Showing posts with label grommets. Show all posts
Showing posts with label grommets. Show all posts

Thursday, 26 May 2016

Sleep Disorders And Night Terrors - Our Five Year Battle (And Counting)

Night terrors are kind of crazy.

For my middle son they happen most nights, about an hour after he goes to sleep.

He always screams.

He's always inconsolable.

He always wakes the baby.

There's nothing we can do for him; there's no comfort we can give him, no amount of trying to cuddle him, no amount of kind words or asking him to stop.

They come right out of nowhere.  Some nights he can be absolutely fine.

But most nights he wakes in this howling, screaming, terrified mess.

Hard to believe it, but they are tougher on us than they are on him.

He wakes in the morning with absolutely zero recollection of what has happened.  No awareness.  Just a nice, peaceful night, sometimes with a funny dream.

Thankfully.



We put the three boys to bed each night within a routine which has never really changed within the annals of time.

Bath, Supper, Teeth, Story, Story-tape, Bed.

It's pretty much the same every night.

It can be time-consuming.

Difficult to put into motion at the end of a long day.  It's important to me boys always go to bed happy.  Always with a hug and a kiss.

However, for poor Ethan, however much we tried, this wasn't always the case.

He may well have no memory of his night terror as they are now, but he used to have other fears at bed time too.

He's still scared of the dark.  He still fears the silence and the darkness around him when he wakes alone in the night.

His wee imagination goes into over-drive.




It all started when he was about a year old; the sudden middle-of-the-night screaming, the 'temper tantrums' which we just put down to sheer bloody-mindedness of our 'difficult' child.

He was never easy to put to bed.  He was a handful when he was awake!

But we all dreaded bedtime.

Our eldest son had always gone to bed nicely, easily, quietly.  But not Ethan.

He was terrified of going to sleep; absolutely adamant that he wasn't going to do it.

Every. Single. Night.

We'd spend hours indulging his night-time whims, reading him to sleep, changing bedrooms, changing lightbulbs, putting up blackout blinds and curtains on top of blinds.

We tried staying in the room and holding his hand, letting him sleep in our bed, letting him sleep in a sleeping bag, letting him go to bed with a million cuddly toys, as he was convinced that 'this time, mum, this time they'll look after me'.
Yup, this has been in the bed too! It's a bloody dressing up costume!

We tried to convince him he was being silly, it was 'just a phase', that he was big and didn't need us.

We listened at his door as he cried and screamed and pleaded with us to come back in the room until he fell asleep and we tried toughing it out.

We let him fill his belly before bed, we tried only letting him have something small, we tried different diets.
Reward charts.
Incentives.
Books which supposedly hypnotize.

It felt like we tried absolutely everything.

What we didn't know at the beginning, was that Ethan had terrible glue-ear, which was so profound that the doctor at the ENT clinic told us that basically, Ethan spent the first two years of his life hearing as though he was submerged under deep water all the time.

It took until he was two years old to diagnose, and then another year before he would get the grommets inserted, which changed his life overnight.  Suddenly he became verbal, a lot less frustrated and a lot easier to deal with.

The grommets were certainly an improvement beyond everything else, but we still had to deal with the fear and behaviour which comes from not being able to hear properly in those first three formative years.

It's had a huge impact.

He's a great kid.  He is very funny, with a rapier wit way beyond his years.  He is very clever.  But he has struggled.

Hearing properly very much contributes to other functions:


  • Social interaction: He's never struggled to make a friend, but there's been a lot of misunderstandings and a lot of upsets!
  • Communication: We've dealt with a LOT of tantrums, a lot of frustrated screaming and a lot of shouting.  Gradually we are teaching him to tone it down, but yes, this is a very hard thing to explain to others, especially as they think he is being horrible.
  • Reading and Writing: He started school this year and he has tried so very hard, and is getting their, but his failure to hear words as they are supposed to sound for a long time has mucked up his internal alphabet system.  He has fought very hard for every single letter.
  • Sensitivity: The grommets are great, but whereas before he didn't hear much, now he can hear everything, and to him it is very very loud! He therefore gets upset in places where there's more than your average noise levels, like parties, concerts and gym halls.


As he gets older he is becoming more and more able. His ability to communicate gets better and he is becoming less frustrated with life, which is great.

He now goes to bed with a lot less hassle.  Well, there's still some, but compared to what we used to deal with, it's nothing really.

We are however, still dealing with the night terrors. The last bastion of sleep disorder hell.

Apparently he'll grow out of them.

Apparently.

