My 2 year old daughter has had abdominal pain and restless sleep with numerous awakenings for over six months.  After lots of tests and surgery for her abdominal pain without any improvement, I finally convinced the doctor to do a sleep study.  She was diagnosed with central apnea.  We just got the report and see an ENT this week.  That day they put her on .25 liters of oxygen at night.  Also, my husband has pretty severe OSA.

I did want to display the results so you could help me decifer the data.  She was asleep for 9 hours and had 12 awakenings.  The baseline O2 sat was 95%, was below 90% for .4% of sleep time, with a sat nadir of 82%.  The ETCO2 was 43.  Her API was .4.  Her cental apnea index was 3.7 events per hour and had at least a 4% O2 desat.  They also take video and the video clips showed no limb movement disorder and mild snoring.  

How do these numbers compare?  Does it seem pretty clear that it is central apnea or could it be OSA?  Her tonsils and adenoids are large but her AHI was so low and they didn't see any obstructive breathing patterns.  I am so concerned with her being on oxygen.  Also, does this in any way explain her abdominal pain?

Thanks so much for your help!!!
Veggiekim

my son has central sleep apnoea but we have been told there is no treatment for him, they have considered oxygen and caffine but dont feel it will help matthew,

not sure what AHI is. i think the co2 is ok i think anything above 50 is a concern well it is here in the uk

my son has had 4 sleep studies in a year, thw 1st showed 285 central apnoeas, peridodic breathing, lowest 02 drop to 82% im not sure without checking if it was 32 or 48 dips in saturation an hour, one of those figures was from his 2nd study.

no advise re admoninal pain

can i ask u a question about that, i have a daughter who is 4 and has suggered pain in her left side for many many motnhs with no known reason for this. what side did ur daughter have pain on what surgery did they do?

good luck in trying to sort ur daughter ok

love nat

Hi,

I was in the same position as you, however my son was put onto oxygen at the age of 10 months. He was on 1litre whenever he slept (increased up to 3litres when he wasn't well) and stayed on it for almost 18 months. His consultant at the time thought that it would be a good idea to get him off the oxygen and since then his apnoea episodes have increased. We are now back to almost where we started, prior to his diagnosis. In a way I often wonder whether his apnoeas would have ceased if the oxygen had been continued!?

George is now 4, still attached to an apnoea monitor and so is his sister (2yrs). Both suffer with reflux, milk protein allergy, asthma and central apnoea. I shouldn't worry too much about the oxygen as she is on a very low flow rate. It will either help or not, and if not then I am sure they would stop it.

Not sure I can be of any help re. abdominal pain.

Hope that this is of help.

Andrea

Hi Andrea,

 I am just wondering what monitors do you use? Do you have ones that dont attach to the kids so they can get out of bed?

 With my 2 year old they are currently thinking that the reflux is causing the apnoea but I notice that a lot of kids have central apnoea and reflux as well so I am wondering if his apnoeas are central. Can I ask how your two they were diagnosed and did they think it was the reflux at first causing the apnoeas?

Hi,

Both children are on Graseby monitors which attach to their chests. The 4yr old can now disconnect his monitor so that he can get up in the night for the toilet and then plug himself back in. The 2yr old is still in a cot so she has no need to get out during the night.

When my son was on oxygen he was on the apnoea monitor, a sats monitor and also had the oxygen piping and we had a bed made into a cot for us, so that it was plenty big enough for him but kept him contained. He used this up until he was 3 1/2yrs.

Our son was diagnosed at Birmingham Childrens Hospital (UK) and underwent a whole multitude of tests, coming up with an immature brain stem and not that the reflux was causing the problem. Our daughter was diagnosed through our local hospital as we already had the history with George. She has not been on oxygen although I think it would help her as she does desaturate during the night and when she has apnoeas.

Hope this is of help.

Andrea

Thanks for your reply. Josh is going for a sleep study nxt wk so hopefully shuld have some answers then.
I asked my health visitor to get him a graseby monitor ( as his baby apnoea alarm is broken (tommy tippee) and very unreliable as he moves off the pad. and we hope he wont have to stay on his sats monitor. She is very helpful but said they cant supply grasebys for such an old child ( he is 2?) as the belt dosent fit their tummys so they only have stats monitors after they are about 1? Seems to be not correct judging by what you say about your two. Could you tell me how it fixes to their tummys or if there is any model number or something on the sensors that I can mention to them. Your help wpuld be really appreciated.

Cheers,

Erica

hi matthew is 2 1/2 and on a graseby. the wire is attched to the belly, i have a pict of matthew asleep with his on. no one has ever said to us hes to old., there is no other apnoea alarm available for older children and the graseby works fine for us

here is a piccie of matthew so u can see the probe is stuck on his abdomen
ask about the MR10 this isnt a belt its a wire this is the one matthew has

just thought i would add he does have a bed lol he just chose to sleep on the floor that night lol

aah!  arnt they sweet when they are asleep.  We had the study and the sleep study paed said all apnoea alarms are rubbish and the only one worth having was a sats one? I was really hoping to get him off the sats alarm as its taking the skinof the underside of his litle toe. Getting fed up with all the conflicting opinions from docs. He also said that reflux cant cause apnoea and that he had mild obstructive apnoea. During the study his sats only dropped to 87 though and they usually go down to 83 ( I dont think they sleep that deeply when wired up) he said his co2 was ok but what was weird was that this chest and abdomen move in opposite directions - have you ever heard of this?

