ENT and Grommets - the diagnosis story

The reason, it is suspected, that C has a significant speech sound disorder is because he had large adenoids, large tonsils and glue ear. The glue ear, specifically, prevented him from being able to hear sounds correctly and therefore mimicking them.

This was discovered after I persisted at the GP around C's breathing when he sleeps. C was less than a year old. I was told I was being an over cautious first time mum and that his breathing was fine. In actual fact, I was paranoid he had bronchitis because a bout of it was going around at the time. I noticed he was holding his breath while sleeping and I took a video of it and then showed the GP at our next appointment. They finally agreed it didn't look normal and referred C to an paediatric specialist. 

Our first appointment with a consultant was quite underwhelming. He was running really behind and he seemed fine with what was presented to him. At the time, C was playing around with his ears and just as we were being kicked out of the room, C's dad asked the consultant to look at C's ears as he's always playing with them and quite sensitive about them. The consultant sighed but agreed and looked inside.

"Glue ear," he said with a bored tone. "Most kids have a form of it at some point. Usually goes away."

"Well, it hasn't," C's dad argued. "He's been like this with his ears for ages. And the breath holding and the runny nose."

"And he mouth breathes and snores at night. That's not normal for a baby," I added.

"I'll refer him to ENT."

We waited months for this appointment, but finally got one. Glue ear still there. Couldn't really look in C's throat as he was kicking off, and then the consultant made the ridiculous suggestion to put a camera up C's nose to check his adenoids if we could 'hold him still'. This was the most traumatic experience. C was screaming like he was being murdered and the consultant gave him a nose bleed with the camera. No numbing spray, no nothing. To top it off, he declared that C was fine, but agreed to send us off for a sleep study.

Cue another few months and we got the appointment. At St Thomas' in London. A horrific night where neither me nor C slept. Usually, C sleeps in bed with me, but for the purpose of the sleep study, he had to sleep in the bed alone while I was on a roll out mattress on the floor. He woke often. He cried often. He disconnected from his wires often. But after a few weeks, we got the results and C had moderate obstructive sleep apnoea. Longest time he held his breath for was 19 seconds.

I felt vindicated but also deeply sad. It explained so much about C's behaviour. His constant waking in the night (which used to send me to the edge of despair each night), his lethargic behaviour during the day and his mood swings (terrible twos, my ass). We waited for a meeting with a more senior ENT specialist and was given one at the Evelina children's hospital at St Thomas'. 

Daniel Tweedy will forever be my hero. He actually listened when I spoke. He took me seriously. He also managed to find a way for C to open his mouth enough to check inside his mouth and, you guessed it, discovered tremendously large tonsils. He scheduled C in for surgery ASAP.

Surgery day was awful. We had to hold C down while they put a mask on him for the anaesthetic and wow did C fight it. And then they wheeled away my baby and made us go and wait. Longest couple of hours ever. When they called my name, I literally ran down the corridor to him as I could hear him wailing. They say when you wake up from being under you can react in all kinds of ways. Well C reacted terribly. He was inconsolable. He tried to pull out the catheter in his arm. He refused to eat or drink and his little voice was so croaky. But, the tonsils were gone. As were the very large adenoids a previous consultant had told us didn't exist. They had also inserted grommets into C's ears.

They used a method that burned the tonsils and adenoids rather than surgically cutting. This was supposed to have better recovery and easier on their throats/noses. In fact, we were released home the same day and C was up and about the next day as normal. Even went back to nursery a few days later. It took a few months to notice a difference in his sleep, but there was a difference.

Until a year later, thanks Covid19, when we had the consultant finally call us for a post op catch up and I said the sleep apnoea had seemed to return.

"Impossible," Dr Tweedy said. "Removing the obstruction should get rid of the sleep apnoea."

"He's back to holding his breath," I insisted.

"I'll get you an appointment for me to take a look."

Guess what? The tonsils had grown back. This is the risk with burning rather than cutting. There's a risk they can come back. A 1% risk, but of course it had to happen to my child. This time around we weren't so high up on the list so a week after C turned 4 we were back in surgery and having them removed again. One of C's grommets had fallen out and the other one about to fall out so they fixed the one still in place but due to scar tissue didn't replace the other.

This time, I was on my own because of Covid restrictions and it was particularly harrowing. He also reacted badly to being under and was quite violent when waking. He was punching me, telling me he hated me, pushing me away and quite difficult to settle. 

Still not sure whether the problems are fixed. His hearing is now within the normal ranges, so the grommets have. He can hear me open a packet of chocolate from 3 rooms away, so assuming it's all good! I'm not convinced his sleep apnoea is fully gone, however. He is a lot more active but he still holds his breath and mouth breathes. Still awaiting post op and further sleep study to confirm!

I hope this helps anyone going through the same journey.