Sleep study at Great Ormond Street

[crashbandi]

Has anyone been for one there? Taking my 4 year old DS soon for sleep study due to adenoids/ sleep apnoea.

It says on the letter u are in charge of their care whilst there and must never leave them unattended.

Are u on a ward or do u have a private room? Just wondering about needing the loo!

Also are traditional pjs for him better? Seeing as he may be hooked up to monitors. Was thinking it'd be more easy access with buttons down the front.

Any other tips or advice would be most welcome! I'm seriously doubting if he will even allow them to put the monitors on in the first place 🙈

When my ds had this,done he was just on a normal ward and I had a put up camp bed beside him.

The ward had a loo and parents room with tea and coffee etc.

Check the times you need to be in.

We went in after dinner, he was hooked up at bedtime and we left in the morning and he went to school and me to work!

It was quite relaxed and simple.

We were local hospital and not at gosh.

Not GOSH for us, but we found the alarm on the monitor going off really disturbing so little sleep anyway. Although watching the says drop for each apnea episode was really odd.
Normal pjs are fine as long as they're footless. If it's like ours, the monitor wraps around the foot.

We need to be there at 7.30pm and then we are out by 7am I think.

How many monitors did they use? I've read conflicting info online. Some say only about 2 and others say like 4 or 5 including one around their chest??

Honestly can't remember but it wasn't overly intrusive.

My ds was about 9 at the time and is 18 now. It was a long time ago!

But yes - be prepared for the alarms to annoy you

@Eileen101 that sounds scary hearing the alarm!

Since we started using a nasal steroid spray my DS symptoms improved particularly the sleep apnoea. I have stopped using the spray however as it was making his nose sore. Since stopping he is sleep badly and snoring again. Hoping that sleep apnoea will show on the sleep study. I'm so nervous the nhs will refuse the adenoidectomy.

The ENT Doc who saw him this summer said he could tell he wasn't breathing properly just by looking at him (awake not asleep) and when he looked up his nose said they were totally blocked by adenoids. So he def needs it doing. Just so anxious the sleep study May say nothing wrong!

I have dozens of videos of him stopping breathing in his sleep, sometimes for 10 seconds at a time

My DS had this at around 5 years old at a general hospital. Normal pjs and he had a monitor on his finger all night which beeped everytime his oxygen level decreased to a certain number. He slept right through the night. They kept lowering the amount once recorded but it kept decreasing so my DS ended up going into theatre the next morning for immediate removal of the tonsils and adenoids. The apnea disappeared from night 1 after having them removed. I was given a camp bed to use next to him whilst he slept.

Wow @Craftylover43 it must have been bad for them to operate the next day! I hope he recovered ok and it helped his symptoms

Bed manager in paeds here.
Arrival is usually around 6pm to allow time for settling in, observations etc. Child is allowed to settle at usual bedtime for them, you can bring your own bedding/pyjamas/comforters etc.
We then connect up the equipment and you're down for the night, depart around 7am when you wake up or you might stay for a review with the Dr before you go.

I put all my sleep studies in side rooms to have optimum levels of quiet, plus the equipment can be noisy and you don't want any disturbance if possible.

Very common for sleep studies to not go brilliantly due to children struggling to sleep in a new environment.

@flowngo thank you! Do you know how many times they'll attempt to redo a sleep study If the child doesn't cooperate?

Don't think I'll be able to keep travelling to GOSH over and over to have it done if he doesn't play ball!

We'd repeat it once more if it totally didn't work the first time.

