sleep apnoea in 3 yr old - anyone have experience of this?

[ilovesushi]

I am waiting to see an ENT consultant about my son's sleep apnoea but in the meantime I could really do with some help/ advice/ info/ support.

My son stops breathing several times every hour during the night for about 6-10 seconds a time. His lungs pump away but nothing gets in or out of his nose or mouth. He only gets breathing again when my husband or I poke him.

We are both exhausted from watching over him and very worried. My son has permanent dark shadows under his eyes and is always exhausted, always ill with one infection or another and is pretty cranky from lack of quality sleep!

He has had night time breathing difficulties since he was about 2 months old and we have had lots of panicked dashes to A&E over the last few years. The episodes have become more frequent and his general health and energy levels are suffering.

Anyone know anything?
xxx

We are in the same boat just now, after 3 bouts of tonsilitis. DD is 3 and has enlarged tonsils and adenoids, the pauses in breathing at night have been progressively worse. I filmed it and showed it to my GP and he was a bit non plus to be honest. Said it is scary but that as she got bigger, her tonsils and adenoids wouldn't continue to grow , so would balance out! Hmmmmmm.

I find when she is stretched out, head slightly back on a flattish pillow it's a bit better, I also have Vick on feet with socks, seems to help a tiny bit too.

It's so scary, we co sleep, so I think I possibly get a bit more rest because of that though.

dd2 had moderate to severe sleep aponea until she was 2 - and had her tonsils/adenoids taken out. It got worse and worse until she was not only suffering with the exhaustion, but no longer eating solids and losing weight - really upsetting, and scary.

I feel so when I hear parents being fobbed off with 'oh give it time' type feedback from doctors, because sleep apnoea can be harmful in the long term - and is so stressful for both child and parents in the short term!

dd2 also had a floppy larynx, which confused doctors (and us) for a while, till one of them noticed the size of her tonsils. It helped her to sleep on her tummy as a baby, but not sure if that would make any difference to the apnoea caused purely by large tonsils. Or, as MrsMoo says, stretched out with head back - though she was very noisy that way.

We used a humidifier, which did help a bit, but NOTHING helped like an adenotonsillectomy. I would definitely push for ENT referral, MrsMoo, as GPs are not known to be necessarily familiar with childhood sleep apnoea and its effects.

ilovesushi, I hope your referral comes through soon - and totally understand the need for support in the meantime. I used to feel slightly mad, as dd seemed fine (if tired/dark circled) in the day time, but sounded as though she were choking to death at night - no one heard her like that except dh and me, and it was hard to describe the anxiety of hearing your child struggling to breathe like that night after night. It was a stressful, upsetting time, and I do understand what you're going through and hope its over soon - if its any consolation, the op completely changed our lives, as well as dd's, so when you do get your referral, its good news!

My husband has sleep apnea brought on by quinsy and several bouts of tonsillitis he had to wear an oxygen mask he even slept downstairs before the mask coz he was keeping me awake as he'd snore sooo loud. He'd also fall asleep anywhere in daytime and was miserable. In the last few months however he's been a lot better and doesn't hold his breath even without using the mask. It is an awful thing to live with and hope u can get ur child sorted soon.

There are also 2 different types of SA obstructive is the one were the sufferer will snore and the other SA u don't snore with it. They say there's not much u can do about the second one except O2 treatment

My dd (3.11) also suffered and our experience is also that adeno-tonsillectomy was a miracle cure. Since her operation she is like a different child - bags of energy, newfound confidence and the near complete disappearance of her chest and asthma issues. She breathes silently at night, after sounding like an express train for her entire life. I sometimes just sit listening in amazement at her beautiful nose breathing! I'd push for urgent investigation. In our case we were fast tracked and she had the op within 3 weeks of referral. They can and do act urgently if it is clear that a child is seriously affected, as the adverse impact on development is so great at that age. Good luck - but remember sleep apnea, if that is what your son is suffering from and not a more serious breathing disorder, while a significant issue and v scary to watch is not actually dangerous in the immediate term, so watching and poking him while asleep is possibly not helpful either for him or you.

Thanks so much for your messages. I have been fobbed off so many times by GPs saying children can't have sleep apnoea so it's good to hear other people's stories.

I too filmed my son to prove what was going on and got an immediate referral. He does apparently have very large tonsils so it is really positive to hear that removing tonsils and adenoids have helped other people's kids.

