A mum’s experience of sleep apnoea in children

I am no doctor but I really wish someone had written a thoughtful case study on sleep apnea and paediatric ENT issues that I could have read a few years back.  I am talking real experiences and examples.  Details were few and far between.  I am in no way qualified to diagnose anyone or give medical advice, but I felt like writing this post because this is an experience that might help anyone recognize a similar situation and I LOVE trawling the interweb for like-minded nerds to probe about their issues when WebMd just doesn’t cut it. 

In layperson’s terms, there are basically two types of sleep apnoea: neurological and obstructive, the latter being the most straightforward for obvious reasons.  It is the only one of which we have any experience.  Most people don’t realize that sleep apnoea is neurologically damaging in the long run as essentially it stifles oxygen supply to the brain and can, apparently, trigger ADHD behaviour, impair concentration, and cognitive function.  Adenoidal and tonsil tissue, we were told, is basically a bacteria-magnet, like a gross wet sponge harbouring crap even when they appear in relative good health.  The adenoids, when enlarged can press against the ear canal leading to contamination from the nose and throat to the ear. This is particularly the case when your kid is horizontal as any infected mucus can wash back and converge in the middle of the head, where all three ENT areas meet.   I hope this post is irrelevant to you and maybe your kid is just a sweaty little light sleeper and all this will bore you to tears but I thought it best to share as you never know….

I had to cobble together this info and mash up all the feedback we received from various consultants and articles I read and so on.  What really struck me was that it is sometimes the seemingly unrelated symptoms which lead to a concatenation of discoveries which induce that “Eureka!” moment.  Although I believe in not panicking, it is good to be vigilant.  For instance, in our case it was my son’s lack of impressive conversation compared with our elder daughter which tipped me off, when he was under a year old, that something was afoot.  He had also had trouble sleeping – but only intermittently, and had had a few ear infections.  But really, it was the subtle difference between them and his muzzy-headed behaviour in the relatively early days his not looking up when I called which made me wonder.   Since he was still so small and it was early in his development I had to fend off accusations of being a Tiger Mother for comparing my children. My reasoning was that they were all I had to go by and that I was not judging him, simply monitoring.  “He’s a boy, they aren’t such major talkers” people would say. Or “but Margot is such a verbally precocious child, give him a chance, each child is different and does things in their own time”.  I knew all that, what rankled was that I had unconciously (at first) started speaking to Otto only by looking at his face directly, and making sure his eyes were on me, especially my mouth.  I kept  pointing to my mouth and saying : “look at mummy” A – R – T – I – C – U – L – A – T – I – N – G  and enunciating with a precision I had never bothered with before as otherwise what I said just seemed to be ignored.  I even stopped talking to him in the two languages we use at home, just sticking to one, as it seemed his little head could not cope with the added effort.  Yet in every other way he was doing well, his development at nursery, his interaction with others… I felt he had some mechanical issue.  I just knew something was not right.  Months went by and I began to dig my heals in, I stuck to my guns.  I knew that if I clearly mouthed “play ground” and used a nice clear voice, he should not have repeated “blay-blew” back to me.  It just bore no resemblance to the word I was saying.  It was as if his hearing was really distorted.  Eventually we took him for a hearing test and discovered he had a 50 decibel hearing loss (equivalent, – horrifyingly – to wearing 2 pairs of ear plugs simultaneously rammed in your ears), which is considered “moderate to severe” hearing loss.  I know!  Although his speech is back to normal now at age 5, without having had any speech therapy (because we caught on early enough), this is still quite shocking – bearing in mind that his newborn hearing tests were normal and we thought everything was in order.  Chronic glue ear was a real problem in the period intervening the newborn hearing test and age 3 and we didn’t realise how far-reaching the effects of it could be.  I kind of wish that we had just bitten the bullet all in one hit the first time we had doubts and inserted the gromits and eliminated the adenoids and tonsils, as this is what we ended up doing anyway, over a period of 5 years – but in agonising dribs and drabs… but, understandably, we were hesitant about subjecting him to anything invasive. We had not balanced up the pros and cons as not all the cons were evident at the outset.  Once swathe of issues would be resolved and replaced by another, so that his ENT tract was just one string of ailments ranging from minor to major.  It became his “thing”. We tried homeopathy, eliminating dairy, saline sprays, nebulizers, humidifiers, pillows, no pillows, olive oil in the ears, antibiotics, the list goes on.

In not-so-brief, Otto had ear infections 4-6 times per year from his first year of life.  Inexplicable crying, no sleeping, then trails of white powder around his ear I later twigged was actually dried liquid) or in the worst cases drips of pus or bloody serous fluid would come out of his ears. Sometimes his mood seemed unaffected and he merrily smiled and I would kiss his soft round cheek and literally feel wetness pouring from his ear, aghast.  After he had the gromits inserted to drain his ears his hearing improved but until the gromits fell out of their own accord 2 years later his hearing was still not perfect.  The adenoids were removed along with the gromit insertion (this is quite a common practice) to help the glue ear so we thought we were through.  Then his sleeping did not improve, it actually worsened.  And so we worked out way into the second phase: the sleep apnoea voyage of discovery…

Adenoidal and tonsil tissue, we were told, is basically a bacteria-magnet, like a gross wet sponge harbouring crap even when they appear in relative good health.  The adenoids, when enlarged can press against the ear canal leading to contamination from the nose and throat to the ear. This is particularly the case when your kid is horizontal as any infected mucus can wash back and converge in the middle of the head, where all three ENT areas meet. Once we had eliminated the glue ear and adenoids the snoring improved considerably, but within another couple of years I noticed that the copious night-sweating and restless sleeping and interrupted breathing really came into their own.  I camped out in my son’s room with my phone, recording his breathless fits of sleep and stressed about whether to film or shake him to restore his regular breathing.  And then I started to check on him two, three, four times a night, the monitor on max volume, listening for gasping breaths and coughing fits which inevitably came… It seemed we had just scratched the surface with the gromits and adenoidectomy.

