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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

122 replies

CountryMummy1 · 10/03/2015 06:51

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.

OP posts:
mawbroon · 10/03/2015 10:18

And pushed forward front teeth can be caused by tongue thrusting. Yes, DS1 was tongue thrusting too!

When you swallow, the tongue should raise to the roof of the mouth. When the back of the tongue is tied down, the swallow action can't be completed "correctly" and the tongue goes forward instead, or out to the sides, or a bit of both. This can cause problems such as you describe.

DustyBedhead · 10/03/2015 10:29

Great news your dd being seen today Smile

IreneA78 · 10/03/2015 11:32

In your earlier posts you made no mention of being requested to send in a video?

You said you went to the A&E department and then your GP surgery the next day.But it was the out of hours doctor who phoned you back the next morning? So who did you send this video to?

MiaowTheCat · 10/03/2015 11:39

This reply has been deleted

Message withdrawn at poster's request.

PurpleCrazyHorse · 10/03/2015 11:55

Great news on videoing the sleep apnea, did you do that before starting this thread? The key is to be factual, and if you can video what's happening or make detailed accurate notes, it helps the medical team (and makes you seem very reasonable).

Hoping your DD gets the treatment she needs.

Memphisbelly · 10/03/2015 12:05

I had sleep apnea as a child, I used to snore so loud the sound proofed my room, then the apnea started, mum would have to shake me awake, I was refered to ENT and diagnosed with severe apnea, within a week of referal to ENT they took my tonsils and adonoids out (they were normal size and never caused me problems before) and the snoring and apnea stopped that day.

Glad you have been taken seriously and will hopefully be seen asap.

CMOTDibbler · 10/03/2015 12:10

Miaow - your dhs GP is absolutely, 100% wrong on the CPAP machine. My dhs machine makes a tiny amount of noise. I've very happily slept next to it for 8 years now.
Go back to the GP with your dh having done an Epworth sleepiness questionairre and videoing him sleeping. You can reference the NICE guidelines on management of OSA in the primary setting as well. Don't be fobbed off with an ENT referral either, it needs to be a sleep specialist

mawbroon · 10/03/2015 12:11

WTF Miaow!

There are loads of folk on here who have partners with CPAP machines and many of them say that the sound of the machine lulls them to sleep and is a million times better than the snoring/snorting that was happening before!

I'd be going to another GP if I were your DH

mawbroon · 10/03/2015 12:12

x post!

frumpet · 10/03/2015 12:26

Miaow were you in the consultation when the GP told your DH that ? Only ask because a friends husband told her very similar , she then discovered he had decided he didn't want to try one Hmm

Booboostoo · 10/03/2015 13:23

My DH has the machine and it is either completely quiet or makes a tiny bit of noise. DH's snoring before the machine could be heard through-out the house. Despite having severe apnea it took a very long time for him to be diagnosed but the difference in him after the machine was incredible.

He went to a private clinic in Lomdon, pm me if you want details.

Viviennemary · 10/03/2015 13:34

A lot of medical professionss have said there is nothing wrong. But you are not satisfied. I would make an appointment with a private medical doctor and ask for a throough checkup . There must be some reason as to why you can't accept medical opinion so far. I certainly would call an ambulance as they are for emergencies only.

ChiwetelFan · 10/03/2015 13:40

Miaow, hope you don't mind I've PM'd you

cottageinthecountry · 10/03/2015 13:44

Great news OP that your dd is getting help now.

You have done the right thing to trust your instincts and anyone that says you are not listening to professional advice can go and take a running jump.

As an extremely easy-going non anxious parent I have made some serious mistakes by listening to medical professionals. Now I am assertive and inquisitive and make sure they don't let things slide.

:)

juniorcakeoff · 10/03/2015 13:55

Just a couple of points - you may need to change the sensitivity of your angelcare monitor if using a thick mattress and your child is moving around, the sensor pad is designed to go under the breathing (chest) area and not go off unless no breathing has been detected for 20 seconds. Although it says it can be used up to preschool age most people stop using it when babies start moving around as it goes off all the frigging time.

