anyone had a private or NHS sleep study for DCs?

[CeilingThomas]

Hi, our DS has been referred for a sleep study due to difficulty breathing through his nose at night. I'm trying to find information on what types of monitoring the NHS do vs private during the sleep study.

I have a suspicion that NHS may measure oxygen levels only where as private may use audio/visual as well as potentially measuring brain activity. Much of the info I have found is on US sleep studies which is, of course, a very different healthcare system to the UK.

Does anyone have experience of sleep studies?

Thanks very much
Ceilingthomas

[Whereisegg]

My ds (6) was a mouth breather for years, always sounded bunged up when he spoke, and snored like a trooper.
We didn't think too much of it.

When he was 4, we went to a family gathering that required the 4 of us to share a room (me, dp, dd and ds).
Anyway, dc were asleep when dp and I went up, and it was awful, he stopped breathing (snoring) for up to 9/10 seconds at a time and very frequently.

Took him to dr, explained.
Dr looked, said tonsils a bit big and gave steroid spray for nose.
No change when spray had all gone.

Back to dr, sent to sleep clinic on nhs.
There was a video camera but no sound, and oxygen monitors.
Results were 'fine', no problem apparently.

4 weeks later at follow up, I informed them there was no change.

He ended up having tonsils and adenoids out last year at 5.
Surgeon said they were biggest he had seen on a 5 year old, his nose was completely blocked and said sleep apnea would have been really bad.

So our nhs sleep study was pretty ineffective, although its just sods law that they are ok for tests like these.

Sorry for essay!

[CeilingThomas]

Thanks for your response whereisegg, thats kind of what I'm worried about. He snores like a drunk old man and gasps for breath every few minutes/seconds. I have observed him try to breathe in and fail and stop breathing for a few seconds but not usually more than 3-4 which is apparently normal(?!). although once I observed for 30seconds. Its not normal for this to happen. He's been doing ti for almost a year and I'm worried about being fobbed off.

[Whereisegg]

I was horrified when they said he showed no symptoms on his sleep study, to the point where I was worried the drs would think I was neurotic if I didn't let it lie.
I actually had to tell myself that we weren't at the drs every time he sniffed, and I was worried enough about it to be 'that parent'.

The surgeon saying what he did, means I knew there was something wrong no matter what the sleep study said.
Fight your dc's corner op.

[Kahlua4me]

Ds had an overnight sleep study when he was about 18 months.
It involved having a clip on his toe measuring his oxygen levels. We were allowed to do it at home and then return with the machine the following morning.

After that he had to go into hospital for a general so they could look down his throat and all about.

He was diagnosed with laryngomalacia and no treatment was needed as he was still thriving despite not sleeping.

This was done through nhs hospital and care was excellent.

[CeilingThomas]

Thanks kahlua, did your DS grow out if it? DS is also thriving (good weight, within normal boundaries for speech etc). Great that care was excellent, all my NHS experiences have so far to date too. I'm concerned I will be told nothing can be done if he's thriving. We can't go on with such little sleep though.

Thanks for your responses, it really helps!

[Whereisegg]

How old is your ds, op?

I'm not sure him bring a healthy weight or having no speech problems will have any bearing on them treating a potential sleep apnea situation.

Could you record him on your phone?
You could use that to 'prove' your concerns...?

[Kahlua4me]

Yes, he has more or less grown out of it. The only times it is now a problem is when he has a cold or if he falls asleep in the car, which must be to do with the angle of his head.

He followed the exact path and time scale the consultant told us about so I found that reassuring and had something to work towards.

No treatment was needed as he was reaching milestones so dr said that the oxygen was not dipping too much to affect his growth. It made sense to me but not sure I am explaining it properly! I do know of another child with same thing who has had treatment as he wasn't thriving and it certainly affected him far more.

He finally slept through the night aged 5.6 years! At his worst he woke up 8 to 10 times a night! Now he is 10 and still snores and coughs during the night but no way near as much as he did.

[Kahlua4me]

Reading back through this ds might have been slightly different from whereisegg's as in our case it was his windpipe that was collapsing whilst asleep nothing to do with tonsils and adenoids.

Windpipe would collapse and he would cough to reinlflate it thereby waking himself up.

I found that I had to fight almost with various doctors and health visitors to get him seen so be prepared to make a fuss and keep at it until you are happy all has been done.

[CeilingThomas]

Sorry for radio silence, been away with family :) I agree the answer may be 'do nothing' but I'll do my best to fight DS's corner as he's so tired all the time. Got a private appt tomorrow to see the consultant. Fingers crossed and thanks for your experiences xx

[CeilingThomas]

Sorry, should have said, registrar told me that usually toddlers with sleep apnea are under weight and often have delayed speech or other milestone. I agree with you that shouldn't be a factor in treatment. My DS is 19 months old. I do wonder whether they'll say he's too young to intervene but we'll see. He may well be too young. I don't want him to suffer needlessly.

[mummyonthewedge]

In case it helps - my DS was referred for an NHS sleep study when he was 3 due to symptoms whilst sleeping (sweating, loud snoring). The study is an overnight stay (you stay with them), where they used oxygen monitors on his finger and toe, and tubes in his nose, and also sensors on his chest to measure how much his chest went in and out. The test showed that his oxygen levels were so low that it was causing stress on his heart. He had his tonsils and adenoids out asap - tonsils were huge. We are still going for follow up tests because his oxygen levels still aren't what they should be, but we are now hoping he will grow out of it.
Just wanted to say - I had to really push to get him tested. He was normal weight and had speech delay but this was due to glue ear (he had grommets as well). Follow your instincts and push for a test.