Five year old with poor breathing due to enlarged adenoids

[HairyMaclary5]

My five year old is struggling with enlarged adenoids and tonsils.

We were recently referred to ENT who conducted a sleep study but said they won't operate to remove the tonsils and adenoids because the sleep study results were okay.

However, she continues to have sleep apnea, has very loud laboured mouth breathing which results in tiredness and then over-tired behaviour. When she gets a cold (which happens frequently) she suffers terribly for weeks, with snot like I have never before witnessed!!

The restless sleep (and possibly lack of oxygen) also seem to be affecting her hair which is thin and even appears to be broken off in places on the back of her head.

Has anyone experienced anything similar? Any advice?

I'm really surprised they made her have a sleep study, I think most areas don't require it after 3yo.
For my DD2, she had sleep apnea since she was a baby and we started asking about getting tonsils etc out she was 3 and went to the gp with a sound recording of her sleep which included a 10 sec pause between breaths (so complete lack of breathing rather than laboured breathing), and the ent agreed and we finally got a spot when she was 4.5. She breathes fine in her sleep now but still is super grumpy sometimes unlike my other two children.
My DS had numerous problems due to his tonsils etc and had a sleep study shortly before he turned 2, where they said it was severe obstructive apnea and should be operated on ASAP but he had a small fever during the sleep study so they booked him in the following week. Within the week he got a cold and his airway basically closed up so he was sedated and put on a ventilator for 3 days, and had to sleep on the hospital for a further 3 weeks until he was well enough to get his op.
Not much point to my tiny violin story but I do get its frustrating, but I think they are looking for lack of breathing rather than laboured breathing. Have you tried getting a recording of your DC's apnea?

Hello. My ds had the sleep study in March and it was deemed OK, however they put him down for tonsils and adenoids out because his tonsils were very large and he often complained of trouble swallowing. The consultant said that alone is a good reason to have the operation. He's just had them both out almost 6 weeks ago and he's like a new boy! Maybe you could mention the swallowing thing?

Hi. My DD is 5 and has had two sleep studies for sleep apnea which both care back clear. But because she does snore, is a mouth breather they put her down for surgery. I got a second opinion to make sure I was doing the right thing and they said she sounds like there is an obstruction because she sounds like she has a cold every time she speaks (school commented about mispronouncing words due to it). She had the operation yesterday so waiting to see if it's made any different. The key for her surgery was that school had picked up on her nasal speech x

I had the same with my DD at around the same age and fortunately got the removal surgery , please push as much as you can to get the surgery , for my daughter it was an amazing difference, snoring instantly stopped , no sleep apnoea, less throat infections and general colds illness , even her voice changed , her speech was much clearer.
Try to Record videos of her snoring , i did this , record every illness and length of it etc , my daughter was also quite underweight before as Eating and trying to breathe was not the easiest, some of these problems I didn't even realise until after the surgery and could the difference in her, so try to list out every problem that may be associated. Hope you get the issue resolved.

Thanks everyone for your helpful advice - it is much appreciated!

Beemybaby -oh dear, what a shame you have two children who are affected by this! Did you feel on balance it was worth getting the op done then? I know what you mean about them being grumpy - mine definitely is, and can be short tempered and overreact to little things. We did take a recording of her snoring, which the Dr wasn't even interested in listening to, but not the apnea. Will definitely try and get this, although GP won't re-refer us to ENT just now anyway unfortunately, so we are kind of stuck in limbo!

bobstersmum - how old is your son? That's helpful that he was able to explain to the Drs about his trouble swallowing, I guess that is a major reason to have them removed. My daughter does seem to struggle with eating in that she tends to shovel a lot in her mouth, and can choke easily. But she does eat lots and is a healthy weight and very tall, so no problems there!!! I am interested to know what changes you have noticed already in the 6 weeks post op - how great that it's been a positive move for him.

mummy2pickle - that's great that school were able to provide the evidence you needed to get the op agreed. My daughter is nasally when she speaks too, but her speech is clear enough. How is she doing now post-op? was there a lot of bleeding? It is a big operation to put them through, poor things, bet it's sore.

emelsie - so pleased that it worked for your daughter. Have you noticed behavioural differences at all, as this is something I think which is also affected in my daughter's case. I'm sure that the tiredness must affect her behaviour and certainly she can get hyper and we've had problems at nursery and school in the past.

I'm certain from reading all your comments that she needs to get this done, it's just a case of persuading the professionals!

@HairyMaclary5 obviously they can continue growing, so just because your DC passed the sleep test once, doesn't mean it might not get worse. I believe they are supposed to keep growing until they are 8 at which point they start to shrink or something like that. Did they say in the notes what category size tonsils your DC has? My son was a 3/4 when he was 1yo but a full 4 shortly before he had the sleep study at 2, in his case it was life threatening and we were told he was hours away from his lungs collapsing from the strain of trying to breathe while sleeping. Other symptoms he had were things like excessive drooling, he couldn't eat solid food (eating banana often ended up with him choking), and he started to fail to meet his milestones, I guess his is a pretty extreme case but for all the upset we went through, the op is so simple, takes about an hour with an overnight hospital stay and 1 week recovery which includes discomfort and a 2nd week or relaxing just so that they don't get germs from other children.
I think the improvements for my daughter were not so obvious, as hers was not so acute but I think her learning improved and she breaths rhythmically now so I don't worry about when she will take her next breath anymore.

Oh dear Bee, that sounds horrendous for your son. Did you yourself have enlarged adenoids as a child, as I've heard it can be inherited.
Dr never mentioned categorising the size at all, both appointments we had were very quick and really just involved a two second look in her mouth and nose. 🤨

Has anyone else had a child with hair which is thin and broken off in parts? Could this be related to breathing problems and restless sleep?