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: 1031

Reply to This

Replies to This Discussion

Thankyu guys once again,so helpful and supportive . I think you're right terry i will c whatis said. Thanks kath i don't obv myself no yet what acceptable is,so would be very intrestin. So over 5 i'm lookn  for ? if under 4 i've no need worry? I will b askin about these ahi wen i go. If i didn't have the knowledge tha u have all give me,i wouldn't have been able ask these questions. Thank again,i'll keep lookin on se if anything new from the sleep tech. :)) T xx

Also do u think bedwetting is something ? As most morning he is drenched ..and he has been dry ages.

Also last nighthe woke in a state and he was shakin with fear was awful....

Nocturnal enuresis (bedwetting) has a big link with sleep apnoea Tracey + some adults are affected by it too.  Here's just one link of many http://sleepdoctor.blogspot.co.uk/2006/01/bedwetting-and-obstructiv...

Tracey, I was going to say the same thing as Kath, sleep walking is also a common thing with sleep apnea, when I was a child I used to bed wet and sleep walk and in the 60's and 70's no one knew about SA, I wish they did. It's basically to do with whats called the fight or flight response, when we stop breathing our brains kick in and panic sets in, blood goes to our hearts and brains, the bed wetting is just a response to the lack of oxygen to our brains. Unless he has another sleep disorder the shaking with fear as you described it is probably again not being able to breathe properly and waking ups gasping for breaths. I know you have the appointment and you need to write these thing down so you can take them up with the Dr. The positive of all this is you are aware of what is going on and he shouldn't need to live with this the whole of his life like a lot of us in the past.

i have no knowledge of another sleep disorder just what i'm witnessing..i used to wet the bed till i was 10. Back then my parents were relli harsh,they told me the eletric blanket i had would set on fire if i weed the bed,i had the charts al that crap. I don;t have sleep apnea btw but what i'm tryin say is if i ddnt know better id just be thinkin he a bed wetter like i was. But now it all links in? We have a stair gate on his door thankfull he can't open it.Have said all along if it wasn't on his room god knows what he b upto in night,scary to imagine,adults well i've hrd all sorts goin down makin food etc,driving there cars an stuff i mean it's just terrible what it can do. Scary thing of all it can cause death,weather ppl think its an over reactive or not! It true. I admire kath for all her work on this and the awarness bieng raised,as i for one never knew anythin of it before i had my son. t xx

Tracey, not everyone that bed wets has sleep apnea, it is just a response by our brains that something is wrong. I used to go and cook food and there would be nothing in the pot, one night my parents caught me as I was walking out our front door and I never remembered it. I know this is scary for you and duanting in some ways, you do have to try not too get too stressed and try to relax a bit otherwise you won't be able to help your son if you are over stressed and then not well. Something will evenually be found and he will get a treatment, have you seen the story of little Emill that Kath updates regulary. Like I said the good thing is now things can be diagnosed and treatments are available, that will be the next step.

good luck for Tuesday will check for your update

gosh did u,it's crazy stuff. I know i'm tryin not to as i do make myself ill so been tryin stay calm lol. Will c what tom brings nyhw. I havent heard about emill no? I'll have a look. t x

Thaks carol x

Sorry for the late answer Tracey + hope you see this before your appointment.  Make sure you ask his AHI + what his oxygen levels were during the study.  Take the video + show them + don't be afraid to show your emotions, to let them know how worried you are, and that this cannot carry on, and if they haven't a plan then you need to get a 2nd opinion!!  Good luck honey...... rooting for you tomorrow (Tues) + look forward to your update, with hopefully good news.....

Hi Kath,and thanks.  Only just seen this. I looked at the report + it made no sense to me, but i did ask about the oxygen levels etc. They were 97 per cent :) So good news is that it seems the op has worked, but bad news is they think he has nocturnal seizures?

Was there 3 hours today and they were great. Listened to me for an hour and read my notes etc. Got a second opinion and organised lots of tests. He had bloods taken today - not nice but he's had a lot worse, bearing in mind he's only 3!  They're arranging an EEG + ,said if it comes back positive we go from there, if it comes back normal it doesn't mean it is. So then he will have to go into hospital for an overnight study where they observe him etc.

They said what I've told them and what they think does not link in with sleep apnoea now. It's hard as sleep apnea can mimic other sleep disorders and vice versa. So although good news I still don't have the closure or the end to his sleeping problems. Hopefully we will get to the bottom of it and get him sorted very soon. Even tho it seems sleep apnea cured I probably shouldn't be on here anymore, but because you have all been on this with me all the way, I'd still like to update you with his progress. Thank you all very much, especially you Kath for all the support you have given. xxx Tracey xx

i'm so sorry fr ll the speelin it isn't me it the computer,hope u understand the previous haha
t xx

Don't worry about the spelling Tracey - I've just edited it for you, so that others can read it thoroughly.  I've not changed anything of what you've said - just the typos .

tracey clark said:

i'm so sorry fr ll the speelin it isn't me it the computer,hope u understand the previous haha
t xx

Now for my proper reply...... I'm away at the moment in London, but wanted to check on here to see how you got on Tracey, as have been thinking of you.  I know you still have a fair way to go to get your son on the treatment he desperately needs, but I think this is all very positive and you must feel relieved that the hospital are aware there is a problem that needs getting to the bottom of.

I'm no expert in this type of thing, but it's good to read that the operation appears to have cured the sleep apnoea.  If this is the case, do bear in mind what we've talked about before, and always be on alert in case it returns later on in life, which it sometimes does.  However, at the moment you have other issues to deal with, and I'm pleased you're keeping us updated. 

Although this is primarily a sleep apnoea forum, this is not restricted to just sleep apnoea as there are often overlaps with other sleep conditions.  I do hope you'll stay on here - at least until you get your son sorted, but you are welcome for however long you'd like to! 

It may be that he will still need to use some form of machine to help him sleep, and we can certainly help you with that if it involves a mask.  We also have other people on here with different sleep conditions - scoliosis is just one of them!

Also, other people who come across our forum may have other sleep conditions, so reading this will help them more than you'll ever know!  Also take a look at this discussion going on with another of our members, as she's being investigated for nocturnal epilepsy as well as sleep apnoea..... Nocturnal Epilepsy Discussion (in fact I've just seen that Paula was due back for checks on the 1st Oct, and I was thinking it was Nov, so I must ask how she's getting on).

You take care Tracey and know that we will continue to support you for as long as necessary, and we're very keen to get regular updates from you please

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 Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19
John replied to John's discussion evil mask noise
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
Oct 17
Jonathan posted a discussion

ResMed AirSense 10 getting noisy

HelloI have an NHS issued ResMed AirSense 10 with heated humidifier.  In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
Oct 16
Jonathan replied to John's discussion evil mask noise
"Hi My first question is why is condensation forming?  I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away.  I use a nasal mask, with the humidifier…"
Oct 16
John replied to John's discussion What's a good Apnea forum?
"11K+? Ok that's probably where I should look then :-)"
Oct 16
Kath Hope replied to John's discussion What's a good Apnea forum?
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
Oct 16
John posted discussions
Oct 16
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"There's some information here, but generally it's very common and likely due to our anatomy."
Oct 12

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service