Sleep Apnoea and Tonsillectomy

[vestachelles]

Hello All!

I'm brand new, so apologies if I am posting in the wrong place.

My three year old son has (we are pretty sure) obstructive sleep apnoea, probably due to his tonsils/adenoids. The apnoea is pretty bad. We've bought an oxygen sats monitor and have, a number of times, witnessed his sats fall into the 80s, and at two points to 78. We've filmed all this. He's tiny (3ys 7months and 12.5kg) and he's pale with dark, sunken eyes. His cognitive development is slow, and he's tired and emotional a lot of the time.

Anyway, after doing lots and lots of research, we want him to have his tonsils out, assuming a consultant agrees. He was referred to ENT last week, but they aren't due to see him until May, so we've booked a private consultation with the same doctor and we'll see him on Monday.

My main question, really, is about people's experiences of the process from there on. Assuming he agrees that tonsillectomy is the best route, can he just put us on the list or do we have to wait until the NHS initial consultation in May before that happens?

And how urgent is it anyway? I feel like it is, but what are people's experiences of how seriously consultants take sleep apnoea in young children?

And if it's all agreed and they go ahead with the tonsillectomy, does anyone know how long it might take to wait for the op? Has anyone's child had tonsillectomy for sleep apnoea fast tracked?

If the whole waiting process is going to take months we might have to bite the bullet and pay for the whole thing privately, but we can't really afford to and I feel like, given it's a breathing/oxygen thing with a child, the NHS should probably be doing something quite quickly.

Sorry I've gone on a bit. Please let me know your experiences of this.

My son had his tonsils and adenoids removed aged 3. We paid for private consultant who recommended this as he had sleep apnea, eating issues and constant illness. He would not operate in his private clinic due to lack of paediatric specialist care and access to blood if needed for transfusion. He referred us to his clinic at nhs
From there to the operation was about 3 months . I'm not sure if he was fast tracked in anyway- I don't necessarily think so.
My son had the op and we've never looked back. He's 8 now and so glad we did it

I hope you don't mind me asking- did you have to wait long for your ENT referral? Our DS has had three cases of tonsilitis in three months and the sleep apnoea (I think) is terrifying! Our GP is sick at the moment so I'm going to have to get the locum to refer I think.

Sorry for hijack! Started as a question and ended up as a rant!

From dd seeing a consultant privately to having her tonsils removed, again privately, was about 4 weeks.

She had apnoea too. Was 7 when the op was done.

The consultant was very convinced that they needed to come out. Adamant in fact. But conceded (post op) that unlikely to happen Any time soon on nhs - would have had sleep study and so on.

She tended not to get tonsillitis. But they were huge. She had stinky breath. Was tired. Snored like a train.

We had private medical insurance which paid for the consultations and the operation. Stayed overnight because the private list at the bupa hospital was in afternoon/early evening.

It's made a huge difference to her. I slept in her room for the first week or so after the op because I was pretty rigid about pain relief at set intervals as I wanted to preempt pain, and the first night after we were home kept checking that she was still breathing, because I couldn't hear her!

From the GP referral to private consultation was about a week. Very very slick.

Did you just ask for the referral? I've recorded him now in the hope that will help them understand

My dd had tonsils and adenoids out when she was 2. The longest wait was from the GP referral to ENT, which I think was a few months (this was a few years ago, can't remember exactly). Once we'd seen the ENT dr who confirmed she definitely needed it, it was only a matter of a few weeks before they went ahead, and that included it being put back a week or so because we were going on holiday.

I don't know how urgent they consider it generally, unless it is very obviously causing lack of oxygen. But in our case they didn't measure oxygen levels in any case, it was just based on the size of her tonsils, and our descriptions of her sleep disruption.

In general I don't think a private consultation will necessarily speed along an operation which is being done via NHS. But as its the same dr in your case, he may be able to fast track it but I guess it depends on how the system works. Or if he thinks it is urgently needed.

I find it amazing that people never associate private medicine's enthusiasm to carry out procedures with the remuneration that is received for doing so.

In the vast majority of cases the barriers that are there to getting procedures done on the NHS are there not to save money but to prevent patients having unnecessary procedures…..

It is exactly this situation that has led to the affluent American market who have good health insurance being one of the most over investigated/ over operated/ over treated groups on the planet.

Review here about paediatric sleep apnoea. You will need to sign up for a "free" trial of the BMJ to read it though.

www.bmj.com/content/340/bmj.c1918

Thank you all. I hadn't realised there had been do many replies as I didn't get an email for some reason.

Somebody asked how long it took for our referral. The GP instantly referred him as soon as I mentioned breathing problems, but the appointment isn't coming up for two and a half months.

Meile72, I was interested to hear your daughter's story. I don't know how many apneas my son has per hour, but we've filmed him having them. We bought an oxygen monitor, and so the video shows his sats dropping into the 80s several times during the 20 minutes we were there.

Lurkerspeaks, I can appreciate your point, and it's not something we haven't worried about, but I've read a lot of academic studies and nhs protocols over the last week and I'm convinced that tonsillectomy is the best option for OSA in children; the nhs is hesitant to perform the op for tonsillitis because, for the cost, the results aren't consistently good enough, but for apnoea it almost always helps.

My dd had sleep apnoea and had her adenoids and tonsils removed when she was 4yo. However she was already known to ent as also had glue ear so had previously had grommets.

They do take the sleep apnoea quite seriously ime and the wait wasn't too long between them deciding she needed the op and doing it (approx 2 months)

The op was slightly more traumatic than I had anticipated, dd was in a lot of pain when she came round and quite depressed for a week or so following it. However it was most def worth it, she slept better, ate better, was less tired and finally breathed properly!!

I know a child who had this done. It was pretty quick from referral to op but they did have to ensure a HDU bed was available for after the op. It was a great improvement for the child.

Tonsils and adenoids may not be the whole story.

You should also have his oral structure checked out. A high palate can narrow the post nasal apertures which can contribute to sleep apnoea.

Hi did you end up getting fast tracked just been told my daughter has it she's really struggling at night time she's had respiratory problems before and had a op. He's put it down has urgent and said it will be around 4 to 6 weeks also waiting on sleep study. I'm going out of my mind terrified had we nearly lost her when she was 1 she died for nearly 2 minutes. Anyway I was just wondering how long you waited I feel like 4 weeks is ages away when her oxygen is so low. I'm considering going private but can't really afford it and I suspect it probably won't be any quicker. How is your child now after the op? Sorry for rambling it's just a shock to me and I'm so scared I can't sleep for worry I'm like a zombie. She's only 3 years old roo 😢