omg...snoring DS 12yrs old...wwyd?

[whatthewhatthebleep]

My DS has had grommets 2 times when much younger and I think his adenoids were scraped on the 2nd time around when he was 5yrs

So he has always had a bit of snoring going on but the past year or so this is got so much worse!
His snoring woke me up the other night and I recorded him for about 6minutes

It's really bad and he seems to have trapped air all the time....his chest rises and falls but you can see he is struggling to breath and then at times seems to not get the air in at all for a few seconds, etc. I tried to adjust the way he was lying but it made no difference, I've tried to change his pillow arrangement but this hasn't helped either.

I've brought the subject of his snoring a few times with our GP but he has done nothing to address this at all.
I'm concerned this has a lot to do with why he is so tired and washed out...he never wakes feeling refreshed and is slow to get going in the mornings. I really wonder that this has become a problem and needs looking into properly.

He has ASD/ADHD and many different issues at the moment...this is another thing I am worrying about now. He seems to stop breathing and seems to be fighting for the breath in iykwim

How do I get our GP to take me seriously...getting nowhere with anything at the moment...gggrrrrr

[frizzcat]

What - that sounds like sleep apnia (I'm prob spelling that wrong). Basically your throat closes slightly when you sleep and your nose takes over - but if the nose is blocked he can't breath. His brain then kicks in to wake him up so that he starts breathing through his mouth. This would happen a number times through the night and your ds would have no knowledge of it - and yes he would be exhausted.
Get yourself to the gp and ask him for a referral to the sleep clinic and ENT. My ds had this and had adenoids and tonsils out which sorted it for him.

[frizzcat]

Can you take a video of your ds - so idiot gp can see it?

[whatthewhatthebleep]

yes, that's what I was thinking...Aponea Apnia (sp?)...he does seem to be struggling when I was watching him...he just stops completely and his chest is still trying to rise and fall but stops short of being able to...there are several seconds of nothing and then he grunts and the snoring continues on...it was constant when I was recording....I kept trying to disturb him and make him move to a different position but it didn't help and just kept going. Eventually he opened his eyes and moved a bit and then resettled but later I heard him start up again

I could try video of it but wonder if would be too dark to view it...try it tonight again and see if I can put enough lights on to see better.

GP seems reluctant to do anything I've been asking about...have CAMHS involved but GP seems to keep deferring to them for decisions and then nothing happens there either.
I've spent the last 4 weeks trying to get someone to address anything I'm asking about...nobody is willing to take a lead role and do anything...I'm getting really pissed off now tbh...always the same isn't it....

[frizzcat]

This is a medical condition nothing to do with asd or camhs - anyone can have this. Phone the pead and tell them you need this referral as ds is not breathing in his sleep - if she does the referral then dandy, if she says GP has to do it then ask them to phone GP prior to your appointment so they can't defer to camhs

[frizzcat]

And yes it is always the same - like these kids can only have things that are related to ASD

[SallyBear]

Whatthe. Ok. You need to see a Respiratory Specialist. My dd is under gosh. She is 12 too. They will do a sleep study overnight. Give you the report and then talk options with you. Quite often the reason for the sleep apnoea is because the tongue falls back and obstructs the airway. This is called obstructive sleep apnoea. My dd obstructs for about 2 minutes every hour. It causes huge headaches in the morning, moodiness and bring tired during the day. She now uses CPAP (continuous positive air pressure) which is delivered through a mask that she wears over her nose. The air is warm and humidified. She hated it to start with but now says that she feels 100% better. School work has improved, behaviour and growth have all been positive because of the CPAP. If you can get referred to GOSH please ask for Dr Francois Abel in the Respiratory Team.

[porridgelover]

Def sounds like sleep apnoea.
Frustrating when they wont diagnose the ASD to start with and after, everything is about the ASD. Grrrr

[whatthewhatthebleep]

we are in Scotland...never had a Pead that I know of???...just psychiatrist for the ADHD to monitor meds...very little else over the years.

