Has anyone else had a child with sleep apnoea?

[PurpleSnake99]

My son (4) has sleep apnoea. I noticed it recently and it seems to be getting worse. He stops breathing momentarily every few minutes. He snores loudly. He has night terrors every night. He gets earaches every month or so. He's exhausted all the time. His behaviour has changed for the worse and he falls asleep regularly during the day.

I'm also exhausted and trying to support him whilst also trying not to fall asleep every day at work.

I asked a family member who is a paediatrician to come over one evening and we sat in his room listening to him sleep. He said it is definitely sleep apnoea, all the classic symptoms, said to take videos, book a GP appointment and ask for a referral.

Took the videos to GP who also said it is definitely sleep apnoea, however we need to understand the cause. Said he has large tonsils and a very narrow throat. Referred us to ENT and said they'll need to also check his adenoids.

I'm exhausted. My son is exhausted. How can I help him in the meantime? Apparently it can be a very long wait for an appointment at the moment.

Does anyone have any experience of this?

I know AIBU is not the best topic for this but I desperately need responses and when I last posted in the children's health topic for it I got very few answers. I'm just at my wits end. I couldn't drive to pick him up from a family members the other day as I was just too tired and could hardly keep my eyes open. I've just got him settled again after an awful night terror which consisted of him hitting me, screaming that he doesn't want the monster to eat him, with tears rolling down his face. It's horrible and leaves me very emotional and exhausted.

Any advice?

Yes my dc1 had this, it was miserable for all of us. He had his adenoids removed and it helped a bit, but it then turned out an allergy was also causing rhinitis which still caused it. Antibiotics for infected adenoids made a quick bit of difference before the adenoidectomy, but ours was all done quite fast, just a few months altogether from first consultant appt to removal.

My goddaughter had this and it’s no fun for anyone. She had to undergo a sleep study then was added to the list for tonsil removal very grudgingly as they said it might not help… I think she then had really bad tonsillitis a few times which seemed to speed things along a bit. She’s since had them out and had her ears cleaned out too as there was also compacted wax and she’s a million times better now. No more apnea and so much happier, doing far better at school now too.

Our DS had this and was vomiting every other day. I kept taking him to the doctors who couldn’t seem to find anything wrong until one day after a year the doctor actually looked at him properly and found he had huge tonsils and then we found out he was about to have a burst ear drum any day. DS had an operation to remove his tonsils and adenoids at the same time and grommets inserted. This immediately sorted out the sleep apnea, vomiting and hearing issues.

We went private using my husband’s work insurance at the time but it wasn’t easy as the insurance company tried to say it was a pre existing condition.

Also the adenoidectomy or any of his other extensive treatments never really cured his bad sleep, years later he still sleeps terribly and is regularly upset about it.

Yes it was awful. Also large tonsils causing many problems including stopping breathing as a baby. Pushed for removal at around 3 years old and no problems since.

Thanks everyone for the responses. We've been waiting around two weeks for an appointment with ENT now but haven't had anything through.

You could be in for a long wait depending on your nhs trust.

We waited over a year for our daughter's follow up ENT appointment and it was cancelled 😡

That's awful. We are both completely exhausted and he's struggling massively. Falling asleep at nursery (once in the garden). He's angry and has huge bags under his eyes. I desperately hope it doesn't take a year.

My son (now 20) had adenoids & tonsils removed at 10 years old and grommits put in both ears. Cured everything for him from sleep apnoe to noisily eating with his mouth open, darth vadar breathing that annoyed his brothers, and the nasally voice he'd got. He could finally close his mouth and breathe through his nose and he was genuinely excited to be able to do that as soon as he woke from the op!

Best friend’s son had this. Had his large tonsils removed and was like a different child overnight.

Could you go privately? We had a quote for approx £5000
we couldn’t afford that so are now waiting for a date for surgery
i feel like my DS’s apnea is getting worse as time goes on and really hope surgery will help. His tonsils are huge and he dribbles and swallows all night in between huge snores and pauses in breathing. It’s heartbreaking and extremely exhausting

I think the worry for us was also tonsillitis as with large and swollen tonsils it could prove to be very dangerous.

Hi all, my child has FINALLY got the sleep study home equipment.

She's been asleep about a couple of hours. O2 levels sitting at a constant 91-93 with drops into the 70s and 80s during episodes of apnea.

What sort of reading should I expect to be given a diagnosis of severa apnea?

Yes grandaughter, same symptoms but got her tonsils out and that solved the problem.

Yes my daughter had this - sleep apnoea, very tired and pale, skinny, permanently snotty… had her adenoids removed and she was a changed child. Hope you get an ent appointment soon, ours wasn’t too long a wait.

Yes my son had sleep apnoea aged 3 after a single bout of tonsillitis left his tonsils significantly enlarged and he also had glue ear with 10db hearing loss. He was booked in for a tonsillectomy and grommets and while there they found his adenoids were a problem so they whipped them out too. It was transformative. Immediate return to normal breathing and hearing, and he grew about 4 inches in the following six months, and just thrived in a way that he hadn’t before.
bless him, he is 21 now 💕

My son had this - he breathed heavily all the time and sounded permanent bunged up, was always tired poor thing.

He had his tonsils removed which were massive despite never having tonsillitis to our knowledge. His problems were solved straight away and he was like a different child!

I'm glad we pushed for a referral as the gp was initially reluctant due to him never having tonsillitis.

One night’s monitoring done and sats were consistently in the low 90s with regular drops into the 70s/80s and a few drops as low as the 40s/50s!!

How can I get a sleep study? I’m told my sons tonsils aren’t enlarged but he is exhausted, mouth breathes when he eats and sleeps. He is so pale and tired all the time 😞

My Grandson had exactly what you are describing.. large tonsils too and always tonsillitis.
Daughter took video to GP.. sent to ENT they saw the video.. age 4 he had his tonsils and adenoids out.. he was like a different child after.. Best thing ever.

My DS has sleep apnea and enlarged adenoids. We got the ent appt after about 4 months. They required other tests (hearing mainly) and now have referred for surgery. So it's now about 6 months but weve been told he's a priority and we will have the surgery within 2 months. I think if I had my time again I'd get a private consult to skip the 6 months wait time just to see the ent consultant to begin with, then refer back into the NHS lists.

We were referred to the paediatric respiratory nurse. Ask your GP to refer you and then keep ringing them!