I really hope it's soon!







Sunday, 23 March 2014

Ethan's grommets

We weren't surprised when we found out our youngest was deaf, it was actually a relief to find out what wrong with him. It was something we had known about for ages but the wheels of the NHS grind unbearably slowly.

Thomas, our eldest son had been really quick in his development. He was talking by the age of one and holding full conversations quite easily by the time his brother was born when he was two. Ethan on the other hand struggled to get going with his speech, didn't interact with us in the same way and wasn't interested in story books. We spent a lot of time questioning ourselves our parenting. Was this second child syndrome?We were pretty knackered as Ethan was (and still is) a terrible sleeper. 

We also at one point questioned whether he might be autistic. A lot of the symptoms are the same- lack of concentration and interest in activities, difficulty playing with other kids, delayed language development, frustration. 

Then he was struck down with 10 ear infections in 5 months. It felt like we were at the doctor on a weekly basis. He started to hate the doctor. We started to hate the doctor. And I'm pretty sure the doctor started to hate us!

Eventually we saw the specialist and a whole new battle started. He was tested, we realised our wee boy was deaf and the consultant suggested that we do nothing. "Let's test him in 6 months, hopefully it will improve. We don't like going down the surgery route anymore." 

Everyone had their tonsils out when I was wee and as far as I knew grommet insertion was a pretty minor deal. I couldn't see the value in waiting another 6 months, but he was the expert and deals with these things all the time so we accepted his advice and went home for another 6 months of frustration and tantrums. Looking back I wish we had forced the issue straight away. If I had trusted my gut and pushed harder for surgery we might have avoided a lot of tears and misery. 

At the next appointment a different consultant, directed by our concerns, referred us immediately for surgery and about 2 weeks later he got his appointment. Although we were relieved we were really worried as well. After all, we had been told they don't like to dish out surgery anymore and there is always a slight chance things could go wrong isn't there? 

I did a bit of googling- bad idea! The whole thing looks pretty disgusting.



But then I checked out the NHS website and it did help to put my mind at rest, at least a little.

http://www.nhs.uk/Conditions/Glue-ear/Pages/Treatment.aspx

We were a bit anxious about how our wee terror would behave in the hospital so we spend quite a bit of time in preparation. In his bag of tricks we took:

1. Loads of books
2. Pyjamas
3. Pull ups
4. Stitch (The stuffed toy he got at Disneyland after Stitch picked on his dad in the Live Stitch Show- much to his glee!)
5. Cars
6. Jake and the Pirates toys

Ethan with Stitch

We got there feeling ready for a long, boring wait, but were greeted by friendly nursing staff who allocated him a bed and showed him straight into the playroom. He was totally in his element and so relaxed in the setting. He let the doctors examine him without a word of complaint and didn't say a word when they put the anaesthetic (magic) cream on his arm. The staff were all really skillful with their distraction techniques and to be honest I think he didn't really notice what was happening.

When it was time for the operation itself he was allowed to drive to the operating room on a really cool toy car and was distracted with an Ipad while the doctor put him under. This was honestly the only difficult part for me. Once the anaesthetic his his blood stream he faded like a light. It was surreal to see him drop off so suddenly, and then we just had to leave him in the capable hands of the doctors. He just looked so wee and defenseless.

I felt a bit guilty and a bit anxious as we sat in the waiting room, but after about ten minutes we got the call that he was finished and on his way back to the ward. And that was it, except that he slept for about 2 hours after the operation. Other children came and went and we just sat there watching him sleep. It was the longest and most boring part of the day. Eventually he woke up and we got to go  home.

All in all his care was fantastic and the staff were all excellent. I just wish that all hospital wards were run in such a friendly and open way.

His recuperation period was fine as well. Just a few spots of blood and some tears about wearing cotton wool in his ears in the bath. We solved this by all plugging ourselves up and calling the improvised earplugs 'Santa's beard'.

Since the operation his life has changed so much. He talks; actually we can't shut him up. And pretty much straight away he stared correcting some of the errors in his speech. I do miss some of these though. Never again will he tell me, "I c**t do that daddy!"
 It feels great not to have to shout to get through to him, although there is always an element of selective deafness in every child!

He is much happier as well now. He gets on much better at nursery, plays so much more appropriately at home an his imagination has flourished as well now that he can actually interact with his surroundings.

We are unbelievably glad that we did force the issue and push for surgery. It has made all the difference to our 3 year old and his quality of life. Now if we could just get the wee monkey to sleep all night in his own bed...







Featured post

That time my Dad left