Enlarged adenoids

[MissB93]

Hey everyone 👋 looking for some advice/reassurance/just somebody to speak to.

I’m UK based (Scotland) and my 3.5 year old daughter suffers from enlarged adenoids and sleep apnea. This has been going on for around 2 years with her symptoms worsening. Symptoms include pauses in her breathing which honestly scares the life out of me. I’m barely sleeping with worry. GPs haven’t been much help but have been referred to ENT now thankfully.

I wonder if anyone has been in this situation? Any idea on current wait times? Ent suggested another sleep study.

Thank you all x

My DS was referred to the hospital (NHS Scotland) because of loud snoring/sleep apnea when he was 3 (about 8 years ago) - the consultant took one look down his throat, commented on his 'massive tonsils' and put him down for a tonsillectomy straight away. No sleep studies done.

Everyone who did the 'what's his name/dob' bit when he was in asked "so has he had a lot of tonsillitis then?" to which the answer was never!

Once he was under anaesthetic, it was discovered he had huge adenoids too so they got taken out as well. His speech increased massively after the op especially when talking while walking - don't think he could manage it pre-op!

It was only a few months between referral from GP and the operation but obviously that was a while ago.

@CatNeedsFed wow, that’s interesting. Thank you. Did you find it scary when he had apneic episodes? Did you find anything that reassured you during that time? I’m currently going without sleep, the longer we’re waiting the more sleep I’m not getting and it’s starting to effect my day to day now.

We are going through this my ds is almost 6 but this has been going on since he was 3. He was referred to ENT by GP straight away but the consultant wanted to wait thinking he would 'grow into' his tonsils/adenoids. During lockdown it went away as he wasn't picking up any colds but we have been through the most awful winter, constant colds since September and at times pausing in his breathing multiple times a night which constantly woke him up. I had to take a video of him sleeping so the consultant could see what was going on so I would advise you to do this for your appointment with ENT otherwise you will have to go back again with one. It has to be 2 mins in length and they need to see your child's chest so they can determine what level of apnea it is. We are now on the waiting list for an op but to be honest they are not keen on doing it these days, my ds has problems with his hearing so the op is more for that to have grommets fitted and they are going to check his adenoids at the same time !

@chickenbeak sorry to hear you’ve waited so long for something to be done about it!

I think that’s why our 2020 sleep study came back okay - lockdown, very little colds and she was much younger.

ENT have agreed to surgery but that will depend on the sleep study, whether it shows apnea. I have a few recordings and videos of her sleeping but I didn’t know it had to be 2 mins long, I’ll do that tonight - thank you. At the moment we’re having more pauses and grunting than we are normal sleep and she is exhausted through the day.

I’ve contacted our consultants secretary, she isn’t in today but will give us a call tomorrow. Hopefully I can get a rough timescale or something because we can’t keep going on like this.

I'm in Ireland, my son had his enlarged adenoids removed at 3.5 years based on us saying he had sleep apnea and the fact that he was waking hysterical every 30-90mins for 2 years. We didn't need to wait to have a sleep study done thankfully. He actually didn't improve after the surgery, other underlying issues and an understandable fear of sleep and emotional issues because of it took a long time to lessen and work on.

@Garman I’m really sorry to hear this. Awful thing to go through as a family

@MissB93 I think I just tried to keep the faith that he would eventually wake up with a massive snore or a splutter. Once I knew the op was coming I was probably more anxious then (because someone medical had decided something needed to be done).