sleep apnoea

[lindy-lou]

India was admitted to hospital for a sleep assessment last night,it was to determine wether or not she is suffering sleep apnoeas before the consultant will prescribe any sleep meds,well she had 6 sleep apnoeas while the staff were observing her and set every alarm off she had attached to her about 12 times,we are to see the paed again on 16th feb,they discussed removing her tonsils and adenoids today as her tonsils are huge,she speaks very nasally and dribbles constantly,so no sleep meds for us

[oracle]

My eldest none ASD son has this condition. He had his tonsils and adenoids removed when he was 10 years old so that can not be the cause behind his problem.

 

He shares a room with my 18 year old AS son who counts to see how long it is before he takes another breath if it's too lomg he panics and give him a kick which eldes is not too happy with. He was given a machine to wear every night but it was dreadful and he was so uncomfortable wearing it so now he has nothing

 

Carole

[phasmid]

Hi Lindy, I suffer from this condition myself. I know that removing tonsils may well help. I hope they get this sorted out quickly for you.

[lindy-lou]

My eldest none ASD son has this condition. He had his tonsils and adenoids removed when he was 10 years old so that can not be the cause behind his problem.

 

He shares a room with my 18 year old AS son who counts to see how long it is before he takes another breath if it's too lomg he panics and give him a kick which eldes is not too happy with. He was given a machine to wear every night but it was dreadful and he was so uncomfortable wearing it so now he has nothing

 

Carole

 

so you dont think removing the tonsils and adenoids will help at all then?it is hereditary as my dad and nephew both have it too,my nephew scares the life out of me,like your son im always waiting to see if hes going to take another breath too,he is very overweight and we do worry that when he starts going to the pub,drinking may cause him problems

[phasmid]

Hi Carole, it's a shame your son couldn't get on with the mask. I have been using one for over ten years now and it really makes a huge difference. The only problem I have is when I have a cold - as it blows air down your nose I am sure you can figure it out.

[lindy-lou]

Hi Lindy, I suffer from this condition myself. I know that removing tonsils may well help. I hope they get this sorted out quickly for you.

 

 

thanks phas,i remember you saying you had to use cpap for apnoeas <'> i hope removing the tonsils will help because i feel in a no win situation now,wont get any help to sleep and feel worse knowing its these that wake her in the first place,it doesnt seem to make her tired during the day though,i was gobsmacked she has them to be honest because ive never noticed as she is in her own room,quite freaky to see all her vital signs drop so low during an episode.

[phasmid]

Lindy, how old is India?

[lindy-lou]

she is 3 and a half

[oracle]

Lindy-lou Rob's sleep problems only began a coule of years ago so I don't think his has anything to do with his tonsils but that does not mean that your daughters does not. However Rob does have an on-going problem with his vocal cords and they think that maybe his problems are down to that.

 

Phasmid - do you use the machine?

 

Ooops just read your mail. Rob could not stand the cold air of the noise and like Lindy's daughter it does nota appear to bother him during the day. As a DJ he often works in smokey places and I just wish that he would quit!

 

Carole

Edited February 1, 2006 by carole

[phasmid]

Every night Carole.

 

Lindy at three and a half removing toher tonsils might make a lot of difference to her, mine were taken out years ago so that wasn't an option,niether was laser scarring of the throat (it tightens up the airway) so I got a Cpap machine instead.

[Paula]

My son was born with bi lateral choanal atresia.(No air way through the nasel passage)

 

He cant close his outh at all or blow his nose,eating is a nightmare and he snores for england.Accompanied by periods of not breathing and loud gasping.

 

Hes just recently been back to the LGI for a ct scan and will have to have yet more operations to try to correct the atresia.

 

The operations are a nightmare and very painfull and the scar tissue is constantly reforming and blocking the nasel air way againe.

 

Combine this with the As and its a bloomeing nightmare.

 

I dont want to belittle in anway tonsils and adanoids being taken out because all operationsall conditions however small are horrid especially when its youre child but i wish to god all my son had was an tonsil problem.

 

Im dreading it hes dreading it.Every night i check hes breathing every single night i wonder if hell die in his sleep

 

Ill be glad when its over.This will be the 20 operation to try to correct this problem.

 

 

,

[lindy-lou]

Every night Carole.

 

Lindy at three and a half removing toher tonsils might make a lot of difference to her, mine were taken out years ago so that wasn't an option,niether was laser scarring of the throat (it tightens up the airway) so I got a Cpap machine instead.

 

ive had mine removed too,when i was 18,not pleasant at all,i dread the thought of them doing it because she is needle phobic and hates being anywhere but home,she screamed the place down to go home even though i had prepared her for it all day,she even kept saying i wanna go home in her sleep bless her i think even though she has huge tonsils(the doc was fair impressed with the size of em)i ts the adenoids that will help more as she sounds so nasal and bunged up even when she isnt.

[lindy-lou]

paula that sounds awful <'> do you have an alarm incase he does stop breathing?

[phasmid]

Paula, there are times I curse and swear about my mask and the times my machine makes a stupid noise just as I am dropping off and wakes me up...I shan't moan anymore. I think I have it easy in comparison. I hope they get him sorted as quickly as they can for both your sakes.

[BusyLizzie100]

Don't know if it's any help, but my NT son had his (huge) tonsils out when he was two and a half - they were so huge they were touching and there was concern over his sleep apnoea, too. Adenoids came out as well. In fact when he was about 8 months he had to be rushed to hospital with a breathing problem - the docs never really figured out what it was - no evidence of chest infection etc but they gave him antibiotics anyway and he got better quickly. I reckon he probably had a throat infection but at that age it just closed up his windpipe.

 

Anyway, the good news is that the surgery had an instant impact and he's much improved in many ways and now 3 and a quarter. My eldest (AS) son has also had his out, and my middle (ASD) son, aged six, is due an operation imminently. His is the one I feel most nervous about, apart from the fact he has a hole in his heart as well.

 

Still, it did the others so much good that I think it's the best thing for him. He's just missed two days of school this week with a bad throat and it just throws him totally - particularly going back to school and trying to work out what's going on because the rest of his class has moved on.

[Paula]

He had an alarm when he was born and they inserted what is known as stents into the nostrels.

These had to be suctioned out every hour at least 24 houres a day to enable him to breath.He couldnt feed very well either.It was a liveing hell.

 

Choanal atresia is also part of a syndrome known as charge and so he had to have loads of scans to check his other major organs weren abnormal.Thank god they werent.

 

He underwent operation after operation in an attempt to correct the defect.The final one or so we thought was the final one involved removeing his soft pallet and going in via that way it was called transpalletel repaire.He was in so such paine.I just wept.

 

All this and id a two year old daughter to deal with as well.

 

I ended up realy ill the stress made the bi polar idsorder i have kick in in force and id a breakdown.

 

 

In the end the drs said there was nothing more they could do for him untill he got older hence were back at the hospital.

 

 

Its stupid stuff like he cant blow his nose,cant brush his teeth without becomeing distressed(try it without being able to breath through youre nose) cant eat properly.Hes a constant dry mouth due to mouth breathing his nose is always dischargeing geen muck due to the fact it cant draine in the normal way and he gets constant ear infections.

 

 

Id never wish it upon anyone choanal atresia ever it sounds so trivial but its a horrid condition.

 

Im hopeing techniques will have improved and new drugs might stop scar tissue reforming.

 

I often think why us why our boy.But then why not us its got to be someone.

 

For us the atresia has been worse than the AS.The AS is our sons side line !!!!!! Ive whinged on im sorry just needed to get it out.

 

 

All my thoughts are with anyone whoes child needs to go into hospital you put yourself in there place you feel there suffering.Its awfull being a mum at times.

 

I darent start to cry else im scared ill never stop.

Edited February 2, 2006 by Paula

[lindy-lou]

oh it does sound awful paula <'> hopefully they will be able to help him more now he is a bit older,your kids being in pain and distressed is awful,its bound to affect you when its gone on for so long,you must feel you cant relax which must be difficult.ive never heard of the condition before,sleep apnoea seems pretty insignificant compared to you troubles <'>

[Paula]

Its a very rare condition lots of babies die at birth if they have it because there born not breathing and by the time its discovered they have atresia its too late.

 

 

Luckily and very rareley our son was born breathing via his mouth very very unusual but making terrible noises.the midwife aint a clue what was wrong.It took 3 houres to get a peadiatrician to realise what it was and then hed to look it up in a book.He then spent a week in special care in oxygen and being fed via his stomach before being transfered to Leeds where they know what to do.He didnt come home until he was almost 3 months old.As wed to learn how to care for him.The equipment wed to have.

 

It was like being in a freak show.because it was so rare the drs and other folks used to request that they could come to our house to see what was wrong and how we looked after him.Because they might not see another case in there career.Just added to the stress.

 

Hes also undergone loads of test to see if there was any chromasone problems in case it was an inherited condition but it isnt.Its just one of those rare rare things that strike out of no where.

 

 

We are lucky though.I saw kids in the LGI with cancers and terminal illness kids who one minute were there and the next dead.

 

When i read other peoples posts on here i realise how mild in comparison to others our sons AS is.And how bloomeing lucky we are that he attends a speical school.

 

He enjoys life hes happy he can walk talk and run not all are so lucky.

 

Every could however black has a silver lineing.

[UltraMum]

Paula <'> <'> <'>

[lindy-lou]

Just to update you on this,we saw the consultant last week and India is having her tonsills and adenoids removed shortly,as you can imagine i am dreading it we have to go to a hospital 50 miles away,and she hates hospitals at the best of times,let alone an unfamiliar one,not looking forward to her having to undergo a general anaesthetic either but still it is for the best as her hearing has become very poor as has her dribbling and nasal breathing,will let you know how it goes

[Paula]

Lindy

 

Good luck with it all.

