Are we facing Adenoid/Tonsil removal???

[DaftMule]

DD has been sleeping poorly since she started teething about at about 10 month old. She's now 27 months and we have felt all along that there was something more to it than just teething. We had one of those movement sensor monitors and the alarm would go off fairly regularly indicating that she was sometimes stopping breathing.

She has regularly suffered from watering eyes from birth and she always seems to have a very runny nose...even by normal toddler standards. About 2 months ago she entered a phase where she was just producing really thick green snot for a couple of weeks and since then her night time breathing has become much, much worse.

When on her back or in the car seat, she stops breathing for short periods, and snores like you wouldn't believe. This is constantly waking her up. Having read the description of adenoid/tonsil problems leading to apnoea, it seems to be text book. Strained breathing where you can see the throat pulling in as she tries to draw breath, causing her to have to breathe through the mouth and then eventually stopping breathing completely, before a big snort/gasp and the whole cycle starts again.

She has just come down with a cold again and last night she had the worst croupy cough I've heard her have yet...even drawing breath she sounded ragged and would wake up with just the most pitiful cry before trying to sleep again. We had her on our bed in the end for fear that her throat was going to close up all together!

The weirdest thing though, is that once she is awake in the morning, she is bright and doesn't complain of pain...even this morning.

We are booked to see an ENT in a couple of weeks but we are at the point now where we get no sleep for worry and she is definitely getting worse. I have a feeling we are going to be faced with an adenotonsilectomy (or whatever it's called). The wife is going to push to see if we can bring the consultation forward.

Would really appreciate the thoughts of those who have reached the point of surgery with their child and how they reached that decision. Is this likely to be our only recourse? We don't want to get fobbed off AGAIN as things just can't carry on as they are. The wife and I are on the ragged edge of exhaustion alone and it has to be affecting the DD if she is waking constantly during the night.

It does sound like you will need to go down the surgical route. Dont worry though, they only operate if they really have to.
I would be really strong at the clinic. Take along recordings of DD's snoring and make a note of each and every apnoea attack. The doctors like that kind of thing. Makes you sound less like a panicy parent as well. Not that there is anything wrong with that mind you.

Good luck I hope it gets sorted soon for you and you can all get some sleep.

My DD had adenoids/Gromit insertion at 4 & 5 years old so I know a little of what you are going through.

I could have written your post a few weeks ago, and totally feel for you and your wife re exhaustion and stress/worry. Us, too.

The only difference for us is that dd2 has a floppy larynx, diagnosed when 8 weeks old, which adds to the noisy breathing and confused the issue for ages. When the virus season started in October, her sleep apnoea got a lot worse, quite fast. Looking back, I suspect her tonsils/adenoids grew a fair bit then too - and she's a tiny 2 yr old.

We saw ENT consultant in mid December, and he saw immediately her tonsils were touching in the middle...booked her in for adenotonsillectomy marked 'urgent', and would have done it the following week if there had been room for an 'airway' case like her. As it was, she had them out a week ago on the 13th Jan - and although recovery is rough in terms of pain (and therefore exhaustion for us!), her breathing is SO much better I could weep.

She can lie in one position for hours, breathing evenly - yes, she's still snoring a bit, but thats to be expected after surgery and with her laryngeal issues. I listened to a recording dh made of her a few weeks ago, and its horrendous looking back.

Sleep apnoea is the main reason for taking tonsils/adenoids out these days, so I don't see why ENT would seek to dodge it for a minute - try and record her on a bad night, so you have 'back up' evidence if needed!

Wishing you the best, and anything you or your wife want to ask/know, feel free to ask me here or CAT me.

Just to add - we actually ended up in A&E in December when her eating got so bad she lost weight. They endorsed using Otravine nose drops during colds (you can get them over the counter) and I told them we were also using Medised to help her sleep a bit through the discomfort (she breathed better when calmer) and they had no problem with that either. In the words of the paediatrician 'whatever gets her, and you, through to surgery day'.

Worth trying Otravine (we put it in an old, washed, nasal spray bottle instead of using dropper - then we could use it when she was asleep) when your dd has a cold, as a short term measure. Obviously not to replace surgery, but to help her in the meantime.

Sorry, one last post - she may have croup atm too, which is scary for any child; good thing to have her in room with you, but do try humidifier if you haven't already. Ours helped dd's breathing for two whole years prior to surgery, even when not croupy or coldy!

Thanks for the replies. Just spoken to the wife and our doc has come back to us in the last hour to say they want DD in for the night tonight to be under paediatric supervision so they can see what's going on. A relief to feel that something is finally happening and that, hopefully, we can get some answers.

Eli...good to hear that the op is worth it. Feel guilty that we may be putting her through an op when the adenoids tend to shrink anyway over time. But, also feel guilty that DD may have been suffering for ages with this and we haven't been pushy enough to get something done sooner!

Ah well....hopefully we will have a little more light shed on the situation by this time tomorrow.

Ah yes, those guilty thoughts sound familiar and of course, irrational too

FWIW, several professionals have told me that 2yrs is the optimal age for this operation, faster healing etc - and also, any younger and you can't be sure the tonsils are going to grow that much, apparently. So I think you've done just right.