According to our consultant there are a few indicators that can suggest sleep apnoea – this being before you have a sleep study to diagnose with certainty.  These are any number of the following:

• mouth breathing
• snoring
• extended periods of no breaths being taken and then snuffly, snorty recuperative laboured breathing to compensate
• gasping
• large tonsils / small space between tonsils (by this the gap could be as small as half a centimetre wide)
• bags / dark circles under the eyes (chronic tiredness)
  
• thread veins in the cheeks (from exertion breathing)
  
• a very obvious pot-belly (from laboured diaphragmatic breathing)
• night sweats
• thrashing
• soaked nappies (especially noteworthy when bed wetting occurs once potty trained)
• a persistent cough
• lethargy in the daytime
• allergies
• moodiness and behavioural issues (how one is supposed to distinguish what is just a tantrums and what has a medical cause, I have no idea)

…Then there are those that are obvious mouth-breathers even when wide awake and those who suffer recurrent ear infections or tonsillitis.  Most people don’t even know about the connection with bed-wetting. (eneuresis), GPs particularly.  Our consultant was impressed I that had nerdily unearthed this tidbit.

After joining the dots I went to my GP who eventually stopped brushing me off as being neurotic, and referred my son for a sleep study at St Mary’s.  It basically entailed us accompaning our child to a paediatric observation lab overnight for which they covered him in electrodes and monitors, inserted short tubes up the start of his nostrils (not comfy for the child or course) and recorded his sleep quality, number of wakings / rousings, oxygen saturations etc.  I slept alongside him in another bed.  It was amazing all things considered however I didn’t feel that he slept in a typically representative sweaty and snore-y way that night, mainly as a result of the constant interruptions of the staff entering and exiting our room to take obs and shift wires around his little body.  Crucially though, they studied the oxygen sats to see how severe the apnoea was.  Although his sleep study at first glance only seemed to unearth mild symptoms of sleep apnoea due to his sleep being so artificially broken the night of the test, the consultant picked up on a subtle pattern of jagged dips in his saturations which  – although not deep – suggested by their shape a potential for sharp drops when left undisturbed.  This combined with my reports and descriptions put my son on the list for tonsil removal.   There are kids with such severe symptoms that they are rushed to the top of operation lists for the following day – we were clearly and thankfully, not in that extreme category.  It did however really help that I had phone video recordings upon my person of my son sleeping and snoring and stopping breathing, to show at consultations as evidence of his usual sleep quality or lack thereof. 

For the first adenoidectomy the tissue was removed by an older technique which I believe is called curetage (as opposed to laser ablation).  I was explained that if there is a “collar” of tissue of the adenoids left in the ENT tract due to this method of removal which does not allow as close an incision, the tissue can in some cases regrow… and in our case they had to be removed again – or “revised” at the same time as the tonsillectomy. 

The tonsillectomy in our case, and as commonly is the case these days, was just an outpatient day procedure.  The operation was around 11am, with youngest children being first in the queue ahead of us.  The op lasted an interminable hour (which in reality included some time to come around before we were invited in to the recovery room to see him) and within moments of us being with him – all grumpy and shaky –  he requested water to drink.  He then spent about 3 hours on the paediatric ward recovering, and after two short naps was almost back to his old self, eating and drinking normally, albeit with slightly altered taste and appetite.  Eating and drinking is encouraged immediately, in part because fluids are needed to eliminate the anaesthesia and in part because food passing the newly wounded tissue knocks debris such as blood and scabs from the excision site, minimizing scar tissue build up and therefore infection while also allowing normal functions to resume while under pain medication avoiding a steeply painful transition to eating and swallowing if delayed further down the line.  No more meals confined to soup, ice cream and jelly for these kids then!  My son even had salt and vinegar crisps, strawberries and mango a few hours after the op.  We just gave him whatever he felt like having.  His taste went a little awry for 10 days or so, and his voice too, come to think of it.  He suddenly sounded much younger, higher-pitched and more squeaky.  This lasted about a month and his voice seemed to come down a fraction every day.  The adenoidectomy voice change was less obvious to me, but apparently severely inflamed adenoids can change the quality of the voice quite considerably once removed.

FYI, the older you are, the more painful it is to have your tonsils removed as adults have very vascularized tonsils apparently and this process of vascularization increases every passing year.

In a nutshell, I have to say that the first 2-3 post op days were the worst, but not terrible. The key was to just make sure we kept on top of the meds prescribed (just Calpol and Ibuprofen) because in terms of pain management, you don’t want to have to scale that cliff face of pain once you fall all the way to the bottom: They seem fine at first if you forget one dose but then they get all morose and moody and tearful in those initial days.  Once the pain gets beyond a certain level they don’t want to eat or drink or, maddeningly, take their pain medication so you end up in a terrible spiral of misery on one side and parental cajoling on the other.  Having said that, by day 5 mine was on approximately half the recommended doses and off almost all pain relief within the week.   All the official blurb recommended a week to 10 days off school principally to avoid infection risk during the nadir of the healing process.