sleep apnoea - paediatrician tomorrow - what should I ask/expect?

[bethylou]

DS2 (now 6 months) saw a paediatric registrar in May for reflux. We raised the fact that we feel he has sleep apnoea and were pretty much told it doesn't happen in 'healthy' babies, as she put it, and that we should turn off our mattress monitor.

The follow-up appointment is tomorrow. The reflux itself is becoming less of an issue (touches several types of wood as types this silly sentence!) and, while the mattress monitor is being activated less frequently now that DS2 is getting bigger/older, DH picked him up recently when the alarm went off and DS2 still didn't breathe for a further 10 seconds. He then took a big gasping breath and was fine.

Does anyone have any experience of this and what I should be asking etc..? I know I might not see the same person, but am worried I might still come away feeling none the wiser and unheard. DS2 is about to start crawling and moving around the cot which is going to make our mattress monitor unreliable. In any other circumstance, I would stop using it but don't feel confident to do so at the mo in the current circumstances.

No-one has looked at his tonsils, listened to his chest etc... NHS staff just tell me the mattress monitors are unreliable (which I accept) and that he is a typically-developing baby at the 91st centile for weight!

Any advice/experience would be gratefully received.

Friend's baby had similar problems, ended up having his tonsils out at around 21 months. Sorry that's not much help, but I'd keep pestering them about it.

DD had problems with her ears when she was little and also had enlarged adenoids etc and suffered from sleep apnea.

She used to set off her mattress monitor quite often but as you say it became less reliable as she got older.

After her ear problems were sorted everything sorted itself really and I was told that she had just pretty much grew out of her problems (although that was when she was 4 and a half)

DD was admitted to a sleep clinic at one point to monitor her properly through the night, although the "sleep clinic" was actually just a bed on a post surgery kids ward, so she was disturbed loads during the night with kids crying and being sick and stuff, so I am not sure it was as accurate as it would be if we were at home.

Anyway, i would be asking for them to look at his tonsils, ears etc, just to make sure there is no problems there. You could maybe mention a sleep study, but i think they would maybe consider him to be too young, although I'm not sure.

Good luck, I know it can be worrying

No advice as such, apart from don't leave until you have some answers and a plan of action for diagnosis/treatment!
Don't let them fob you off, you know your own child and your instincts say there's something wrong.
Good luck!

DD also had reflux and sleep apnoea, she would do the same thing you described, ie no breathing for about 10 secs then a big gasping breath. The hospital took out her tonsils and adenoids. She was 3yrs+1m. BTW her tonsils were enormous at the time and this was thought to be closing her airway.

DD had relux and sleep apnoea, our pead was fantastic. Some of the most important things he did was arrange CPR training from the resus unit at the hospital and they gave us a breathing monitor as they had never heard of the one i bought. This one had a pad that was taped to her tummy.

We found domperidone helped as it kept the food down, once the dosage was increased the apnoea incidents reduced.

we were told by the pead that once DD could roll both ways then the risk was significantly reduced as they could roll themselves and get themselves breathing again.

My ds1 has this.
he has just turned 3 and I only noticed it just under a year ago.
He gets tonsillitis alot. He has been referred to the hospital and is due to have his tonsils and adenoids removed next week.
he has his pre-op assessment tomorrow.

My ds1 sleeps with his head right back, trying to keep his airways open.

I don't really know what to tell you. I told the doctors that he constantly wakes, we never get much sleep, he is always tired through the day, so he is suffering all the time.
That I was so worried, that most nights I have him in bed with me.

We have had 2 consultations at 2 seperate hospitals (both agreed to the op, but was a mix-up), but i didn't really have any questions.
The surgeons both seem to think that once the tonsils and adenoids are out that his breathing will even out.

Also, try to get a recording of it tonight.

I did this on my phone and played it to my gp and then to the consultant.

Thanks all. I happened to see the consultant himslef this time and think I have probably been labelled as a fussy mother for the first time!

We have agreed that DS2 will have his oxygen SATs monitored overnight (and I get the impression that this will be done at home by the community nursing team). We concluded that it may be unsatisfactory as the incidents happen sporadically, rather than every night (at least for the 20 seconds required to set off our monitor, although I do hear him taking gasps pretty much every night now I'm not quite so sleep deprived). My hope is that if he has occasional really long incidents that a night-long study will pick up any short ones that otherwise go unnoticed.

I'm happy with this outcome, even if I feel he agreed to it for my beneift, more than due to clinical need. As you have said above, as his mummy, I feel something is wrong and it's my responsibility to do my best for him.

Well done,sounds like you've got things moving in the right direction. Don't worry about being labelled a fussy Mum, you're doing your best for your child. I'd rather be fussy and get it wrong 100 times than ignore a real problem once!

Good point FrameyMcFrame! Will continue our fight.