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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

Gileswithachainsaw · 10/03/2015 09:09

I don't think.you are neurotic.

sometimes we just know

IreneA78 · 10/03/2015 09:09

I get that you are worried but for goodness sake!! The A & E doctor has seen her, your GP has seen her and said this poses no immediate risk to her, let alone all the paeds you have seen.You need to trust them and STOP WASTING RESOURCES!!!
You are using a monitor designed for a baby, on a much older child!Throw the bloody thing out!
I seriously think perhaps you need to see the GP yourself.This excessive anxiety about your child's health is often a sign of depression!

maplebaconchips · 10/03/2015 09:12

Trust your instincts, Countrymummy, there will always be people who try to say you are overprotective, or crazy, but you know something is wrong, and your dd needs you to fight for her. Try and ignore unhelpful people as much as you can, it hurts, I know.

Gileswithachainsaw · 10/03/2015 09:13

be case drs are never wrong are they..

conditions can be rare. but they exist. someone suffers from them.

rare or complex problems are misdiagnosed all the time be case they are rare and few drs know about them. or believe they will ever actually see a case.

has it not occurred to anyone that the reason for any perceived neurotic behaviour is not be case op is naturally like that but because she's known for two years something is wrong and no ow s listening or considering the full picture.

how would any of you react of you knew something was wrong and teh explanations never truly fit

Original poster

CountryMummy1 · 10/03/2015 09:13

Well, the out of hours doctor has just phoned me back after he has watched the videos of last night that I emailed to him as requested. He agrees that DD has severe sleep apnea and needs to be seen asap, preferably today. He has made me an appointment with my GP at 10.30 as he should be able to get DD in for an assessment on the children's ward so fingers crossed!

OP posts:

Gileswithachainsaw · 10/03/2015 09:15

Good luck

I think.you are incredibly brave and a wonderful mother to keep fighting no matter how crazy people think you sound.

zzzzz · 10/03/2015 09:21

This reply has been deleted

Message withdrawn at poster's request.

OddFodd · 10/03/2015 09:23

That's great news. Hope they can sort it out. But what zzzzz says is true. It's exhausting maintaining that level of anxiety so you do need to take very good care of yourself.

canyou · 10/03/2015 09:23

I am glad some one is helping. A word of advice make copies of the dc asleep and bring them to every consultation. Keep written records as well for yourself.
Dont be surprised if they remove her adenoids and tonsils (sp?) My DNephew had his removed even though they were not enlarged and it did help.
Good luck

WayfaringStranger · 10/03/2015 09:24

It's completely understandable that you're anxious. Sleep apnoea is terrifying to observe and it must be horrible to see your child struggling to breathe. I think that unless it's your child lying there, it's easy to be blasé. However, sitting in A&E will make you seem neurotic because as scary as it is, this is not an emergency situation. They are taking you seriously and they do know what's wrong. Ask for an urgent referral to ENT and do speak to your GP about how this is making you feel. They will take your daughter's medical needs seriously and maybe they will be able to support you. I'm not saying that it's not usual to feel anxious but it sounds like it's really destroying you and you are worthy of help too.

Bakeoffcake · 10/03/2015 09:24

So pleased Country that you will be seen today. Hope they get to the bottom of it.

WayfaringStranger · 10/03/2015 09:25

I didn't see your last post. Great news! Take good care of yourself too please. :)

maplebaconchips · 10/03/2015 09:30

What great news that you are finally being taken seriously, if you had given up and accepted the neurotic label, she would not be getting the urgent care she needed, you are so strong. It must feel like such a relief to get some help at last, and also to feel vindicated. Take care!

AvonCallingBarksdale · 10/03/2015 09:36

Sometimes you do need to stamp your feet and push, and sometimes you feel desperate, as though no-one is listening, which is when one can feel desperate enough to make a wrong decision, such as calling an ambulance, which would have been totally wrong in this instance. That's great that you now have an appointment for your DD. Hopefully you'll feel less anxious, too, now that something is being done.

miniavenger · 10/03/2015 09:41

Video it, for sure, sometimes people can't appreciate how it truly is and think there's exaggeration- especially doctors, since some -dickhead- people do exaggerate to get seen faster and some people get confused when fearful. A video will show the trauma for what it truly is and may well clue them in faster

I'd also see another GP, sometimes people can get stuck in a 'oh no not her/him' mindset and write you off before starting. I had some issue with my GP when I kept going in for a recurrent problem. She assure me there was no way- she guaranteed it- that the pain was as bad as I thought it was and that it was caused by what I (and numerous people I knew suspected). Less than a month later I was on the operating table having emergency surgery for said issue, I changed my GP shortly afterwards.

A video would have made little difference for myself, I had to physically collapse but for you OP it will highlight what you've been saying and if the GP does think you are exaggerating or being paranoid then it will show that this isn't true.

