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By the age of 1, our little girl had suffered with over 3 bouts of tonsilitis and had needed antibiotics on several occasions. We started to notice that she had a very loud snore when she slept, and nursery had commented on this several times. She was always very congested, and had a constantly runny nose. But more worrying was her breathing patterns in her sleep. She tended to stop breathing for periods of up to 20 seconds, then snort and breath in through her mouth before resuming breathing again. We took her to our GP, who told us that we had a child with sleep apnoea.
A Child with Sleep Apnoea
Sleep apnoea is a sleeping disorder where a person suffers from breathing being interrupted during sleep. This interrupted breathing can occur hundreds of times in an average night. The sufferer can stop breathing for a number of seconds at a time. So consequently this can lead to problems if the body and brain are not getting the oxygen they need.
We first noticed Elizabeth’s breathing when she started nursery at 9 months. Children are always likely to pick up all the new bugs and viruses when they are in closer proximity to others. So we weren’t surprised when she ended up with one cold virus after another. Winter always tends to be worse for coughs and colds, as the central heating gets switched on and children play more indoors.
However we weren’t so prepared for the extra sleepless nights. She seemed to be waking up more and more in the night. Her sleep seemed very disturbed due to her breathing patterns. When she did have a cold we all went through several really bad nights. My partner and myself ended up having a shift rota for staying awake next to her on the worst nights. We were all exhausted.
She tended to be more irritable. And her eating was affected, when she was blocked up she refused food and wanted more milk.
Our GP referred us to our local hospital Paediatric Ear Nose and Throat clinic. But did warn us that there would be a 3 month wait to see a consultant.
5 Nights in Hospital
It all came to a head when she was 14 months old. After a particularly bad few nights of disturbed sleep and poor breathing, we felt she was really struggling. We called the emergency number and were seen at the children’s department of the local hospital. Her blood oxygen saturation levels were down to 92%, so she was admitted into a ward.
We spent 5 nights in the hospital while they did sleep studies and kept her under observation. One of us was allowed to stay overnight each night thank goodness. But it was an experience that I would not want to repeat in a hurry.
The Waiting Game
We went to see a Paediatric ENT consultant, who told us that they rarely operate before 3 years of age or 15kg weight. Too many complications can occur and there can be too much blood loss in children smaller than this. So we would have to wait. Plus things can sometimes improve spontaneously. We were put on a 6 month review.
Over the summer things did improve. Less cold viruses and the warmer weather translated to better breathing.
Second Winter Season
However, once the second autumn had started the symptoms returned. Elizabeth started waking again several times a night, and being irritable during the day. On the worst days she didn’t want much food. I was starting to worry if her apnoea at night could be affecting her physically. Or affecting her speech and hearing as she was always so full of nasal congestion. She regularly breathed heavily through her mouth.
A second and third visit to the consultant for reviews and we were finally told that Elizabeth would be put on the waiting list for an Adenotonsillectomy. This is where they remove both the adenoids and the tonsils, as they have become really enlarged. This is why she is always so nasal and congested.
Again we have a wait – of 36 weeks in our area. But this will put her at just under 3 years of age, which is the threshold for the operation.
Whilst the prospect of an operation on my daughter does scare me, I do want to go ahead. It can only help her breathing. And this in turn may help her to sleep better. Finally it may help her to be less irritable and improve her energy levels through being less tired.
And this is where we are right now. But I did want to share our story so far to raise awareness of this condition.
What is Sleep Apnoea?
Sleep apnoea can happen in adults, and it is what most people will think of if you talk about the condition. In adults it tends to happen if a person is overweight, have an over large tongue or small jaw. It can lead to heart problems, depression, daytime tiredness and headaches. It can even be fatal if left untreated.
There are actually 2 types of sleep apnoea.
- Central Sleep Apnoea occurs when the brain doesn’t signal correctly to the muscles that control breathing. It is not very common.
- Obstructive Sleep Apnoea is a far more common type, and is due to the airway being blocked whilst asleep. This can happen due to an excess of tissue, or too relaxed tissue making it hard to breathe.
What are the Symptoms of a Child with Sleep Apnoea?
In a child with sleep apnoea, weight can be a factor but it doesn’t have to be. It can also be due to having too much adenoidal and tonsillar tissue at the back of the nose and throat. Symptoms are
- Loud snoring
- Pauses of breathing of up to 20 seconds, followed by gasps, snorts and fast breaths.
- The snorts can wake a child and cause disrupted sleep
- Restless sleep and strange sleeping positions (Elizabeth used to sleep on her knees with her bottom in the air)
- Daytime tiredness and behavioural problems
- Bedwetting , especially if the child has been dry previously
- A constant nasal discharge and the child having to breath through the mouth.
Delayed growth and heart problems may also be associated with child sleep apnoea. I have always been concerned that there is a real risk of Elizabeth just stopping breathing in her sleep. But I am generally a very worried mum, its just how I am. The consultants have always firmly stated that she will not stop breathing.
So – Do You Have a Child With Sleep Apnoea?
These would be my tips.
- Go see your GP if you have any concerns. Record and take some video evidence of how your child sleeps. Ask for a referral to ENT if you are worried.
- Ask for a sleep study
- Raise the cot/bed mattress at one end to make it higher. We used 2 pillows so that Elizabeth could sleep on a slope. We did always move her back to being on the slope if she turned herself round. Eventually she is now at the point where she moves herself back up the gradient in her sleep.
- Do not have the room at too high a temperature. We found the optimum temperature to be 18 to 20 degrees Celsius. A room that is too warm tended to make Elizabeth’s breathing far worse. Our Gro-egg has become one of our best friends.
- Invest in a good thermometer. The most accurate ones we have found are the in-ear type.
- We didn’t find the plug in decongestants to be useful, but we did use “snuffle babe” rub on decongestant at night. We found this worked better for us.
- If excess weight is a factor, work with your doctor on diet and fitness in your child.
I hope that this has helped you decide your next move if you do have a child with sleep apnoea. Do let me know if you have anything further to add by commenting below, or follow our story on social media.
Next – see how she coped with having surgery to remove her adenoids and tonsils in preparing for a tonsillectomy
Want to see how it all turned out? Read The Benefits of a Tonsillectomy
I’m taking part in the Mummy Monday linky with Becca from Becca Blogs It Out