Glad you're getting some feedback very soon, do let us know what they say!

Also, have since found research about sleep apnoea potentially affecting development and growth, so waiting for them to shrink (not before 6 or 7, if they do) which I originally thought we should have considered more, would really not have been an option for dd.

Not to mention her not eating properly

Thanks for the additional advice Eli....

We are using Calpol/Neurofen for DD. Have Medised but she hates the taste...don't blame her as it's a weird, oily sort of taste. I shall look at getting a humidifier....sounds like a good piece of kit.

If it comes to an op, we do have private medical from my work so that is always an option if an NHS slot is not available for ages.

Thats good

Interesting that the doctor is recommending overnight obs....perhaps ours didn't, because dd fell asleep on way to appointment, and was doing her worst kind of breathing right there in his office. Fairly conclusive!

Yes, humidifier also good kit for post-op recovery because dry air is very sore on mouth-breathing throats...

Hi, I'll join in too. My DS underwent the op last tue, lke ELibeans DD for sleep apnea. Again we have experienced a very very simlar story. DS was taken in overnight for a sleep study last sep/october time.
All that happens is a finger or toe probe is attached when they drop to sleep, and a capnograph probe to measure CO2 levels. A meachine measures levels overnight, and alarms everytime the levels of o2 drop too much, or they stop breathing. DS's confirmed sleep apnea and he was offered a date for around 3 weeks later for removal of tonsils and adenoid.
Unfortunately DS also suffers from chest problems and he missed his op due to being too unwell. Last week was the third date he had been given and Elibean says it is a hard slog for all the family.
1 week on nights are still quite bad because he is waking frequently. His snoring has just started to get quieter so hopefully once all the swelling goes we will notice a big difference.
x

Fingers crossed for a return to peaceful nights for you soon Lubbly.

Well, we took DD in to hospital yesterday avo to see the emergency paediatrician. We took the camera with us and DD fell asleep in the car on the way so we took some vid to show the doc which was a real help.

Anyway, the doc didn't want to keep DD in after all. He was very good tho, very reassuring, and recognised that there was definitely an apnoea issue and that she had a pretty chunky set of tonsils. He has written to the sleep study dept and told us to go to our ENT consult as per the appointment in early feb. Sounds like the sleep study might not happen for a while as the places are quite limited.

Good to get the reassurance and we will await the ENT consult and sleep study to find out if surgery is required. Probably going to take a few months to get to that position but hey....we've been living with DD's poor sleeping for most of her life so what's a few more months!

A more long term perspective here. My Ds2 was just like your dd at the same age. I used to lie in bed listening to him snoring and wheezing. His tonsils were huge. He saw ent consultant a couple of times a about 3yrs. He was very anti tonsilectomies and was adamant that he would grow out of it. He didn't and after many years of schooling interupted by tonsilitus including a bad bout during his gcses he finally had them removed at 17. It would have been a much simpler operation had it been done when he was younger. By the time they were removed they were really badly scarred and always had white spots and permenantly met in the middle. The ent surgeon who he saw at 17 was surprised they hadn't been removed sooner. Not saying that surgery is the answer for every child but it would have certainly been better for my ds to have it done sooner. It certainly would have helped not to have tonsilitus during his gcse exams.

I'm glad you got some reassurance, DM, that does make a big difference to keeping on coping for a couple more months!

We found once we had the op in the pipeline, it was easier to cope..it didn't feel as though it was going to go on forever, iyswim.

And we too filmed dd in the car en route to the ENT man - though as she stayed asleep there, we did'nt need to use it. We look at it now and are amazed at the difference

Thats good news that they are taking you very seriously.
I hope you get it sorted out soon. Dont feel guilty if an operation is needed. It is far better to get it sorted out long before you have to worry about school etc. Alot of children do not grow out of these problems.

Just to update my post here, we went to see the ENT consultant back in feb as planned. She took one look down my dd's throat and said that her tonsils were enormous...nearly meeting in the middle. She said she would put her forward for the op even though she was under 3.

We also had a sleep study done a couple of weeks ago. Based on the results, the doc in the hospital said they wouldn't rush to do the op as her oxygen sat's were OK and only dipped down once in the night! However, she woke up several times during the the night while she was in for the study as she does every night! Good to know the apnoea is not serious enough to be putting a lot of strain on her heart etc due to lack of oxygen but it did leave us a little confused about where to go next as it seemed to contradict the ENT consultants diagnosis a bit!

Well, anyway, we got the letter a few days ago to say she has a slot booked for the end of the month for the op so it's all going ahead based on what the ENT consultant saw...and they should know best!! So we wait....and hope to god dd doesn't catch another cold at the end of the month! She's got a stinker at the moment so her sleep is even more shot to bits than normal and she sounds like a junior version of Darth Vader when she breathes atm!!

Good news, DaftMule, and I remember worrying about catching colds and cancellations too...they told me that the op would only be cancelled for a raging fever and/or nasty cough, they tend to go ahead with a cold as long as they don't suspect chest infections.

Hope the days pass quickly, those pre-op weeks were the worst for us - soo much better since!