Hi, usually at GOSH they put you on designated sleep study 'ward'. It's a few years since my DC last had one but we had them every year for the first 9 years of their life.
If it has remained as it was, there are individual rooms with a separate bed for a parent. Some have their own bathroom as well. The staff are lovely & happy to explain all the equipment.
Child is wired up with o2 monitor, usually finger or toe (sock is very useful to keep it in place) Def need Pj's, ideally with separate top & bottom so they can put wires easily through the top. Likely to need nasal prongs but they are not massive and my DC who is very hospital traumatised has always coped well, as staff are very reassuring, particularly if a child is especially anxious. They will let your child 'help' to put the equipment on. If your child has a favourite teddy or doll, we found it really helped if staff put some of the equipment on the teddy first, makes it bit less threatening.
From memory there are sticky tabs on chest/abdomen like in an ECG. These are connected to various sensors. There is a microphone discreetly in the room to pick up snoring and equipment next to bed. We joked the wires looked like spaghetti. Staff pop in/out during the night to check position of your child. They are very quiet and considering it's a hospital stay, it was always one of our easiest ones.
In terms of not being able to leave the child alone, I think this is to stop parents swanning off and leaving care/"baby-sitting" to the sleep technicians on duty. I've heard many a story & seen first hand some really crappy parenting where staff have been expected to care well above nursing needs because the parent(s) have gone off the ward and got drunk/treated it as a night out in London!
There's a tiny kitchenette where you can make hot drinks and toast. They ship you out quite promptly in the morning. Generally there will be respiratory consultants ward round who can give you an overview of what they saw on the monitoring. If anything of very serious consequence, they are unlikely to discharge you there and then - but usually only for kids who stop breathing and don't recover their 02 sats on their own/have high levels of C02 & need to go on C-pap/bipap or similar without delay. Hope that doesn't too scary - tried to cover as much as I can remember.
If your child doesn't like sticky things being removed from skin, ask them to use appeal or similar wipes/spray gel so that it hurts less.

Oh forgot to add, they don't necessarily need to sleep the whole night through. So long as they get a few hours, this should give them enough info hopefully!!

@crashbandi thank you! It really did help and after a year of trying to get a professional to see how bad it was, it was a relief to finally hear him sleep peacefully! Wishing you all the best with yours and I hope it gets sorted for your DC.

@CreakingatTheWhingers thanks so much for your detailed message! I am worried he won't allow the sticky chest pads. He hates even someone putting a sticker on his top let alone something on his skin. Oh god!!

I will try and prepare him the week before and talk about what will happen so it's not all a big shock.

Terrible that some parents would leave their kid there and go out for the night 😲!!

Fingers crossed it all goes well and we get the op he so desperately needs!

Just wanted to find out how the sleep study went, I would be really grateful if you can provide as much detail as possible as we are in the same situation and hoping to get a sleep study very soon for our DC

Hi @Creato
We still don't have the results from the study, so prepare urself for a long wait for those.

We got there at about 7pm and were given our own room. It has a bed for child and a fold out bed for the parent. Our room had an en-suite bathroom with toilet and shower.

A nurse comes in and u have some forms to fill in. Once child in pjs they come and put sensors on their chest, tummy and sides, then around their toe I think and then they tried to put a nose tube in the nostrils but my son kept pulling it out so they tried again once he was asleep but he wasn't having it so they left that part out.

Then they monitor child all night via cameras audio recording and the sensors. Nurses will come in v regularly throughout the night to check them and check sensors are on properly. A couple of time my sons came loose and they came and sorted.

I didn't get much sleep at all as was waking from nurses coming in.

In the morning they take it all off and you're free to go. We went and had breakfast at kings x.

All the staff were brilliant, very reassuring and let u know all the info.

Good luck and I hope you get the appointment soon!

Thank you so much for explaining and all the information, we are just so anxious. Him not able to sleep properly is heartbreaking honestly. How long do you have to wait for your results?
We have finally been invited for a sleep study, we live in Colchester. Apparently we have to go and pick up the machine to do the at home sleep study. I don’t know how effective that will be as we really want the adenoids and tonsils taken away out

I think the at home sleep study will be better for more accurate results. My son was so exhausted by time we got to London he fell into a v deep sleep, one of the best sleeps he's ever had typically and hardly any apnoea occurred.

Not sure how long it'll be, I need to chase ent again. He had sleep study in October 😫 Last time I spoke to them they said he was already on the surgery wait list, so not sure why they had to bother with the sleep study anyway tbh!

You are so kind thank you so much for the info. Good luck with your son I hope he gets his surgery soon. We want him also to get the surgery. Hopefully he doesn’t have his best sleep yet whilst we are doing the study , would you have any tips for the sleep study?

@Creato try to keep routine as much as normal as poss. Button up pj top is a good idea if you have sensors on the chest as easy to access.

Treats and praise for putting sensors on!

Thanks, good luck to you too!

Thank again for your advice, everything went well with the sleep study we are now waiting for the results. Hope your DS gets the surgery soon. Everyone on here is saying it really improves quality of life. I just wanted the surgery so we can all start a new chapter in our life!