sleep apnoea again - more advice please

[bethylou]

I've posted about this before, so apologies for repetition but need more advice if you can bear to read through my late night ramble..

DS2 is now 7 months with quite severe reflux (and on Omeprazole and Domperidone for it). When he was 6 weeks old we started using a movement monitor when he was asleep as I'd read that refluxy babies could get sleep apnoea and that it might be linked to SIDS. I have since heard that this link has been disproved.

However, we've had two monitors and both have gone off approximately weekly. Recently, it hadn't gone off for a month and then went off twice in 2 days when he had a bad cold. I know that these monitors are considered to be unreliable, but we have picked DS2 up when the alarm has gone off and he still hasn't breathed for a further 10 seconds. Also, last time, I saw him jump and then continue to breathe, as if the alarm was reminding him to breathe.

The peadiatrician has been very dismissive and says babies don't get sleep apnoea (and his registrar's advice was simply to turn off the monitor and not to worry). He finally agreed to have an overnight oxygen study done on DS2. This showed 18 desats during the night, but his average was still 99% (brilliant). The lowest was 92% which is slightly below normal but he did have a cold.

The nurse who brought the equipment to us and analysed the results wanted it repeated but the paediatrician has refused and said that no further action is required. He told her that we might all have apnoeic episodes but are not monitored to know about it and that he doesn't know what normal is for a 'normal' baby anyway. I get the impression the nurse really tried to persuade him and feels that it should be investigated further.

Obviously, I don't want DS2 to have sleep apnoea, but my DH and I strongly believe that something isn't quite right (and can pretty much predict when the alarm will go off, due to DS2 being snuffly etc..) It may be that he has it but nothing needs to be done about it. I'm not a doctor and I just don't know what to think/do next etc.. I have been battling this man for 4 months now and I'm fed up (and have a poorly DS1 too to compound my problems - and add to the title of 'fussy mother' which I'm sure is all over DS2's notes!!)

If you've got to this point in my post, can you tell me what you'd do next? Am I just overreacting like the paediatrician seems to think? Thanks for reading.

Bumping at a more sociable hour in the hope that more of you see this!

Thanks for replying. We only had the monitor for one night and I think it was set to go off at 90. Our mattress monitor is only an over the counter motion sensor that is frowned upon by the NHS, hence the fact that I am getting nowhere fast. The nurse was interested that the motion sensor didn't go off when he got to 92, suggesting that he does go lower before our alarm goes off usually.

Well done on the nappies by the way - I've been following for a while as I teach children with severe and complex learning difficulties.

Hi. Back on again having got both kids to sleep for a bit. I think the most I can hope for at the mo is to get the study repeated. I feel safer knowing that our monitor goes off than if I turned it off. I'm hoping that DS2 is growing out of these episodes of whatever they are and won't therefore need a monitor long term.

hi beth my daughter as had blue episodes since two week old , we rushed her in to hospital many times as the midwife was there once when she went blue, they never found the cause and still on going we now have a monitor from the hospital goes off when she stops breathing most of time we just need to move or flip her as i say, we have had a sleep study done showed she had sleep apnoea and took her tonsils and adonodes out early this year, but she still as it so waiting now for an other sleep test and they think her tube could be narrowing she is 3 now. hope you get sorted soon dont let it drop if you know in your heart.

Thanks Trace2. The nurse was clear that she knows children/babies who do it. We have got to look closely at DS2's colour next time it happens. I have to say it mostly happens in the night when we are in the dark and we don't bother to turn the light on. If he is blue, I know people will take us more seriously. May I ask how often it happens with your DD? The paediatrician also dismissed us because it only happens about weekly.

she can go months with nothing happing, please turn the light on to see what colour and where it makes a difference to what it can be, where my dd goes blue from the top of her head down and some can be just round there mouth, try to look at there tongue, then when you know where and what colour they will believe you . good luck let us know what happens

oh and my dd had very bad reflux had an opp to stop it happening to see if that stopped some of it.

Hi Beth,
Our dd2 has sleep apnoea and sleep hypopnoea and paradoxical breathing - we knew she has disturbed sleep but had no idea of all this till they had done a sleep study. Her sats drop to the mid 70s but recover when she starts breathing again. However, as hers is related to her other disabilities which won't get better, they have got her a CPAP machine, which we are trying to get her onto.

If your ds has reflux, have you tried tilting his sleeping position slightly to put less pressure on the stomach when he is lying down? Do you think the reflux is connected to his sleep patterns?

Thank you both for replying and sorry to hear you also have similar (and probably much more complex) difficulties to deal with. Trace2 I will make sure we are more on the ball re colour next time. I certainly thought it was reflux-related initially but now it happens when he has a bad cold so we'll have to keep a log I think. It's interesting that it doesn't happen very frequently to your DD either (although I wish it didn't happen for you at all too!)

Meltedmarsbars we have got DS2 very tilted and bizarrely he sleeps much better now that he has chosen to sleep on his tummy, now that he can roll. I have always assumed a link with the reflux, but it's all based on guesswork really.

I tried to book an appointment with the nice GP who has been helping us but he's full tomorrow and then I have to ring to see if there's a space on Wednesday - a very annoying system. I think I need a referral to a different hospital as we're getting nowhere fast with the paediatrician we are currently seeing.

Hi all I know this post is incredibly old but OP I was wondering if they ever got to the bottom of it all? I am convinced my 4 month old has SA and he has had a monitor since he was 2 months but it's only gone off this last week when he has had a cold... what does it all mean?

Thanks