Babies with sleep apnoea

[mumof2lads]

Hello!
Anyone with a baby on oxygen for sleep apnoea? I thought I'd put it out there to see if we could support each other.

According to the doctors there are lots of bubs with apnoea out there but I feel quite isolated with not knowing anyone else going through the same trials!

:flowerz:

[Nowhere]

hey

my dd has sleep apnea as wel she sleeps on a cylormetrics heart and lung moniter, she isnt on oxy now YIPEEE YIPEEE she has had 2 operations to corect her airway issues what was part of the cause for her apena also had a fundo to stop vomiting didnt work so stil dealing woth obstructive apnea from that and she is on epilin as wel due to the fact the cause for ehr central sleep apnea is epilepsy

How old is your bub, been on oygen for long, is he getting any better, how often he having episodes is he doing wel on 02, high or low flow etc

sorry i ask lots of questions lol

[mumof2lads]

Wow! Hooray, someone who knows how hard it is! My little boy is now 10 months and has been on oxygen since 6 days when his apnoeas were first detected. We went to the hospital thinking he had a bacterial infection and he decided to stop breathing and go blue! It was very, very scary. It turned out that he had a virus and the paediatrician thought the apnoea was due to that and told us he should only be on O2 for 6 weeks. Well, many oximetries later he is still having lots of apnoeas. We just had an oximetry a week and a half ago and as soon as they turned the machine on, even before they turned the O2 off he had a drop. I couldn't believe it. This oximetry seemed to be the worst one we have had. But good news, the paediatrician said he could be O2 free when he is awake now which is so good! We can actually go out into the garden and not worry about the tubing anymore! Ciaran is on a really small amount of O2, 0.06 but it's enough to keep him safe. We are waiting for an appointment to have a full sleep study done now to investigate the cause. My older boy has just had his tonsils and adenoids out because of obstructive sleep apnoea so it will be interesting to see what the cause of Cia's apnoea is.

Thanks for responding, it's so great to be able to talk to someone who understands!
:)

[LivinOnAPrayer]

Hi!!

My little miss Alex is having her tonsils and adnoids out in march. She's 18 months and has had apnea since about 3 weeks old (probably before but ??). We only have a snesor mat but she seems to be alright. Most times she self resolves. We dont get much care out here (in the bush, central qld) so i really dont know how bad her spnea is, enough to make her a tired, grumpy bum alot of the time though.

Its so sad that your little man needs help at night, its scary!! I hope the drs find the cause asap. But its so great to hear he's alright off o2 in day time!! :yelclap:

[suemp]

my son has "moderate" apnea due to obstructive reasons. he was bron with a floppy airway and larynx. he isnt on ox nor have i noticed him stop breathing (dp has) but he is a terrible sleeper and wakes alot and its part of the "disability" he was born with.
we got the apnea diagnosed at the mater childrens hospital qld. they have a fantastic respitory sleep clinic there and we are back there next week for a check up

[LivinOnAPrayer]

Hi guys. Id really love to keep this thread going, as i have a few q's.

Alex's breathing is getting louder. Even when she's awake and just normal, her breathing is pretty loud now. Do you think that means her tonsils/adnoids are growing bigger??

[suemp]

peta: has the noise been for afew days or like weeks? the reason i ask is kanes laryngotracheomalacia has good days and bad days. he can be noisy for a few days more than normal than go back to being quieter
my ds1 jake had extra large tonsils and adnoids to the point the tonsils almost touched each other. he never made any moise other than occaisionally snoring but he had to keep his mouth open to help him breathe

[LivinOnAPrayer]

Hi sue, i think its been getting louder over the last few weeks. Alex keeps her mouth open all the time too lol. Or she snores and chokes. Shes such a loud kid lol!!

