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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Sleep Apnea in Children - experiences please

26 replies

ENTnightmare · 30/03/2023 11:46

As per my name my daughter has been experiencing a lot of difficulties with enlarged tonsils and adenoids. This has been having a knock on effect in terms of development. I have did some research and have found many things which ring true for us.

Most worryingly I think her cognitive development is being affected. She only has a few words and her memory seems to be poor, i.e. we were looking at flashcards of words I know she knows well and she came across one and tapped her head as if to say 'I know this but can't remember'. I said the word and she immediately say it after.

Just wondering if anyone could share how their child's cognitive development was before surgery and also if it improved at all after.

Really grateful for any replies from an exhausted, desperate parent.

OP posts:
Original poster
ENTnightmare · 30/03/2023 20:39

Hopeful bump

OP posts:
Pinkflipflop85 · 30/03/2023 20:56

How old is she?

Original poster
ENTnightmare · 30/03/2023 21:09

Pinkflipflop85 · 30/03/2023 20:56

How old is she?

She is 2 and a half

OP posts:
Choconuttolata · 30/03/2023 21:14

Behavioural issues pre-op, very prone to epic tantrums, illness and sleep issues. Weight loss. Post-op at 2.5 years went from below bottom centile to 50th and it was like having a different child, much happier, wasn't unwell all the time. Academically is working well above the average now at age 10.

ipswichwitch · 30/03/2023 21:15

DS had this, and ended up having tonsils and adenoids out just before he turned 3. He was very small, a late talker (only had a few words at the time of surgery), and his sleep was awful since he’d wake screaming every time his breathing stopped.
after surgery, the snoring stopped, the apnoea disappeared and he had a massive growth spurt - probably linked to the massive improvement in sleep. His speech came on in leaps and bounds very quickly too. I figured the poor kid was so knackered all the time his brain couldn’t take on any more in terms of development.
is your DD being referred for surgery?

Original poster
ENTnightmare · 30/03/2023 21:22

Thank you @Choconuttolata and @ipswichwitch that is great feedback.

We are referred on NHS but also seeking private consultation as keen not to wait.

My DD has very little speech and her attention and concentration is poor (she is on my 2.5) so hoping the surgery addresses this as speech and language therapy without attention and listening is very, very difficult.

OP posts:
Original poster
ENTnightmare · 31/03/2023 10:40

Those who have experienced sleep apnea, did your child sleep with their eyes partially open?

Mine seems to and I guess this is another thing which would contribute to a lack of rest.

OP posts:
Original poster
ENTnightmare · 05/04/2023 09:27

We have been given the go ahead for the sleep study with a view to remove both tonsils and adenoids!

We have to do it at home, what should I expect?

OP posts:
Pinkflipflop85 · 05/04/2023 13:18

ENTnightmare · 05/04/2023 09:27

We have been given the go ahead for the sleep study with a view to remove both tonsils and adenoids!

We have to do it at home, what should I expect?

You will be shown how to operate the machine. Then you just tape on the sensor (ds always wore his on his toe) and leave him to sleep.

Original poster
ENTnightmare · 05/04/2023 20:53

Thanks @Pinkflipflop85 can we see the stats as she sleeps or is it stored and printed out as a report?

OP posts:
Pinkflipflop85 · 05/04/2023 21:01

It is stored and printed out.

Therapistmothermaid · 05/04/2023 21:16

If there is an allergy making it worse a nasal steroid can help. The most effective treatment is the removal of the tonsils and adenoids if they are what is causing the obstruction, but in the mean time might be worth investigating whether there are also any contributing factors like allergies, and whether a nasal steroid might help

Nannylp · 09/04/2023 22:02

Can I ask which consultant you saw? My 7 month old son has had 2 hospital stays due to his obstructive sleep apnea and we've just been waiting and waiting for the NHS referrals to go through for paediatric ENT, both at our local hospital and at the Evalina.
I'm really losing patience with it all and considering paying to see someone privately.

boymum9 · 09/04/2023 22:30

Just a note to say we are now looking for go privately, ds was given the go ahead for tonsil and adenoid removal about 1.5 years ago and still waiting.
He was a late talker, speech issues, sleep is awful and snoring is very bad and is constantly waking himself up. He is extremely hyperactive and the consultant said it could be that he is eventually diagnosed with adhd but it's very likely that it's actually stemming from the interrupted sleep. He's 5.