Secondly one of mine was diagnosed with sleep apnoea - we did not have a monitor, he started frequently waking and crying so kept him in with us one night to see what was causing it and he was stopping breathing. l. It was huge tonsils and enlarged adenoids that was causing it, the GP observed the tonsils and then referred us to paediatrician. There was no real sense of urgency such as you describe from the out of hours doctor, it was a normal paeds referral from GP. The apnoea was causing problems due to overtiredness during the day rather than any real urgent health issues (although I feel his growth and appetite were affected).

ShootTheMoon · 10/03/2015 14:11

countrymummy I am late to this thread but I'm glad you're getting an appointment urgently.

I couldn't agree more with the comments about lip ties and tongue ties. Having my daughter's lip tie revised made a massive difference to her eating and weight gain as a 14 month old. I have both lip and tongue ties which I am seriously considering having revised - I suffer teeth clenching, bruxism, tongue thrust, fatigue, migraines, muscle tension, sinus problems, hearing loss, etc. There are some (admittedly under-researched) links between all of these symptoms and ties. When I watched this video: I cried - her experience so matches my own.

I have a high palate and PTT and until recently had lip ties as well - that was until I had a jaw surgery, and they had to cut through them. My surgery was to correct the open bite which was a result of tongue thrust and teeth grinding. I'm still doing both of the above, but my bite is closed - for now.

I know all of this may seem irrelevant but I had endless ear infections, sleep issues, high pitch deafness etc as a small child. I really recommend Dr Levinkind, who can do a laser revision. It's a minor procedure without anaesthetic - not pleasant, but it heals quickly. I'd recommend reading up on ties and considering consulting with him.

But more than that, good luck with the appointment and I hope you're all able to get some sleep.

Starlightbright1 · 10/03/2015 14:32

Hope Appointment has gone well and now been assessed

youarekiddingme · 10/03/2015 18:59

Glad someone listened. It's horrific when your fobbed off as neurotic.
If and when u I get a achieve can you let us know how you and DD are?

RestingFuckFace · 10/03/2015 19:28

How did it go OP? Ive been thinking about you guys today. I was one of the ones that put my hand up and squealed 'adenoids!' in your previous thread.

For what its worth, I have tiny tonsils but had enormous adenoids and suffered greatly with them.

So the tonsil-adenoids link is BS.

From what I know if the tonsils are huge the adenoids often are, but not the other way round. Although someone might put me right with that.

BlinkAndMiss · 10/03/2015 19:40

I hope everything went well with your appointment, it's terrible that you've been treated like a neurotic for so long and had to watch your poor DD suffer. It's difficult trying to get someone to listen to you but hopefully the dr will find some treatment to make a start today.

Good luck OP, I hope your DD starts to improve soon she's very lucky to have a mum like you.

Bonbonbonbon · 10/03/2015 19:50

Miaow, that is rubbish advice from your dh's gp. My DH was diagnosed with sleep apnea and prescribed a cpap machine. He sleeps much better now, no longer falls asleep from exhaustion during the day, and no longer snores like a train. I would say the machine probably SAVES marriages--his snoring was so loud you couldn't escape it and disturbed my sleep terribly.

There can be lots of negative side effects with untreated sleep apnea. Get a second opinion.

Patatas · 10/03/2015 20:10

I hope today has gone well op, what an incredibly stressful and worrying time for you. I hope action is being taken.

Agree with others that doctors respond best to facts, written logs etc.

misdee · 10/03/2015 20:26

Am half the doctor took time to watch your video clips. Hope Something has happened to help today

pantsjustpants · 10/03/2015 20:47

Op, I'm so glad you're getting some help. My 3yr old ds has sleep apnea, has done since tiny, so I know how worrying how it is. Luckily I have a fab gp who realised that I wasn't just being neurotic, so we've been in the system for about a year. Currently undecided about removing tonsils and enlarged weeklies as he has improved slightly.

Really interested in the info above, ds grinds his teeth amongst other symptoms.

OhGood · 10/03/2015 20:51

Put a video camera in her room and video her for a whole night, or as much as you can. Record it all.

Then sit and assess with your GP or her consultant. They will either see you are right, or you may be able to take some comfort from their reassurance.

I'm so sorry this is happening.