It is true the poking doesn't really do anything much so maybe I should just relax and sleep. And yes lying him flat with drops of decongestant on the sheets seems to help too. We also co-sleep. We didn't for a while but he has got worse and worse. I would be too terrified to have him not breathing on his own.

Thank you all!!!!!
xxxx

OMG GPs that say 'kids can't get sleep apnoea'? Really? That is so my jaw is literally open (rather like dd's was the whole time till her op!)

Yes, ilovesushi, impossible as it seems the only thing you can do is cope with the anxiety and not worry too much - 3 year olds (afaik) do not die of sleep apnoea, its just the long term effects which are a major problem

We didn't co sleep, but had a baby monitor (which I still use when dd has a cold old habits die hard and we're not on the same floor these days) and dh used to turn it down otherwise I'd stay awake, and keep him awake, all night worrying.

When dd had colds and was extra snotty, we did give her antihistamines to dry up snot (ie medised or benelyn night cough) as per doctor's advice - she seemed to relax and breathe easier, whether it was due to less mucous or simply the sedative effect I have no idea. Not saying you should do the same (age limits having changed since then) but you could always talk to your GP about it, if your ds gets snotty colds that make it worse.

Anyway - main thing is, you are on your way to ENT And you are not alone: hang in there!

I"d say the humidifier worked as well as antihistamines, though we sometimes needed both when she was really struggling....have you tried one of those?

I am in the same situation with my DD who is 6. She has large tonsils and the GP suspects large adenoids too as she always mouth breathes, she just cannot breathe through her nose. She snores so loud and has bouts of sleep apnea. She always constantly has a runny nose too, does anyones elses DC have this??

The first GP we went to also said that children cannot suffer from SA. So I made an appointment with our other GP who used to be a paedriatic consultant who said they indeed CAN as he witnessed this in his previous work! We have been refferd and see ENT next week.

Good luck and I really hope your appointment comes though soon. It really is a horrible time for both the parents and children. Please keep in touch and let us know!

Just been reading all your messages and I am now convinced that is what is wrong with my DS. He is almost 4yr and has never slept well at all. Sleeping through is a treat for us. I gave noticed he never breathes through his nose always his mouth and is very restless indeed. He shouts out alot in his sleep too. Always has a runny nose and mild cough. He has just had a bout of ear infections aswell which have been a nightmare. He has list so much weight I can't tell u how worried I am. He ate ok as a baby but since he could say no he is a picky eater to the point now where I am at the end of my tether with his lack of appetite and apart from force feed him I am at a loss. The thing I have noticed aswell is that his tonsils are huge. Could this all point to needing an adenotonsilectomy? Any thoughts as I am going out my mind. Xx

Hi Jen! Well from what you have said and bearing in mind I am not medically trained but have done alot of reading on this, it sounds like he has large adenoids aswell as tonsills which are restricting his nasal airways. Have you been to your GP? I think you should and they should reffer you to ENT. It is a very stressful time to see our little lovelies like this!

Ah thanks funky chickens. It's really stressing me out. I really think it is starting to effect his moods aswell as his appetite. He is so irritable and always tired in the morning. Got an appointment on tuesday and going to ask to be referred. Want to get it sorted before he starts school in September. Don't want it interfering with his schooling!!! Xx

Hiya, my dd has just been referred and fast reached. Consultant surgeon called in loads of others to look her tonsils were so large.

But, developmentally she seems advanced and whilst she stops breathing at night she always starts again so I've never worried

Hi all, I said I would update on what is happening with us so here goes.

We got to see an ENT consultant who confirmed my 3yr old son has sleep apnoea and started the ball rolling in terms of booking a sleep trial. It all seemed like a very long winded and slow process as my son is basically suffocating in his sleep every night and permanently ill. He is rarely off antibiotics and we have spent many a night in A&E.

I asked if we could hurry things along but it didn't seem like it was an option. So while we waited and waited for a date for the sleep trial my son got worse and worse until a couple of weeks ago I went yet again to see a GP who made an emergency hospital referral.

He spent a week in hospital on oxygen including three days in HDU (high dependency unit). Finally we are getting some action and he is due to go back in three weeks for his tonsils and adenoids out. They had to release us before his oxygen levels ever got up to normal as he is physically unable to breathe well enough to get enough air in either awake or asleep.

I was really interested to hear about picky eating as I was starting to think my son had an eating disorder. I had never linked the two things.

Thanks for listening!
xxx