Jenn3112 · 09/04/2023 22:53

No cognitive impairment but DS was hardly growing, definitely impacted both sleeping and eating. After surgery just before 3 he put on weight and started growing and was just more well almost immediately. He was the younger child and spoke relatively early but walked later than his brother, his brother actually did have a speech delay and had speech therapy, hearing tests etc and we used Makaton but eventually it jut worked itself out. Is speech the only problem - can she follow instructions, is her co-ordination and physical skills age appropriate etc?

Diversion · 09/04/2023 23:04

DD had this and almost gave my Mum a heart attack when she slept over one night. We have a family history of very large tonsils which she had removed plus adenoids. She had both removed age 3 and the sleep apnea stopped very soon afterwards

Original poster
ENTnightmare · 09/04/2023 23:43

Jenn3112 · 09/04/2023 22:53

No cognitive impairment but DS was hardly growing, definitely impacted both sleeping and eating. After surgery just before 3 he put on weight and started growing and was just more well almost immediately. He was the younger child and spoke relatively early but walked later than his brother, his brother actually did have a speech delay and had speech therapy, hearing tests etc and we used Makaton but eventually it jut worked itself out. Is speech the only problem - can she follow instructions, is her co-ordination and physical skills age appropriate etc?

Receptive understanding is a worry, although she suffered from glue ear for a long time so hard to know the effect that has had on receptive understanding.

Coordination seems ok, fine motor skills are good. Gross motor balance is poor though and she was assessed by an OT who seems go think it is vestibular and should be corrected when ENT issues are resolved.

OP posts:
OliviaFlaversham · 09/04/2023 23:49

Jenn3112 · 09/04/2023 22:53

No cognitive impairment but DS was hardly growing, definitely impacted both sleeping and eating. After surgery just before 3 he put on weight and started growing and was just more well almost immediately. He was the younger child and spoke relatively early but walked later than his brother, his brother actually did have a speech delay and had speech therapy, hearing tests etc and we used Makaton but eventually it jut worked itself out. Is speech the only problem - can she follow instructions, is her co-ordination and physical skills age appropriate etc?

I could have written most of this. My child’s behaviour seems to really be affected by it and even though we know this and the school also do, it doesn’t help. It’s taken months to get referral through and the appointment to see paeds is still months and months away. Am looking to go privately but cannot find somewhere local.

Original poster
ENTnightmare · 10/04/2023 00:03

@OliviaFlaversham what are you being referred to peads for if you don't mind me asking?

OP posts:
OliviaFlaversham · 10/04/2023 00:19

ENTnightmare · 10/04/2023 00:03

@OliviaFlaversham what are you being referred to peads for if you don't mind me asking?

For the sleep apnoea. Separate referral to audiology which we still don’t have a date for (referral link takes us to a page stating there are no available appts and someone will call us by the end of May). For that we are getting a private assessment done.

I am so cross about it all.

Original poster
ENTnightmare · 10/04/2023 00:39

It's different here, we got referred to ENT and they can refer to audiology. We could have went to audiology but once under ENT you can't go to audiology direct anymore.

OP posts:
OliviaFlaversham · 10/04/2023 00:48

It has already been months and months since we initially went to GP. It affects our child so much and yet will be ages to be seen. I honestly think we are going to need to go private for ENT as well as audiology.

GP appointment was last year. Referrals for Paeds (ent) and audiology agreed. Didn’t come through for months and then to still not have an audiology appointment booked in by April is ridiculous. All this time affected. Feel stuck.

saltwater1985 · 10/04/2023 01:06

My youngest two both had OSA and had tonsils and adenoids removed aged 4.

Both recovered well post op, sleep improved 100%.

Original poster
ENTnightmare · 10/04/2023 09:10

OliviaFlaversham · 10/04/2023 00:48

It has already been months and months since we initially went to GP. It affects our child so much and yet will be ages to be seen. I honestly think we are going to need to go private for ENT as well as audiology.

GP appointment was last year. Referrals for Paeds (ent) and audiology agreed. Didn’t come through for months and then to still not have an audiology appointment booked in by April is ridiculous. All this time affected. Feel stuck.

This really is ridiculous. ENT issues are so debilitating and they have such a knock on effect on other things.

What all issues are you concerned about?

OP posts:
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