daughter ? From your post, I suspect someone not qualified in sleep medicine. Best results for your daughter would be through a paediatric hospital. The respiratory units in these hospitals are usually well versed in respiratory sleep medicine, but unfortunately are usually very busy (as in Ireland).

Please post back some more detail.

Daniel.


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The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)