So many issues that have never been addressed and have left my DS crippled with severe anxiety and now on meds for this, not attending any school because he just can't cope with anything now. He's in his bedroom (sanctuary) barely speaks to me, won't talk to anyone else, very frustrated and angry at drop of a hat over anything he perceives as difficult (even having a bath is a nightmare I can hardly manage with him to do)...permanent egg shells here...

Sensory overload, food restrictions ridiculous and getting worse, fucking disaster for my DS...I'm so low and nothing is happening anywhere to help either of us...I'm so fucking angry now in between my tears and I want to just run away from everything...go live in a caravan with my DS and fuck the whole lot of them that are supposed to help and never have.

They are deciding on a specialist residential school now....It should never have bloody got to this stage though...should it....hate the shitty system we are all so trapped and left high and dry by.
I'm losing my son and I blame this fucked up dreadful system and nobody ever really helps...piecemeal, no lead person taking any steps forward, my DS left struggling, bullied, suicidal, uneducated due to all his issues and difficulties and nobody giving a damn.....
I need to rant ...sorry ...the snoring is just another bloody thing it could take me months of hassling to get anywhere over...I'm so tired and feeling defeated....seen GP 4 times in 4 weeks and where are we...nowhere...just nowhere, I don't even think the stupid man has read my DS file to familiarise himself with us....never mind addressed anything on my list of things I went to him with 4 weeks ago

How do you get anyone to listen...ever....I'm so at my last tether with everything

Sorry, I've gone from snoring to ranting madly

[frizzcat]

Rant away - it is shit and you're not alone. Can anyone go with you to these appointments? Sally seems more clued up than me - my ds issues aponia were picked up by ENT who could see the problem in his throat. Basically tonsils three times and no longer functioning because of over compensation for the problems in his nose. If your ds is not resting properly during sleep then it can cause a whole host of issues from the sleep dreprivation- depression, lack of appetite, mood swings, lack of coordination, anxiety, lack of concentration to name but a few - but from what you've said you experiencing most of this already. If there is no pead involved with your ds then how did they dx ADHD? If there is no qualified medical doctor involved in the CAHMS then GP can't defer to them because a psyc can't deal with a child who stops breathing!! Also I can't see any residential school taking a child who stops breathing in his sleep

[whatthewhatthebleep]

this is part of why I have been wanting this list of outstanding things looked at and investigated...it's no use identifying a school and then they turn around and can't support things that come out later on down the line...it would just mean total upheaval and my DS back home and having nothing again.

I wish I could get any of these so called specialists to look at the whole picture and issues need investigating so the situation is as clear as possible in being able to go forward in the right bloody way...I'm not getting anywhere though.

The Panel meeting takes place on the 24th to decide whether to fund residential placing request. This is very likely to be passed but without a full understanding of my DS issues...how can a school even be found and applied for...it's all backwards to me and setting DS up to fail even further.

Imagine he starts a new school and we have been through all those associated hoops with the admission and everything and they have to retract the placement offer because they discover they can't support fully on things they were not made aware of....disaster situation is what I see for DS...it's all wrong like this...

ach, I'm just a parent... worrying eh...maybe it will just stumble along and I'll be picking up the pieces later...same old really...I suppose I should be used to it by now really.

[whatthewhatthebleep]

I've phoned and left a message that GP please phone me...he isn't in til tomorrow afternoon so will wait and discuss again when he phones me back.

Got psych appt on thursday so will clarify who is going to do what and hopefully get some action and referral done between them both....fingers crossed my words will make some difference this time.

