To refuse to leave the Drs/A&E until someone helps my child

[CountryMummy1]

Long story short..... I have always known something was wrong with my DD(3). Mouth breathing, snoring, teeth grinding, speech probs. She has seen numerous community pads who said she was fine. One looked at her tonsils and said they were fine so adenoids were probably fine too. She has fluid in ears but it was put down to a recent cold.

I have always had her on an Angelcare monitor as her breathing has always seemed a bit laboured when she was asleep. The last few nights the alarm has gone off constantly. She is stopping breathing for up to 2 minutes and I have to shake her to breath. We went to A&E the night before last who said it was sleep apnea but they couldn't admit her, I needed to go to Drs for referral to ENT which I did yesterday.

I can't take another night like last night. She stopped breathing hundreds of times an hour, sometimes for minutes at a time. I can't let her go to sleep again until she is in hospital. I need to get some help today and I don't care if I have to refuse to leave A&E and get arrested.

I am an anxious mother you're right but a lot of it is because I have had an unwell child for 2.5 years and have never had any answers.

No no no! Don't ring a bloody ambulance. It makes no difference to how you're triaged in A&E.

Christ I wish people would stop peddling this crap. Did you know it costs nearly £300 to deploy an ambulance?

OP - take your DD to your GP and ask for an urgent referral to ENT.

It sounds like a dentist appointment would be sensible as well as an ENT referral.

Sleep apnea is common though and while it must be very worrying, if your DD's health were at serious risk then you would not have been sent home. The monitor certainly isn't helping either of you - chuck it away.

It does sound as if you need some help too, as you seem very anxious despite having been reassured numerous times by medical professionals.

If you can't bring yourself to chuck the monitor away at least record the times it goes off. If you tell a doctor/professional that it is going off "hundreds of time an hour for minutes at a time" - well, you know that can't be right.

The alarm went off 12 times last night, indicating she had stopped breathing for over 20 seconds. I counted the number of times she stopped breathing for very short periods and then gasped herself awake and the highest number was 103 times in 1 hour

Is it possible for her to sleep on pillows so that she is not lying flat? This may make it easier for her to breathe. My sympathies - my son had apnoea and did have an operation. I videoed him as he slept and the GP immediately referred hi. However it was obviously due to enlarged adenoids so more straightforward than your DD.

Definitely sounds like Sleep Apnoea to me and I've had it since I was a kind (although lived with it for 30 years before getting it treated). Firstly don't worry that she's stopping breathing -she will start again on her own and it won't do her any harm in the short term. When you've got a referral to your nearest sleep clinic they will do an overnight study to confirm SA. Make sure your GP gets you a referral to a sleep clinic asap or go private (if you can) as it is the best place to get treatment.

Gosh how scary. I don't blame you for being so anxious.

Could you go to your Gp today and say you need an urgent referal?

kid not kind

Just as an aside, walkacross my son has sleep apnoea. He was monitored overnight at the hospital a couple of years back and the reason he was issued with a cpap machine is that he stops breathing up to 80 times an hour, sometimes for up to two minutes.
Perhaps a little thought and kindness when someone is in distress.
OP GP needs to do an urgent referral to the sleep clinic. You must be very distressed. I hope it gets sorted.

Has something changed recently? Has the alarm only recently started going off? Are you sure she isn't moving off the mat, or that after 3 years of use the angel care system is getting a bit old? If it really is going off 100s of times and hour she would have to hardly be breathing/moving at all, I think I'm right in that the monitor goes off after 20seconds of no movement/breathing, so even if she stopped breathing every minutiae with the time it would take you to shake her, for her to wake, breath and fall asleep again I wouldn't have thought it would be possible for it to happen 100 times in an hour, especially if some of those times have been for a few minutes each. It really does sound like your monitor is broken of badly placed.

The alarm went of 12 times last night indicating a pause of 20 seconds. That is what you need to tell your doctor. The other times "for a few seconds " are unlikely to be significant, a sleeping child can have as few as 10 or 12 breaths a minute and be fine.Is there something which you rink has made it worse recently ? A cold or a change in sleeping position ? Some young dcs do better on their fronts.

I wasn't being unkind by suggesting you monitor the times, it just would be helpful to healthcarers to know exactly how often and for how long rather than possibly overstate it. Your anxiety is palpable and I hope you find some help.

My DS also has sleep apnoea. I know how horrible it is but the worst effect of it is that it sounds awful and it really disrupts the sleep patterns of the person suffering from it (as well as for the person listening to them).

I would ditch the monitor because I don't think it's helping.

Sorry just reread your OP again and see you've been to the GP to get the referral to ENT. How long will it take? Have you also asked for help with your anxiety?

My son had sleep apnea and I barely slept at all. I used to shake him gently when he held his breath for so long.

It was horribly frightening. His was due to large tonsils and they were taken out in the end, but I will never forget that fear.

They wanted to put him on some machine but the consultant said it was go off all the time and worry me more.

I remember shaking him thinking he was never going to breathe again, despite the drs telling me he wouldn't just stop breathing.

I hope you get the help you need soon

As I understand it sleep apnoea is a problem because it affects other aspects of health because of disturbed sleep. The actual stopping breathing is not dangerous and I agree with PP who said turn off the monitor.

Your daughter does need help but A&E isn't the place to get it, it sounds like the GP is on the case now. Unfortunately it will take a while to get a referral but meantime your DD is in no danger, so please try to relax.

Walkaccrossthesand has a point about the exaggeration

FWIW a friend's DD was clearly not thriving as a tot and it took a long time for doctors to identify the problem, but once sleep apnoea was diagnosed and treated, the change in her was amazing. It was a miracle overnight cure (or within a week anyway)

Sorry cross posted with you op, from your op I assumed the monitor was going off a hundred times in an hour.

My dp has sleep apnea but only when he gains weight, I wonder if it's the same for children, his apnea comes on quite suddenly when he goes over a certain weight and disappears almost immediately when he goes below a certain weight.

If I were in your situation I would also be very concerned, I don't think you are being overly anxious, it's your young child's breathing, breathing problems really worry me as breathing is so important.

The thing which would concern me most is the speed at which it has come on, have you had alarms go off before?

Can you pay to see someone privately? I'd be tempted.

Brokenhearted, please read my explanation previously. The monitor went off 12 times last night indicating 12 instances of no breathing for more than 2 minutes. Her usual stopping breathing of up to 10 seconds then gasping happened over 100 times in one hour as I videoed the whole hour.

Sorry, I meant 12 instances of not breathing for more than 20 seconds. Her longest not breathing was well over a minute before I had to shake her awake

Oh it doesn't matter trying to explain anyway. I have been treated like a neurotic for the last 2.5 years when I KNOW there is something wrong with my DD, a few more people indicating that I'm a fruit loop on here won't matter.

You know there is something wrong ... She has sleep apnea- you have a referral - your gp is right

How worrying for you. You definitely need help for her. Stopping breathing for over a minute is NOT normal and you are NOT neurotic. I can't believe that people are saying to switch the monitor off. I would say that switching the monitor off would not allow you to sleep better but, in fact, leave you lying awake listening for her breathing. Make an urgent GP appointment for this morning. Show them the video that you have taken, I am sure that you will get an urgent ENT referral based on what you have told us. Good luck OP and I hope hat everything improves for you soon.