Sleep apnoea?

[Madmussells]

Hi all, I've posted before about my emotional, grumpy, very tired looking 5 year old son. I'd really like some advice on what to say to the Dr on Monday.

Ds is not napping at school and he does run around, but lies down quickly complaining hes tired and cant keep up with other boys even though he's average to tall.

He's had blood tests that show nothing really bad (luckily) although his ferritin was only 20 which some say is borderline, and very low blood sugar despite having had breakfast.

The Dr said he would redo blood tests in 3 months (around now) but wouldn't refer or do anything else unless school writes to say it is affecting him at school.

He's a bright boy so not really affecting him academically but they say he's anxious and have signed him up for ELSA. Teacher is happy to write to Dr as they say it's always worse at home. I've often got a bruise from one of his meltdowns. I don't get cross, I know he can't help it and he's so embarrassed afterwards.

Now Im wondering about Apnoea. He's always snored. He always wakes in the night 2-3 times (not good for anyone). In January I had a video of him pausing breath for about 10s in his sleep but my phone got stolen and I lost the video. I've been trying to get another one but no more Apnoea, just HORRIBLE breathing (which I've videoed) - sucking in stomach, ribs, neck and half-waking about 3 times a minute at some points. But he seems to be able to sleep okay sometimes on his side.

I did mention this to the Dr last year who was quite dismissive as it is not constant. But it is every night for a good chunk of time! He said to maybe get a nasal spray? Perhaps allergies or a cold. But DS has had this his whole life. He looks soooo tired despite sleeping from 7.30- 7am every night.

Please does anyone have any advice?

Get him to an ENT consultant to check his ears, adenoids, tonsils, sinuses etc.

Do I just ask the GP to refer me? Is the above enough to justify it?

I’m in Ireland so not sure if it’s different, yes I requested a referral and paid privately so it didn’t really matter what my reasons were for wanting it. Gp disagreed with me that it was necessary actually but was very, very wrong.

Ah, okay. I wonder if we will need to find out about going privately then. My husband is reluctant and thinks he'll grow out of it.

But I've felt crap myself after low iron crept up on me and then was a new person when it was treated. I hate to think he's feeling as rubbish as I was (for whatever reason) and is just getting on with it :(

Sounds very much like sleep apnoea. Ask for a referral to ENT to have his tonsils out.

I suspected this and was fobbed off for two years. Eventually I just demanded to see the ent. Ent tried to fob me off but I demanded an x ray and low and behold his adenoids are huge.

Did he have his adenoids out? What age? Did they insist on nasal sprays etc first?

Did he have a constant cold? I'm listening to my son now. Hes always bunged up. I think he has never smelt anything!

one of mine had sleep apnoea at 4, we got quite a speedy referral to hosp from the gp, and had managed to take a good video of him stopping breathing / gasping / semi - waking overnight. It was such a quick appointment, the consultant started asking us questions, we whipped out the laptop and showed him the video and he said straight away that the tonsils / adenoids have to come out. So, surgery a couple of months later, the surgeon said the tonsils and adenoids were massive. His moods massively improved; he used to have meltdowns at breakfast time, that completely stopped. Good luck :)

We are on the list for adenoidectomy. We didn't have to have a sleep study, just an X-ray of his head to confirm.

Mine had an adenoidectomy, didn’t need grommets, didn’t have an abnormal amount of colds.

Was the adenoidectomy solely because of sleep apnoea?

This is interesting. I have no idea if the GP will even refer me but I'll keep the xray in mind.

What symptoms did your DC have that made the GP not think it was an issue but made you push for it?

Yes, and the knock on affects it was having.

His eyes have huge bruises under them all the time, he's always got a runny nostril, his pronunciation of certain sounds is bad (he sounds like he's in the midst of a very bad head cold), I suspected he couldn't hear, ENT said no issue there but I pushed them and we've had glue ear confirmed. He is very very irritable and has huge angry outbursts most days although we are almost certain he is ND. I fought it for 2 years and my gp just kept telling me that some children do just look Ill and gaunt but it's mainly because he's not seen the actual gp ever. They won't see him in person and he was a covid baby. Even our ENT appointments have now switched to telephone. I dread to think how many serious issues are being missed because of this.