[SallyBear]

Where is your nearest good hospital? The big ones will have a respiratory consultant and they will be able to do a sleep study.
A sleep study will consist of various probes worn on the body and a video camera. Don't accept just a SATs probe worn on the finger to show OSA. It won't.
I think that you need to go back to the GP, park the ADHD and ASD and the school places panel as that's clouding things. Speak just about the snoring. You can see the obstruction as their chest works really hard, they're silent and then suddenly gasp for breath. Explain about any headaches he has and bad temper, plus if he has any narcolepsy episodes.

[whatthewhatthebleep]

could I make contact directly and refer DS myself though to a respiratory specialist?
We have The Sick Kids Hosp in Edinburgh as our destination for anything...could I just phone them do you think?

[frizzcat]

No harm in phoning and then at least if they say they need GP referral you can get the name of the proper consultant - then all the GP has to do is the letter of referral. I swear half the time they don't do referrals is because they don't know who they should refer to! Also be clear to the GP that you're not backing down!

[SallyBear]

Looking at it, I think that it's Glasgow Yorkhill where you want to be going. here
You cant self refer, but if you can present a good case to your GP and who you want to see then the GP will write a referral letter for you. I would try and see if you can speak to a clinical liaison nurse from the Respiratory Medicine team and explain your DS's sleep issues. Then say that you want to see a specialist bit you're not sure who deals with sleep study.
www.nhs.uk/chq/Pages/1094.aspx?CategoryID=68&SubCategoryID=158here NHS rules.

[whatthewhatthebleep]

just phoned the hosp about it...we could present into A&E and take our video of the issues (thinking about doing this)
Or we need a referral through GP or other clinician

I'm going to try the video route and take it to the hosp myself...maybe things can happen faster this way.
ENT seems the right department so really think I might just go ahead with this myself....might save a lot of waiting time

Roll on tonight and I'll sit waiting for things to happen...poised with phone to record it all....hope I get him settled before midnight though...long night ahead me thinks!!...he can easily be awake until 1 am and later and this is with melatonin...joy!!!...be worth it though if things can be addressed properly from it.

[frizzcat]

Fantastic - name change to Steven Spielberg - raiders of the lost sleep

[whatthewhatthebleep]

hahahaha

It would just be good to be able to take action on something at least

set up my directors chair and clapper board for 1st take

I'll update tomorrow on whether I manage to capture enough evidence, etc....

[BallyGoBackwards]

My DS had the exact same problem. Sleep apnoea. My GP referred us to a ENT specialist. We were in his consultancy rooms for about 10 mins only. He said the first step was to take his tonsils and adenoids out. Didnt need any evidence, He booked us in the following week and the job was done.We went semi-private. We have never looked back, the difference to my DS was unreal. My DS has ADHD too but that was a totally different issue.

Best of luck!!

[whatthewhatthebleep]

I got some good video twice last night...he really seems to be struggling to get the air in...his torso really heaves like his diaphram is working really hard to get the air in but isn't managing it iykwim?

I wanted to wake him because he looked like he was struggling so much...about 20mins later he woke up...so now thinking this is disturbing him more than I realised before too...he's a bad sleeper as it is, so adding this to the issue won't be helping either...

Going to see GP on Friday...see how willing he is to refer...I'm not impressed by my GP so I have no expectation of good services...never happened yet!!...it's a complete pain because I can't change my surgery either...out of catchment for anywhere else it seems

[BallyGoBackwards]

Thats really awful OP. I knew that my DS snored alot but it wasnt until I shared a room with him on holidays that I realised how bad the situation was.

Obviously I dont know your GP but I would sort of go in saying "I am here for a referral" and be as demanding as possible. It was different for us because we lived in Ireland then and as there is no NHS you pretty much have to go private/semi private to have anything done in a reasonable time frame.

Hope it goes your way tomorrow. Let us know.

[whatthewhatthebleep]

Hooray!!....GP is doing a referral for ENT
Just need to wait now for appt to come through

[SallyBear]

That's fab. Please make sure you talk sleep studies with them.

[frizzcat]

Woohoo!

[BallyGoBackwards]

Well done