I dont think its her laringo making the noise, thats a scary thought anyway, dont wanna go there!! lol. I guess if not before, we'll find out why in march :fingerscrossed:

[mumof2lads]

Hi Peta!
My older son who had the obstructive apnoea. Constantly breathed through his mouth with his tongue hanging out and made snoring noises when he was awake but concentrating. He was hospitalised once because his tonsils were so large they were touching and he stopped breathing. If you are concerned please see an E.N.T and they can see what's going on. My son had his tonsils out last week and he now breathes with his mouth closed and I've never heard him sleep so quietly. I am amazed!
Good luck!
:)

[mumof2lads]

Sleep study for little one next Tuesday! Yay!!!!! Finally find out what's going on!
:):):)

[LivinOnAPrayer]

hi! Thats great!! How did his recovery from the op go? Alex breaths with her tounge sticking out too lol. I am a bit worried, but our ent are 900k away so im happy enough to wait, i dont think its urgent, just progressivly getting worse i guess. Hope the op isnt post poned!!

Good luck with the little mites sleep study next week, where are you having it done?

[threeofthem]

Hi im new to this but it is good to know that im not the only one. My 11 mth old son has always been a bad sleeper, wakes several times a night has stopped breathing on several occasions, but only once when his reflexes didnt kick in. It's always worse when he is sick or has a runny nose. I have had to fight with doctors to get to the bottom of his problems and have finally gotten a referal for a sleep study in march. I hope I can get some answers:hair:

[LivinOnAPrayer]

elizar, hi!!
Its really bad that you've got to wait for a sleep study for your little man. Its stories like yours that make me grateful for the help we do get.

My DD Alex also self resolves 9 times out of 10. But its that 1 time that can make the differance. Do you have a monitor?

We're off to the hospital tomorow for who knows how long, but ent will be invloved and there will be a push to get Alex's surgery (tonsils and adnoids out) earlier than scheduled (march). :fingerscrossed:, its be great for her to sleep easy.

[threeofthem]

Hi lexi11
We don't have a moniter as im a light sleeper and when he is sick i put him in the porta cot in our room.
I hope that your bub gets an earlier operation so that you can sleep easier and that all goes well at the hospital. Take care

[mumof2lads]

Hi Girls!
Firstly Peta, I hope all goes well with Alex's hospital visit! Please let us know how it goes. Shannon has now recovered from his surgery, thank goodness. The week after the surgery wasn't pleasant but hopefully long-term he will be better off. He seems to be sleeping a lot easier which is great (and still so quiet I can't believe it!).

Elizar, Sorry you are having such a struggle to get to the bottom of things. Keep pushing. If you feel something is not right, as it clearly isn't, there is good cause to do a sleep study!

My little one had his sleep study in Adelaide last night, he also had a Ph probe inserted to detect any reflux (that wasn't pleasant). In the sleep study he was wired up pretty extensively but it didn't bother him and he was still able to sleep amazingly! Unfortunately he is still having apnoeas and needed to be put back on oxygen but when the results come in we'll know exactly what's going on!

[LivinOnAPrayer]

Hi guys. Well we just got back from hospy. Alex's tonsild and adnoids were ment to come out yesterday in Rockhampton hospy but the aneithasist cancelled. He thinks alex will be too critical post-op for rocky hospy to handle, so again, we have to wait for brisbane. Tests also showed that alex has fluid in her middle ears so that means she'll need grommits too. Fun and games. How are all the little people today?

[threeofthem]

Hi just an update on how Elijah is going. He was seen by the sleep dr on monday and we were told that yes he has a problem (YAY someone listened to me) and it will probably be resolved with taking adnoids out. He will have a sleep study test done in the next few weeks which should tell us more. Hopefully we are on the way to getting the bub well and happy.

[LivinOnAPrayer]

Hi ladies.

elizar, im glad you've found Elijah a good dr. Someone to listen to you.

Alex and i went to brissy last week for appoints with all her specialists.
We saw her ent, the one that did her 1st surgery for laringomalacia. So anyway, he asked me a few questions, took a look at her chart, then called admissions and told them shes a catagory 1. So she's having tonsils, and adnoids out, grommits put in and a scope to check out the doc's handy work from last time. lol, he's a bit of a child. But a great dr. We were lucky to see him, cause he's the best at RCH.

So in a few weeks we should get a letter with 3 weeks notice of the op date. Im not sure which i feel most, fear or excitement.
This op should help alex's breathing, feeding, speech and balance. YAY! :smiliedance:

How are all our apnea kids?

