Sleep apnea........any experiences?

[pucca]

My ds has a hearing loss of 40-50Db due to glue ear. He has an hearing aid on his left ear (will prob be given one for the other side at next app). He also has a bifid uvula.

We finally got an appointment with ENT yesterday and they had some concerns that he may have sleep apnea, so they want to do a sleep study on him.

His sleep is awful, he has night terrors, and constantly wakes himself up by either moving around and changing position or gasping. His breathing pattern goes from very heavy ( light snoring) to hardly there (very shallow breathing), he also has pauses in his breathing. He kicks out and screams in his sleep.

He also mouth breathes - daytime and when asleep. He had episodes of lips going blue when he was a baby (has happened occasionally since) and it was always when i was changing him, him led flat on changing mat. He saw someone at hospital but all they did was listen to his chest.

His behaviour is pretty terrible too, he is very grumpy when i get him from pre-school, and can be hyper and aggressive.

His development....he has missed his early learning goals, his speech is terrible and is seeing a SALT (they reported that he has low muscle tone in his mouth).

~I was just wondering if anyone has any experience of any of this? as it is driving me potty.

I have posted previously about my ds.

I know ther are afewadults / spouses on tha main board experiencing sleepapnoea so wold it be worth posting there as well? SN posts only visible tothose who have askedtoseethem.

Aaah ok thanks for that Bethmoirenewnameforpeachy i have posted it on childrens health too.

Riven...Yes i think that is what they are thinking, in which case i guess they would remove adenoids and tonsils, there is maybe a chance of him having a submucous cleft though so i am not sure what they would do about that.

My dd is having stats machine overnight tonight we mentioned to our community nursing team how concerned we are over how much she starts herself awake at nighttime,her breathing goes so shallow at times we worry she has stopped breathing, we know she has destated whilst on stats machine in hospital after her peg was f itted recently and we have been worried since whether she is destating regulary.

Our community nursing team spoke to our paed who asked them to bring round stat machine so he can have results for our appointment with him on tuesday x

Hi pucca, how old is your DS? I only ask as DS2 had his submucus cleft repaired last year (he's 6 now) and it has helped to improve his speech somewhat.

J also heavily de-sats at night and before his diagnosis (he has a chromosome abnormality) they removed his tonsills and adenoids. The adenoids were a big error as they just made the gap in his palate larger enabling more air to escape through his nose when speaking.

He has just had a PH study done to see if gastric reflux is the reason for his SATS plummeting and we should get the results next week. This can be quite common apparently if they have hypotonia, but quite straightforward (in comparison to other sleep disorders!) to correct.

J's SATS have improved very slightly overnight since having his palate repaired incedentally.

HTH.

hi dd does have some sort of apnoea she stops breathing, but she can be awake too once even when sat up playing i just watched her go blue, we too waiting for sleep test and waiting to have her adonodes and tonsils out hers are huge dd as had blue episodes since birth

My son has sleep apnea too. It was discussed for him to have his adenoids and tonsils out but they don't like to give him ga often due to his heart condition. As he and we cope with this it's not as major as some of his other issues. He too startles himself and jerks back, breathes shallow, snores etc. The best position to sleep in is on the knees face down...this helps with his breathing but he also has lung probs. He too has behavioural issues etc but this is all down to his conditions. HTH x

Ds is 3.6yo, thanks so much to everyone who has replied, does anyone know about this machine they use to test? ds moves alot in his sleep, will i need to stay awake in order to make sure it stays on him?

Janmum - how did you get on last night? that is good that the results come through so quickly.

Hi Pucca, My GS and my daughters both have sleep apnea although none are on a stats machine at night YET!!!. My GS has sleep study every 6 months, he as moves some thing rottten during the night. The lkeads on the machines are long enough to cater for this so no you wont have to stay awake but doubt you will get much sleep to be honest they are checking the machines every 20 min through the night.
I am concerned that you have been told about the low facial muscles and late milestones they sound like my GS and as mentioned on a previous thread he has Myotonic Dystrohy it is the second most common Musclular disorder but is often missed or miss diagnosed, please get this checked it only needs a genetic blood test. Also you can check on the Myotonic Dystrophy Support Group website although dont be allarmed as each individual is unique and the severity of each case is different. There are 7 people in my H's family with and all are different but the same if you get my meaning.

Oddjob3...I have googled Myotonic Dystrophy, but couldn't really find out that much about childre. What are the symptoms? and is a blood test done by the G.P?what happened with your GS? there is no family background in my family of anything, the only thing is my nephew (brothers son) has dyspraxia and is on the autistic spectrum.

Ds did have some blood tests done by the paed as he eats very strange things they came back ok, prob to do with the low muscle tone....he still does this now.

He also dribbles alot still, and mouths everything, also chew his clothes, things like that. There does seem to be something going on with his mouth, he loves rubbing his electric toothbrush on his face.

We got on ok the monitor went off 3 times once at 3.45am but had stopped by time i got in dd was fast asleep in same position she had been in all night but i did notice her arm was jerking a bit but settled down, then it went off at 5.45am again for matter of seconds and she was still flat out same position then again at 6.00am again same position flat out asleep then she woke at 7am.

Told nurse about her arm jerking but she didnt seem to interested to be honest and when i said about the times monitor went off she just said lots of ppl naturally de-sat when asleep so she prob just done that and re-sat herself which is good..

So wait to see paed now on tuesday x

Pucca NO the blood test will need to be done by a genetitist (dony know if that is right) . Have a look at the thread regarding Low muscle tone - some of the symptoms are listed on there, but generally - Learning difficultlies (but not allways), low muscle tone, dribbling, problems walking such as falling, late milestones, difficulty with grip, lack of facial expression,lack of initiative, . difficult to understand due to poor facial muscles.
I am always on the look out for the condiditon in others as it is so often misdiagnosed which worries me.
My GS was Congenital so his condition is worse than his mothers , he could not even breath for him self at birth or feed we had to open the holes on his bottle tteat so the milk virtually poured down his throat, He could not sit or even hold his own head up at 11 mths, but now is a happy little boy, yes he is behind but is a lovable little imp.
dont wish to put the frighteners on any one but just wish the medical proffesion was more up on this condition.
hope I have given you enough information.

His gross motor skills are good, if anything he is hyper although clumsy (always jumping on furniture etc) he can't pucker though (i know that sounds silly) and of course his speech is terrible. His eating is fine too.

He was a bit late with crawling/walking/jumping but not late enough for concern iykwim.

Thanks for coming back to the thread. will go and have a look for yours now.

Janmum...Glad your night went ok, def let me know how you get on.

Oddjob...have just found a good article here....

link

My ds has issues with his bowels, he is dry in the day and really good with weeing in the potty/toilet but his bowels? he is terrible, he doesn't seem to be able to do a full/formed poo (tmi i know sorry) he does it in bits, up to 10/15 times a day he will soil his pants.

I also had excessive fluid when pg with him, and when he was born his blood sugar and oxygen levels were low.

Yet his grip and everything is fine, he was delayed in jumping though.

He also had to be taken off me to be suctioned and was grunting when he was born, it was touch and go as to if they needed to take him to neo-natal.

Thank you for that Pucca - it certainly describes my GS down to a tee.

Hi pucca nothing useful to say just wanted to say I'm so pleased to hear you got the ent referral for your ds and they are finally doing something!

Thanks bc

I just feel like every appointment brings more problems at the moment though.