So we lowered his omeprazol to 10mg a day and his sats dropped like mad and we had terrible nights over Christmas. have increased it again and he is gradually starting to get a bit 'better'

So we still dont really know which doc is right!

He also wouldnt say if its central apnea too as he said there si always a bit of this and he dosent classify apnoeas like that?

Bye the way I have been using a warm mist humidifier in his room and for some unexplained reason it makes his average sats a little better. may be worth a try it only cost £30 which isnt too bad .

hi ya
wow cant belive a paed said that if apnoea alarms r rubbish y do all Neo natal units relie on them and GOSH told us that the apnoea alarm is the only thing to relaly identify sleep apnoea

sats monitors r good yes we would love one but matthew dont warrant one from the community nurses and cant afford to buy one
matthew when hooked on a sats alarm doesnt seem to identify then properly. becuase matthew still has apnoeas without his 02 and HR dropping to low
when he was in GOSH last year he was hooked on a monitor with ECG pads and a resp counter plus sats monitor, it measures how mnay breathes per minute he was having and it was below 11 alot , one oint it dropped to 0 in a minute nad he wasnt blue, hes sats where normal but the nurse didnt want to wait for him to drop his sats so she done stimulation. so sats monitrors sometimes dont give the full stort esp if a child sats dont drop low enough

Matthew has been hooked to one in hosp and its been going off none stop at 87% but the nurses never seemed concerned he was doing this with a breathing rate of 12 a minute which is very low considering a normal resp count is between 20-40 breaths a minute.


again how can he say reflux cant cause apnoeas i know alot of children who have reflux related apnoeas so it can happen im sorry but he dont seem to know what hes on about.

not heard of the chest and abdomen moving in oppsite directions b4 so sorry cant comment

when r u nxt having a sleep study?
i would keep pushing fr more answers
and if hes sats r being affected by a decrease in his reflux meds i would say that it seems his apnoeas r reflux related

thanks for the advise about the humidfier need to invest in one coz of matthew asthma

hope i have made sense

Hiya,

 Sleep study isnt for 6 mths so no answers there. Why do the docs all contradict each other!!!!
I have asked them for the actual sleep study results so I can post them here and perhaps get some advice. J is having his videofluroscopy in  two weeks but I am wondering if this will help answer the reflux questions? Isnt it just the mouth area? Did it give any answers for Matthew at all? and most of all how the hell did you get him to eat/ drink the stuff and how much do we have to get down him?
Josh couldnt even have his stomach ultrasound the other week as he went so hysterical - he is terrified of doctors since 4 people tied him down ( wraped in towels!) to ensert the ph study probe down his nose!

hello there
lol i wish i knew the answer as to y they contradict themselves but its bloody annoying.
i think getting a copy of the sleep study is a great idea least if ur seeing it on paper u can try and undersatnd them abit better, we have had 4 and the 1st 2 menat nothing to me but now i understand them abit more but hate when they abbreviate everything lol.

well matthew had his VF done along with other tests to see if he aspirating which maybe was causing his seizures, at that time we never knew he had reflux til a couple of days later when he had the ph and got the results.

they found matthew had a abnormal swallow which is y they said he had probs with eating, they did say if it got worse he would need a NG but he has not had another since, when they got the results of the ph they put the abnormal swallow done to the reflux and said it should improve im hoping they will do another one

does J cough or has asthma like symptons or have probs eating?
i did think a VF is lloking at the swallow only.

they mix the barium which is a white powder in with some water and also some food they have to sit in a chair and that is it, not like the upper gi when they get moved around.

they then look at the barium thorugh a live xray and then can see how hes swallowing, if hes aspirating or hes bringing anything up.

good luck
do u msn messenger? if u want we can chat on there

Thanks for the reply.
Josh dosent cough generally but in his sleep he does a little cough/choke like food has come up and gone down the wrong way. Does matthew do this?

A dry ' one cough' type cough is due to asthma though so that might be what matthew is doing. I have it when my asthma is bad. Josh shows no asthma symptoms yet but I am always wondering if he will due to me having it.
  Josh is a NIGHTMARE to feed we have to have maximum distractions all the way through and it takes an hour each meal!  I have to feed him or he just wouldnt bother eating. Everyone used to say they will eat when they are hungry but he wouldnt eat at all.

I have noticed that he takes a deep breath in his sleep then his sats crash but I think its probably the other way around and then there is a lag on the sats machine displaying it so actually they crash ( breathing stops) and then he restarts by the big gasp. Dosent this sound more like central apnoea though?

I am praying the new baby is a gready monster that sleeps like a log otherwise I may loose it!!
I dont have msn ( I am on dial up!!) but you can e mail me on erica.ingham@gmail.com ( I am prob going to get lots of spam now!!)

J has blood tests tomorrow for a milk allergy ( there is gonna be tears) is matthew on a dairy free diet?

We have a monitor with the same colour lead as that one.  As my daughter gets extremely tired she has long naps during the day and we use this if she is out and about and a sats monitor at night.

I recognise this photo from somewhere, it must be almost a year old now.

I wish I had one right from the beginning, it would have stopped alot of problems.

hi have PM you

that photo is off my son does it matter how old the picture is? can get a more recent one if u like.

what is ur daughters history.

read on the sleep apnoea forum it seems to be central and u r awaiting an MRI and sleep study.

do u know how long u will have to wait for these tests?

hope u dont have to wait to long

what area are u from?

Nat xx