[threeofthem]

Hi lexi
that is great that Alex is having her op soon, i hope that it is a success and that it all goes well.
Elijah is booked in for a sleep study on the 25th of march, which is great i'm really glad that it is happening. However I have a huge fear that he will sleep soundly and will have no apnea episodes, the dr doesn't think this will happen as his chest is concave indicating that he stops breathing lots in the night but i still worry. I think it is only because i am sure that things will be better for him if he has an op and it will only go ahead with the evidence that there is a problem (I don't think that having tonsilitis 4 times in the last 6 months enough)
These poor kids with sleep problems (or any) it must be really crappy for them and their parents. My heart goes out to you all

[threeofthem]

Elijah had his sleep study on tuesday night, my fears about him sleeping through the night with no episodes was unfounded as he slept so badly, stopped breathing every half hour untill 11 when he woke up fullyand then cried for the next 2 hours before getting back to sleep. Im glad that i don't sleep in the same room as him because then I would never sleep.
Hopefully when we get back to the dr's he will say there was enough info to get some help.
Hope all the other sleep babies are doing ok
Julie

[LivinOnAPrayer]

:hugs: Julie. I've had the same fears!! lol
Im glad the drs saw what you and Elijah are going through. I really hope he gets the help he deserves.

Alex's op is in 6 days, im so nervous for her. We've got alot riding on this op.

[threeofthem]

:hugs: All the best for Alex's op, I am thinking of you both and pray that all goes well

[LivinOnAPrayer]

Hi guys! Alex had her op (tonsils and adnoids out, grommits in, laryngoscopy, bronchoscopy) 2 weeks ago today and is now doing SOOOOO well! She's eating like a horse, sleeping so well (she doesnt even move now!!) and just looks so much healthier. :yelclap:

[threeofthem]

Lexi that is great that Alex is doing so well after the op. Elijah also has to have adnoids and tonsils out. Hopfully it will happen in the next couple of months. I hope he has the same positive results as Alex.
yay for you both :smiliedance:

[sunshine005]

Hey all, My lil girl has just been diagnose wit sleep apnia and needs oxygen given to her through nose prongs :( We have just got home in Tasmania from doin a sleep study at monash in Melbourne, She is 5 months old and it is so scary, having to listen to weather i can hear her breathin as she is a heavy breather. She has pauses in her sleep but they drop straight down and jump straight back up instead of slowly workin its way down and up. Left wit out oxygen i've been told it can effect her brain as it wont b gettin the oxygen it requires. So at the moment things are pretty scary and i have been doin the whole 'why?' thing, and is it my fault? She has an app thursday wit TNE specilist to b booked in to b put under to see if adnoids and tonsils need taking out, will keep u upto date

[LivinOnAPrayer]

im sorry to hear your dd isnt doing too well sunshine. :hugs: Its hard, but its not your fault!! Seriously, o2 is better than the alternative....and hopefully she wont need it for too long.

My dd is 21 months old and last month had t's + a's out, as well as grommits in and a few scopes at the same time. The ent's these days are so brilliant!!

Please let us know how the little mites appointment goes. Poor bub :hugs:

[mummytoashton]

I really hope this message gets to where Im intending. My 6 month old son has Obstructive Sleep Apnoea and has been diagnosed and on CPAP since he was 7 weeks old. They say he also has Laryngomalacea which they are guessing is causing the OSA. I picked his problem up much earlier but took a while to convince doctor's there was a problem and for them to investigate. It wasn't until I taped him on my mobile and showed it to the doctor that it was really taken seriously!
It is so worrying. He has had 2 very long apnoeic moments....one where I even gave him a breath as he was really struggling. The specialist are saying they cant explain it but I am really wondering if he wouldn't benefit from having his tonsils and adenoids out. Not that I want him to have unnecessary surgery but I hate seeing him this uncomfortable/unsettled.
We are very house bound with his CPAP as it requires electricity to work and as he is so young still, he sleeps quite a bit.
I would really appreciate a bit of support from people who really understand what we are going through and some information!! x

[LivinOnAPrayer]

:hugs:!! That must be soooo scary!!!!! My DD Alex is 22 months old now, and was diagnosed with laryngotracheamalacia at 2 weeks of age. She was on vent and cpap for a week before the ent surgeons did lazer surgery to correct it.