Whenever I have spoken to any health professional about it they tend to start asking me questions like "and are you often anxious about his health?" Well yes because no one will bloody listen! And I've been proven right so HA!

My DS had sleep apnoea and was referred to ENT. Similar concerns of extremely loud snoring, generally restless sleeper and woke a lot and very obvious stopping breathing followed usually by a big snore which would bring him out of it. We did have to have a sleep study, not sure if that was based on age or trust policy, he was 2.5 at the time. This confirmed moderate sleep apnoea and he had his adenoids out, said his tonsils looked fine so they left those. They'd said his adenoids were huge though. His apnoeas would last for ages and sleep study confirmed his oxygen saturations would regularly drop to low 80s when he was in deep sleep. All completely resolved with the adenoidectomy though and no issues since

I guess that I'm just not sure. A few months ago, I thought it was Anaemia and now I'm convinced its because of apnoea.

Were your children ALWAYS grumpy or just sometimesHei just don't kniw how bad it needs to be before we should do something. My husband thinks I'm over reacting (although he's not the one who gets hit and bitten).

He had a meltdown in the supermarket today. He's just been crying at a sad TV show. He obviously looks exhausted. He'll gladly go to bed. Never any arguments. He'll fall asleep instantly, and snore, and wake up.

I just don't know if I'm making it into an issue. Maybe he's just a bit more grumpy and tired than other boys. Or maybe he's an absolutely amazing little boy who's doing brilliantly while feeling shit most of the time! How can we tell????

Sure just get the referral and see the consultant to rule it out so at least? You don’t have to go in there with a list of why you think he has XYZ.

Mine has had anemia that won't respond to supplements too. There are several papers that link adenoid removal to resolution of iron deficiency anemia but they're not really sure why - does the iron deficiency cause the enlarged adenoids or vice versa? But having them out could help.

Poor little sausage. Your GP sounds pretty useless. I’d definitely want an ENT referral and then a sleep study.
(DD had severe sleep apnoea as a baby - she’s gradually grown out of it but is still monitored with annual sleep studies.)

I would definitely try to catch it on film while he is sleeping, then choose the worst section of film (as it goes in episodes during different phases of sleep), and show it to your gp and insist on a referral. The film of my 4 year old stopping breathing for 10 seconds then doing a gasp, stirring, sleeping and the same again and again made a really persuasive argument. The change in moods afterwards (especially in the morning) was dramatic.

It goes in episodes? That makes more sense. I thought maybe his isn't too bad because sometimes I go in and if he's lying on his front or one side, he's alright. If he's on his back or the other side, he's usually struggling.

We can hear his sudden gasps when we're downstairs watching TV.

My son had big tonsils, snored loudly, was often tired and grumpy, and held his breath in the night. That was enough information for the doctor to refer us to ent. There, they looked at his big tonsils and listened to me tell them about his breath holding, and they took his tonsils and adenoids out just over three weeks later. I couldn't believe the speed of it all, he was 5 nearly 6 at the time btw.

Since the op he eats so much more, is brighter, happier, less tired and shot up in height

Yes, it definitely goes in episodes; and is worse when lying on the their back, or if lying flat with head low down (so you can try propping your dc up with more pillows which might reduce things a bit). But definitely take some film of the worst bits..

If his appetite picked up and he started growing, was he small for his age? My DS is always hungry and is average/tall so it doesn't seem to be affecting his growth.

The GP was just so dismissive of it last time that I'm questioning it and not feeling confident about Monday.

One thing the GP thought was it might be allergies because when we were camping in France, I said DS didn't snore. However, I've since found out that I sleep through his snoring: We've been trying to help him stay in bed by taking turns sleeping in his room so he gets used to being in bed all night. When it's my turn, I wake up every now and again in the night to see him moving about in bed but I don't hear him snoring. My husband on the other hand says the room shakes!