 

From a mum whoes walked the hospital corridoors loads of times and knows what its like.Take care itll be over soon.

 

 

<'> <'>

[Brook]

lindy-lou,

 

I know how you are feeling. <'> <'>

 

All the best for the op, you'll soon be on here telling us how it went.

 

Have been there too, so I know you need lots of these right now. <'> <'>

 

Brook

[phasmid]

Fingers will be well and truly crossed for you al that this will cure it for her. Can you remind us nearer the time?

[lindy-lou]

I WILL LET YOU ALL KNOW WHEN WE HAVE AN APPOINTMENT,THANKS FOR YOUR GOOD WISHES

[lindy-lou]

*Update* India will be having surgery on 21st June.plese keep her in your prayers,im so scared

[aro]

Will be thinking of you and India on the 21st, hope it goes well, <'>

Anna x

[phasmid]

We'll be thinking of you all here here too.

Edited June 11, 2006 by phasmid

[lindy-lou]

thanks x

[kirstie]

Lindy-lou, i'll be thinking of you both too!

My wee boy (9 months) has something called Laryngomalasia (sp??) which is floppy larynx basically. He has had terrible problems breathing and has been admitted a few times to be tube fed and have suction. He's a little better now he's older but he does have this Apnoea too. I listen when i'm in bed at night and it seems to take ages for him to take another breath sometimes. He also makes a grunting sound as if he's got a fight almost and it's made him take that breath. I wake up with a start most night and give him a little prod to make sure he's ok. It terrifys me and i'll be mentioning it the next time we see the Paed. He has a ganglion on his hand and they really want to whip it uot under general but i'm really not into it atall, he's only a wee baba!!

I hope all goes well for India (and you too Paula!)

[Amelia]

Will be thinking of you and your daughter on the 21st. Hope she is ok.

 

My son is on the waiting list for his tonsils to be removed as they are large and meet in the middle. He had his adenoids out a year ago as xrays showed he had no airway down his nose. They said they are not allowed to do tonsils until age 4. He has sleep apnoea too.

 

Regards

[lindy-lou]

That must be your health authoritys policy?India isnt 4 til august and my friends 2 year old has just had his tonsils removed,if they have apnoea it is the first line of treatment they use is to remove them,India has never had tonsillitis ever but her tonsils are so large they restrict her breathing terribly and make her choke on food,her health is not good and its thought to be down to the tonsils,hopefully her immune system will kick in a bit once she has them out,also the y have huge red veins running down them,they are not nice at all,she speaks very nasally too due to the enlarged adenoids,thankyou for your kind thoughts,i will let you know how she gets on x

[LittleRae]

Hi Lindy-Lou

 

It's worrying when any kid has to have anaesthetic, but it's likely she will hardly notice it. My DD had tonsils and adenoids out when she was 2. She was a little upset for half an hour after the op - but mostly because they wouldn't give her chicken nuggets and chips! It's more difficult when you're older - the 18 year old in the next room needed a week in hospital to recover, while my DD went home next day.

 

<'>

A

[lil_me]

Hope everything goes well, will be thinking of you both and I hope it helps with the problems she is having

[dooday24]

hi hope all goes well my sonhad sleep apnoea fom when he was born but they just put it down to me being a over potective mother until he stopped breathing all together luckily we brought him around so had his adonoids removed when he was 6 months old and then at 14 months too now hes fine good luck

[lindy-lou]

Please pray for my darling girl tomorrow

[Brook]

Lots of these for little India <'> <'>

 

and some for mum <'> <'> <'>

 

Brook <'> <'>

[lindy-lou]

Just to let you know India had her surgery yesterday and we are home now,she is sore and miserable and doesnt sound the same!!but all went well and hopefully she will continue to improve x

[Suze]

<'> <'> get well soon India.............brave girl

[marshmallow]

<'> <'> Hope you feel better soon India. Thinking of you too Lindy-lou, my ds was up and around very quickly after having his tonsils and adenoids out, so much so he was sent home the same day because he wasn't going to get the rest he needed on the ward with all that space and beds to jump on, nor was anyone else!

[BusyLizzie100]

Well done to you both for getting through it. Hope India is not too sore! We were advised to keep up pain relief for a fortnight after the op - paracetamol and ibuprofen - to stop the pain getting too much so they stop eating, cos that's when infection can take hold.

 

My DS2 had his tonsils out in April because of tonsilitis - apart from screaming the place down when he came out of the anaesthetic he recovered very well. DS3 had his tonsils out when he was 3 because they were huge and he had some sleep apnoea - the surgeon said he found they were full of polyps (sp?) and puss! They just looked huge from the front. Since he's had them out, no sleep apnoea, no breathing probs, even that funny catchy cough in his throat when he exerts himself is gone. He got over it really quick, too.

 

Good luck to you all, and the worst really is over (that awful moment when they go under the anaesthetic!) and getting better is what happens next. I do hope little India is feeling better soon - and you, too.

 

All the best

Lizzie