Alex has always had apnea, but it got worse at about 12 months and her tonsils and adnoids were removed in April this yr. Since then she's had no apneas!!!

Im wondering though, if your little mans laryngomalacia is bad enough to be on cpap, why havent they already operated???? Is he on cpap 24/7? Sometimes apnea can just be the airways (his laryngo) and taking tonsils and adnoids would do nothing if they arent overly large. But he certainatly cant stay on cpap for ever!!! :confused:

[mummytoashton]

Hey! Thanks for getting back to me! He is on CPAP with every sleep which is usually from about 6pm-6am and then 2-3 day sleeps, so it doesn't really leave much time to get out in between. He needs it for every sleep. You can really tell CPAP's only been invented for 20 years.....hopefully someone is working on a portable version!! :-)
There was talk about doing a possible 'laser' procedure but nothing else was ever mentioned about it. What is it etc?
We have another review in August, then our 3rd sleep study in October...fingers crossed we'll get great news in November....NO MORE CPAP!!!!
Does your daughter still have sleep apnoea?

[mumof2lads]

Hi everyone!
Just thought I'd leave a post to touch base as I haven't been able to for a while. I feel for all of you guys whose bubs have some problems. My bub is now 15 months old and is still on O2 for all sleeps. We have another sleep study coming up at 18 months old but this time I'm not getting my hopes up. I'm used to the O2 now and can't imagine him not having it! When I look at him with his nasal specs on I don't even see them. Sometimes I wonder why people at the shops are staring, then I remember! At least I can sleep knowing that if he drops (which he does) his brain will be protected. :)

[naiwen]

Hi all,

Edward is on O2 overnight for his chronic lung disease, not quite the same scenario but I can sympathise.

Julie I am also called Julie lol, I am very used to his plastic mustache also!

mummy to ashton, Edward has been on CPAP heaps in hospy but never at home, I can really sympathise with not getting much time of it. Do you have issues with his nose being sore? Is he on bubble or regular CPAP?
Edward has been on both, bubble the 1st time and then normal the rest lol

Hope all are good

[LivinOnAPrayer]

Hi guys!!! I think im going to retire from this thread now. :smiliedance: Alex has had just one apnea since coming out of hospital after her operation in March. She is doing so so well with her breathing.

:hugs:'s to all you mummys, i know just how scary and frustrating it can be :hugs: Good luck!! :flowerz:

[mumof2lads]

That's fantastic news for you and your little one. I wish you guys all the best for the future!!!
:flowerz: :):):) :flowerz:

[mummytoashton]

:flowerz:Hi all!

We've had a bad run the last week and a half. I was in hospital with Ashton as he has had a bad cold that has been going around. HE developed a terrible wheeze and sounded very chesty. Our specialist wanted us in hospital just to monitor him as they were thinking they may need to increase his cpap pressure. LUCKILY there was no need to do so....:smiliedance:He has a viral thing and should be right in the next week. He's still not 100% but is slowly improving. It's like he grew up all of a sudden in hospital. He now sits up all by himself and is rolling all over his cot now. Can't believe how big he's getting.
His is on normal cpap as far as I know....what's bubble cpap? I'm a nurse and have never heard of that. We've got an ENT appointment in 2 weeks so we'll see how that goes.
Thanks so much for having these little chats. I really look forward to reading how you are all going. I think it really helps knowing other people are going through similar things. I think it's keeping me sane being able to 'unload' on people who understand!!:ecomcity::hugs:
Well, i hope you and your little bubbas are well. I'll be in touch again next week!
Love, Natalie
x

I can relate to you all with not noticing their o2 prongs. Ashton's cpap covers most of his beautiful little face but we dont even notice it - it has just become so normal. Even our little 3 year old isn't fazed by it - i think with all of this 'medical' start to Ashton's life he's already a doctor in training hahahaha

[mumof2lads]

I agree about the 3 yr old sibling thing. My older boy has gone through stages of tripping over the oxygen cord, pulling the specs off his brother's face and lately tugging the cord behind his little brother's head as he crawls along pretending he is a puppy on a lead!!!!
You have to laugh don't you?! :laughing: