Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Hello,have just found out my 3 yr old son has SA :((

Hello all. 
My son is 3 and has always been a poor sleeper from birth. He has had numeouros health problems,from bronclitis to asthma
We recently got referred to ent bcus he had glue ear. 
I mentioned his sleepin how poor it was,and that he sleep talks. Alway tired,and behaoiur is hard work in the daytime. 
So arranged a sleep study. 
Results was sleep apnea. 
Least seconds stop breathing was 15 most being 90!! Numerous times. 
They are goin to take his adenoid and tonsils out in the next 6 weeks. 
I'm bloody petrifed tho,now set up camp in his room to watch him. 
Is there anythin i can do?? 
Also anyone out there with kids simalir age? Can u offer any advice,exp etc. 
Thankyou. 
T x 

Views: 994

Reply to This

Replies to This Discussion

She said she would download and send that day..I'm still waiting. I have rang 4 times. He been really bad past 2 nights playing up again...night of sleep study slept soundly all night. I'm so anxious to get those results now.  I just want to know. 

t xx

No wonder you're anxious Tracey.  Keep ringing until you get a satisfactory response.  Fingers crossed you'll hear something very soon.....

well i got results todat,but only spoke with secretrary. He has wrote acceptable,and will discuss it with me at our next apt end of novemeber. I shud be feelin relived? but for some reason i'm not. 

t x

i know i prob over thinkin things. But like would there of been a diff readin if he had the sleep study other night when he was screamin and up all night? Night of study he slept soundly. Dont feel like i got the clousure i needed on this yet. if u understand me 

t x

Can understand how you're feeling Tracey.  Remember the secretary won't be able to tell you the whole story - like when you ring the ward when someone's in hospital and they say "they had a comfortable night" and when you arrive you find it's a different story.  See what they say at the appointment and then tell them just how bad it really is most nights.  Don't give up until you're happy that he's sleeping peacefully.  Carol and Leisa will vouch for this, as they had to keep pushing for their kids too!

Hi tracey acceptable to me is debatable as why didnt he write normal ? To me it sounds like there was still elements that were noted but perhaps he feels it isnt enough to treat were his levels at 90 - 92 for long the reason I ask is often as an impatient on the ward they would administer oxygen if levels were like that for extended periods .

I think if you are seeing that he is clinically showing symptoms from lack of good sleep and his study shows nothing to drastic it may be that the events he is having is infact having a profound affect on him 

I would ask for an explaination of what acceptable means and what his Ahi was it may be it was 4-5 thus in there eyes not meritting treatment 

Jaydons studys always showed a different picture we took a video and emailed the dr who instantly wanted him to be seen due to obvious obstruction that the data didnt show as like you we had a fab sleep in the lab and you are right the more unsettled he is the more likely there data would be different to one of a full rested sleep

thanks ladies for your replys,i just don't feel happy from that phnecall,and my instincts tell me diff i think.There has been lil imporovement we ave had some good nights but he is like i said still doin same things. 

Kath you're so right in what u say. I don't understand why it's so dam hard to get proper explantions anyway it's my child and they mess us abt it relli frustraing . 

Carol...i'm not sure what you mean when u say ahi?? i don't know what that means? Also when u say I think if you are seeing that he is clinically showing symptoms from lack of good sleep and his study shows nothing to drastic it may be that the events he is having is infact having a profound affect on him sorry if i sound thick there but confused to what you are saying?

I think thats a very good idea what u did with jayden,i said to my partner i'm gonna keep a record of his sleep from now till the apt. And video it wen he is relli bad. 

T xx

To

Carol,it was 90/92 for i'd say few hour. I know they administor it for thoses levels as he has been in hossi numerous times for asthma. And adminter it to him...

Do u think i shud push fr his apt sooner?

If they're saying it's 'acceptable' then they might not bring the appointment through earlier Tracey, but no harm in trying.  Meanwhile, I would definitely try to get some videos of his sleep and try to reveal his chest/stomach areas in the video so they can see what's going on.

When Carol mentioned AHI, it is the score they use and means Apnoea/Hypopnoea Index = how many apnoeas/hypopnoeas per hour.

What else is confusing with children is that they don't always show low oxygen desats, even though they are having apnoeas.  This is why the Pulse Oximeters are only a guide, and should not be used as the sole method of diagnosis.

When you speak to others whose children have had their tonsils/adenoids removed, the parents usually say how much better their children sleep once they've recovered from their op, which has a knock-on effect during the day.  However, it seems that you're not experiencing this, so keep pushing....

Hi Tracey

Sorry sometimes I talk in medical jargon and assume everyone knows what I'm on about  apologies

Ahi ...its a index that they use to determine the amount of apnoea and hypopneas per hour of sleep 

Mild apnoea is 5-15 events in each hour of sleep

Moderate 15-30

Severe greater than 30

the next part I meant that even if his study shows he is within normal ranges but his symptoms are like someone with severe apnoea or isnt getting restful sleep then he may be more sensitive that the average child 

Im not a medic but his O2 levels though not drastically low in there eyes if for a few hours each and every night may be enough to cause him symptoms and as you say if they use oxygen on wards why should they leave him at home with levels that would warrenty O2 supplementation if in hospital.

Is he chronic asthmatic ? Reason I ask is cpap can be used to treat asthma in children

You could ask if there is a sooner appointment or put his name on the cancellation list 

Or would his consultant do a telephone consult?

Ahh see i never knew this Kath thanks for that info..wen i go i shall be asking to see the report and about these AHIs. This forum is great for me,as i would of just been like oh rite ok Not knowing about half of it so thankyou all . 

He has been up at 4am and then falling asleep on the floor at home then found him asleep in his toy car yest so its defo having a knock on affect on him. shame. 

Carol i understand you know lol. Thankyou.

I have tried get thru today but no joy grr..i shall see if i can request a phone apt good idea. 

He is chronic asthmatic yes. He has been in and out of hospital since 5 month old last stay over being 2 months ago for 2 nights. Never knew he could have a cpap for it tho something i will bring up so thanks

t x

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Jonathan replied to Iain Noble's discussion Resmed Airfit F20 Woes
"Hi.  No first hand experience, but you can see reviews here, which are mixed: https://www.cpap.com/productpage/resmed-airfit-f40-full-face-cpap-mask I notice cpap.com still appear to be selling the Quattro FX.  I have imported stuff from…"
Apr 28
Iain Noble posted a discussion

Resmed Airfit F20 Woes

Dear FolksI have been using the Resmed Quattro FX mask ever since I was diagnosed over 7 years ago.…See More
Apr 28
Iain Noble replied to Becky Murkin's discussion F20 AirFit small marking bridge of nose
"Hi All I can say is I feel your pain! I got the F20 as a replacement this year and it is very uncomfortable. I have just ordered the new Resmed F40 which is very small and light and so far it has been a lot easier to use for a mouth breather that…"
Apr 28
Sarah Martin is now a member of Hope2SleepGuide
Apr 27
jjimjam updated their profile
Apr 17
Kath Hope replied to Becky Murkin's discussion noisy humidifier normal?
"It sounds like you're getting rainout issues (condensation) so here's an article to help with this. www.hope2sleep.co.uk/water-in-the-mask-hose-known-as-rainout"
Apr 16
Becky Murkin posted a discussion

noisy humidifier normal?

Hello,I have an air sense 10 auto.When I have the humidifier and the heated tube plugged in it makes a sort of drumming noise. Like that at the gallows in films.Is this normal? It wakes me up  and I have to give up and switch off  for the night.See More
Apr 16
John posted a discussion

Dentists in Hull that know about Mewing ?

I was wondering if there are any dentists in Hull who know about John & Mike Mew, and changing jaw shape over time?I could add that I saw an ENT consultant recently and she said jaw shape, malocclusion, is genetic, which has become a debatable…See More
Apr 9
Profile IconKaren Mcleod, Fiona Watson, Teresa Hobbs and 5 more joined Hope2SleepGuide
Apr 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning.  The machine sat on a tray because of…"
Mar 26
John posted a discussion

Nasal valve collapse

Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
Mar 24
John replied to John's discussion Airsense 10 -humidifier runs dry
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
Mar 24
Becky Murkin posted a discussion

F20 AirFit small marking bridge of nose

Please help or give advice all wise people on here.I have had the Resmed F20 AirFit small mask for over a month. Seals yet…See More
Mar 19
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"A very helpful reply Jonathan. I found the pressure setting for the full face mask to be too high when I changed to a nasal mask, but perhaps I should have persisted? I'll try again and I'll also discuss with the clinic whether an APAP…"
Mar 13
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Ramble alert!  My history is that I spent part of each week at a different location, so bought a second machine identical to my fixed pressure NHS machine and set it up to match using the clinician menu.  This was a very long time…"
Mar 12
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Thanks Jonathan - I had seen the YouTube video. My question is really about the experience of people who have control of their pressure settings, for example those people who have bought their machines directly and not obtained them through an NHS…"
Mar 12
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"This is NOT a recommendation http://www.youtube.com/watch?v=VNUWhd2UgQM"
Mar 11
Frances Knight posted a discussion

Air Sense 10 - changing pressure settings

I have been successfully using my air sense 10 since OSA diagnosis, and my AHI is now under 2. I had an appointment with my clinic this week and have been told there is no need for further appointments and just to contact them if I need supplies or…See More
Mar 11
Swen Greve is now a member of Hope2SleepGuide
Mar 4
Jonathan replied to Sue Reeves's discussion A few questions..
"If you have a helpful GP, I would ask them to re-refer you to the sleep clinic."
Mar 3

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service