To get my child on the emergency ENT list?

[Starlight19]

My child is 3 and has severely enlarged tonsils and adenoids (grade 3-4). She has was referred to the ENT consultant when she was 2 and has been on the waiting list for treatment for almost a year. We have also been waiting on a sleep study for almost a year due to having sleep apnea.

She stops breathing in her sleep every night. I have bought an oximeter and she regularly is in the80s when she sleep and can drop to the 70s during an apneic episode.

It affect her whole life and is having a catastrophic affect on her development. She isn’t getting any quality of rest due to the sleep apnea, she is failing to thrive as it is painful for her to eat (she is below the 0.4 centile), her speech is delayed and ahe struggles with excess mucus and saliva due to enlargement of adenoids and tonsils. She also regularly vomits in her sleep - I have watched her on the monitor. She seems to cough and have a panic attack due to difficult breathing with tonsils and this causes her to vomit.

I am at the end of my tether, I have tried to go private but I was referred back to NHS due to her age. Her whole development and quality of life are being severely affected. She is on the urgent list which currently is a year and a half waiting time.

I honestly feel this is an emergency case, how can I get her procedure expedited?

I have been taking videos, photos etc of everything. Can I put together a case and get my GP to forward to the consultant? I am so desperate.

The problem js that to even get on the list for removal the problems have to be severe so every child on that list will be in an awful position whilst waiting.

We did have to swap hospitals.for my son due to risk and one hospital had a 6 month quicker wait than the other. Could be worth asking

Get a phone appointment with your GP and say she’s falling asleep in the day and delayed developmentally - that should get her expedited.

Did changing hospitals allow you to keep your ‘place’ in the line from your first referral?

Hey @Hotchocolate2023 not sure if you saw my reply. I looked at the waiting lists in another hospital, however, I don’t know if this will put me to the back of the queue again.

Is she on the waiting list for surgery? Best plan is to call the consultants secretary and ask to be put on a cancellation list, explain the symptoms and results from your own sats monitor and ask for the sleep study to be done urgently. That will show the sats dropping overnight and I'm sure they will speed up the surgery after that.

My son was on urgent list for surgery for same issues still was a 3 year wait. Non urgent was 5 years

You need to find peadatric ent surgeon who will do it privately. They do exist but you have to hunt

Has she been see by ENT and is on the list for surgery, or waiting to see ENT? If she has seen them, did you tell them about the sleep apnoea? It does sound like it needs doing urgently. Regarding her development, try not to worry too much as I’m sure she’ll catch up.

I agree with@stressbucket1 . Calling through to the consultants has been the thing that worked for us. Definitely stress the sleep and developmental delay. We got a cancellation appointment a year earlier than we were told to expect.

Mine both had theirs out aged 4 for same reasons.

Best bet is call the secretaries and enquire about cancellations, mine magically got their theatre dates within weeks of chasing up 👀

Keep chasing via gp and phoning.
My dd waited for grommets and was really struggling. We had a hospital admission with it and they speeded her right up the list (unless it was coincidence).

Hi OP

This was us 3 years ago
Told needed urgent operation (within6weeks) .. 18 months later we were still waiting
My daughter couldn't talk, sleep apnea, loosing weight etc

In the end I complained to PALS (became 'that parent' but polite) wrote everything out and 6 weeks later she was on the operating table

Sometimes it comes down to who shouteth the loudest sadly

Update!

we have got the sleep study equipment. She had it last night for the first night of the study.

Sats were generally sitting at a constant 91-93 with drops into the 70s and 80s during episodes of apnea - there were even a couple of drops as low as the 40s!

What sort of reading should I expect to be given a diagnosis of severa apnea? Will this get her red flagged for T&A removal?

Hey @Merrow did you notice an improvement in developmental delay following the surgery?

My son had the exact same issues and from first GP appointment to tonsil and adenoids removal was about a year. He was 4 when he had his op.
the sleep apnoea escalated him up the list and the doctors seemed quite concerned about it.

Did you have any speech or developmental delays that were solved by the surgery? @Myself40

There weren't any specific developmental delays in DS1's case, but the consultant was very keen to have the surgery completed before he started reception because of potential impacts of sleep deprivation. I would say that I noticed a vast improvement in DS1's mood - I hadn't realised the effect of what must have been constant low level tiredness must have had on him. He was very noticeable less irritable and could go on his bike for longer distances.

That’s really good to know as my daughter gets tired really easily! Do you remember the sort of sats he was getting in his sleep study?

He didn't do a sleep study - the consultant was satisfied with my description of his sleep (very heavy snorer, moments where he seemed to stop breathing then catch himself again, tossing and turning to the extent he fell out of bed frequently). He said it sounded like textbook sleep apnea. I'm not sure if it mattered but I realised after the fact that the consultant seemed to be one of the leading in the North West, so might have had more confidence in signing off based on a description alone!

My son fell asleep in the waiting room whilst waiting for his ent appointment. This was enough to get him onto the urgent list as they witnessed his sleep apnea first hand. They were also concerned as he was underweight due to difficulties eating. He ended up having his tonsils removed a few weeks later, it was life changing for him

He had slight speech delay and his learning at school was impacted by him being so sleep deprived. He’s now doing brilliantly at school.

My daughter is really underweight too. She is so reluctant to eat much. Did his diet improve much after his surgery?

I’ve sent you a pm
op

Can’t comment on waiting list as not UK, but my very underweight 5yr old had hers out December, she literally eats double now. More energy (although always quite high energy) never had speech delay but had problems with making some sounds she was under SALT, they noticed a big improvement. Also just looks better, the bags under the eyes and tired/sleep apnoea look she had have gone. Many people commented how much ‘healthier’ she looks. I hope you get it soon, the poor kids who suffer with this it is so hard for them.

Re the sleep study, any periods of longer than 2-3 minutes below 80% would be considered severe sleep apnoea. Its not just how low they drop, but how long the drops last for and how quickly they come back up and how often they last for. Standard sats are 95-100%.
With readings like those, I would expect her to be pushed to the top of the list, but it will depend how many are also so severely affected. Hopefully when they receive your readings they will respond urgently.