Original poster

CountryMummy1 · 10/03/2015 09:42

Thank you everyone! That's interesting to know that they do sometimes remove tonsils and adenoids even though they aren't big. DD has every symptom of something blocking her breathing. She always mouth breathes, day and night. She's also as deaf as a post at the moment despite passing all previous hearing checks. Hopefully some light can be shed on the situation soon.

OP posts:

miniavenger · 10/03/2015 09:43

Crossposted with your update. Glad to see you videoed and another doctor saw it and is pushing forward. Good luck.

ColdTeaAgain · 10/03/2015 09:49

Great that something is being done, you have done the right things by pressing for a referral and providing evidence of her behaviour while she sleeps.

To those on the thread with suggestions of 999 and ambulances, ffs that is the sort of attitude that has A&E in the state it's in atm. Think about what you are suggesting...blue lighting in a child for sleep apnoea! This is a condition that people live with for years and years without even realising, it is distressing to watch but not an emergency!

Do also discuss the monitor with the doctor aswell and ask of they think you should be using it...I suspect probably not. I completely understand you are nervous to turn it off but it really can't be helping your own health as you aren't sleeping much by the sounds of it!

Good luck with it all OP.

unadulterateddad · 10/03/2015 09:49

Your comment regarding lack of hearing is an important one - enlarged or problem adenoids will cause this (sort of glue ear like symptoms) so it's highly likely they will take out tonsils and adenoids

Good luck and hope all goes well for your DD

DontDrinkandFacebook · 10/03/2015 09:49

Great news, I hope you finally get some positive action now.

Perhaps she has glue ear as well?

mawbroon · 10/03/2015 09:53

I can understand why you are anxious. DS1 had bouts of apnoea which were far less frequent and much shorter than your dd's, but it was still really worrying.

He also had a heap of other things going on too, just like the ones you mention - snoring, mouth breathing, teeth grinding. His speech was fine, but he also had gastric problems, ENT troubles (fluid in the ears at each audiology appointment, slight hearing loss and noise in his ears). He also had sore joints and pins and needles amongst various other things.

The root cause of all this was an undiagnosed posterior tongue tie and high narrow palate.

Revision of the tongue tie and 2 years of orthodontics from age 7 to 9yo sorted every single problem.

I was poo pooed by all the doctors who saw him and I had to figure all this out myself and get private treatment. I was seen as the anxious mother when there was "nothing wrong" with DS1 and further poo pooed when I suggested that this was all linked to his tie and high palate. It was so bloody stressful after years and years of knowing there was something not right and my god the relief I felt when I finally found people (dentists btw) who understood what I was telling them and were able to help.

Does she have anything else going on? How did she do with milk feeding (either breast or bottle) and solids? You mention speech problems too which can also be caused by a tongue tie. I would suggest that you investigate along these lines as well.

wfrances · 10/03/2015 09:57

ive been told by a pead neurologist the brain will wake the child up before any damage done.
ds 11 has migraines and vomits in his sleep ,i was worried incase he wouldnt wake up and choke but neurologist said no chance ,if he couldnt breathe whilst sleeping ,his brain would wake him up .
apparently the only time it wouldnt be guaranteed in a healthy brain ,would be if something had sedated the brain like a huge amount of alcohol.

Original poster

CountryMummy1 · 10/03/2015 09:59

She has a severe lip tie and I have often wondered about posterior tongue tie. Terrible feeder when a baby, couldn't latch, thin as a rake etc. Her upper teeth seem pushed forward and a bit goofy

OP posts:

SantasLittleMonkeyButler · 10/03/2015 10:02

Hooray for the Dr who watched your videos & got in contact with you!

I would be incredibly worried too (although I don't doubt the Drs are right that DD will always start breathing again eventually).

In all honesty, I don't understand how anyone can see their 3 year old child stop breathing in front of them & not be worried . It's a human response.

Best of luck for today .

mawbroon · 10/03/2015 10:07

Lip tie you say? The professionals who are dealing with ties are quoting a 90 something percent incidence of tongue tie (usually posterior) when there is a lip tie present, so the chances are that she does have one.

Don't mess about with normal docs re this. Get yourself straight to somebody who knows what they are doing

Where are you based? Can you get to London to see Dr Levinkind? We travelled a 400mile round trip to get ds1 revised a second time after a guy here failed to do it properly.

It's not to say that there might not also be tonsil/adenoid problems, but even if they were removed, there could still be problems caused by a tongue tie.

Have a look at Brian Palmer's website. He has a presentation on sleep apnoea which is very interesting. He looks at how the oral structure can cause apnoea. A posterior tongue tie can distort the orofacial structure significantly. This happened to ds1, but you wouldn't know to look at him unless you knew what you were looking for.

Photos on my profile btw

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