My 2year old has been diagnosed with apnoa. His tonsitils look ok so they put it down to his reflux having come back. He is on max reflux medicines (omeprazole, domperidome and gaviscon) but the sats havent really gone back to normal. what should we do next?

Also I am wondering if his sats are a bit weird - could it be the monitor? His average is 98 but it suddenly crashes to 88 within seconds then straight back up. During this time his pulse is also high and rather erratic. It does this about 4 times a night but is often suddenly dropping below 95 (about 25 times a night) although in total he is only about 3 mins under 95. The doc says this isnt normal and not good enough. Can anyone advise? Could it be due to something else not the reflux?

Thanks for your advice

hello and welcome
my son is 2 also and sufffers from sleep apnoea and severe reflux
hes on domperidone, gaviscon, lansprazole and erthymycin

has ur son had a sleep study?

i see ur from the uk where abouts in the uk are you.

is he on a sats and apnoea alarm?

matthew apnoeas where first put down to his reflux, but as they got worse a month later he was admitted as an emergency and had another sleep study done and this found in fact hes sleep apnoea was related to his brain, so he has central sleep apnoea

the most apnoeas hes had in hosp was 285 in one night with low sats of 82% he had about 48 dips of saturation an hour.

r u under a specialist?

Thanks for your reply. The last 2 nights have got worse and I am wondering if his reflux isnt the problem! I am going crazy trying to work out what is causing these apnoeas.

We are under an e&t guy and live in warrington. I am wondering if we need a special apnoea person (any recommendations or are you under and e&t guy too?)Can I ask you a few qns? How did they diagnose the central apnoea and deceide it wasnt reflux? Also what is his baseline (average every night) josh's is about 97 but can drop to 85. I am unsure what they call a desaturation is is 4percent drop for 10secs or more? If you can help me out with some answers I would be very grateful as  it is all so vague and I feel a bit like we are stabbing in the dark. After all that gaviscon, domperifone and omaprazol I would expect a big improvement.

hello
i will give u a brief history of matthew in the hope it may help u find some answers.
matthew has always been a poorly child from birth really. he started at 8 weeks of age with having seizures, this continued, 6 months he contracted bronchiltis and we was worried by his breathing we bought an angel care alarm which would alert us uf he had any diffucties, this went off consent, kept on to his paed, kept getting told this was normal. matthew continued to have apnoeas, then started suffering with his weight and developed a diary allergy. he had re current chest problems, plus had problems eating, he would just choke.
at 9 months old matthew was started on medcine to treat epilepsy. we was referred to a neuro at great ormond street who r now our saviour.
he was seen at 14 months and they were not sure what was going on so admitted him for 5 days worth of tests.
they arrnaged a barium swallow which looked at the stomach and eosphagus, videofluscorphy whihc looks at any adnormal in the swallowing, he had a ph study, sleep study and EEG. the EEG, barium swallow was normal, but hes swallowing xray, ph study and sleep study where abnromal. they thought all these abnormal results where due to severe reflux he was experiecing, and put his seizures down to this. they satrted him on medication and would review him in a few months time, hoping the reflux meds would improve his sleep.

anyhow matthew had other ideas, and got worse in the month following, was admitted again to Great ormond st and had another sleep study done. we then got a visit from the neuro telling us that matthews apnoeas where due to a immuture resp drive in his brain and wasnt reflux related and would need further investiagtions. this was in oct last year.

we r not under ENT, we r under neurology and respiraotry. matthew is on a graseby mr10 respiration monitor supplied by our local childrens community nursing team. we have had it for a year now.

they normally do a ph study alongside a sleep study, on a sleep study reflux would show up an an obstruction, but central apnoeas r where the brain isnt sending the messages to the mucsles to breathe.

matthew has required mouth to mouth resus on 2 occasions and also put down as having a cardiac arrest, hes apnoeas get worse when hes ill.

a desaturation is where the oxygen levels in the blood drop, so average sats r about 96%+ but drop when a apnoea is taking place
mathews lowest sat drop on a sleep study is 82%.

do u have a saturation monitor then to know the desauration monitoring?

what tests has ur son had done to determine he has reflux?

Thanks for your reply. Sorry to hear Matthews story. Its very sad that your little man has been so sick.

Josh has an oximeter which i had to buy (!!) as the hospital had none left to loan out.This has an alarm and says the number of events in a night. Some night seem much better than others with no obvious explination ( do you have this?)
He stopped drinking bottles around 4 mths and was screaming a lot the stopped breathing in his sleep. Went from being fat to falling off the curve. No obvious cause was found but i did some research and suggested silent reflux. they agreed and put him on zantac and he gradually got better and was eating well although always with persuasion and never like tha average kid. He weight really improved though.

Suddendy before he was 2 his apnoea alarm started going off every night (it hadnt gone off for about 6 months) and he looked a bit blue.The doc admitted him checked his stats and they were lousy. After 3 days of omeprazol they were  perfect and the diagnosed reflux causing the apnoeas and let him out. But since then his alarm has been going off on the stats monitor up to 7 times a night ( it is set at 90) So we are back on monday. The doc said his tonsiles look ok but he might put a camera down for a look and take his adenoides out. I am not keen though on him having an aenestetic unless we know what the prob is. He mentioned the central sleep apnoea as a possible cause if its not reflux.

We are waiting for the barium meal the ph test 1 year ago said no reflux?

Can I ask you about your sats monitor - what kind of probe does it have is is a clip? As I think mine is a bit unreliable. someimes he is on 96 and i move his foot and it goes to 98!

Also joshs 'sleep study' was just wiring him up to a sats monitor for the night. Did they do anything else in mathews? if So I might ask for it on monday.

Is Matthew ok when asleep in the day?


Thanks for al your help. I often think the mums know better than the docs as they become the real experts!

Erica

hello
sounds like u have had a pretty !@#! time to

can i ask how much u had to spend on a oximeter. when u say episodes hes having im right in thinking this is a drop in saturation?
a drop in saturation doesnt always mean apnoeas. peoples 02 levels drop when there asleep.

what u need is a apnonea alarm which sticks on the abdomen and goes after after 20 seconds if no breathing is detetced. this is what matthew has we dont have a saturation alarm.
and i think the oximeter u have is meant to spot checks or for tiny babies not for continous use all night.
when matthew has been hooked to a saturation monitor, he has a plaster type thing with a red light  find these more accurate than the crocodile clip.

i think without further investigations into sleep apnoea u wont know the cause u need to ask the paed to refer to u i assume would be london? dont know if that is nearer to u or not. i know sheffield have a childrens unit who specilise in sleep studies.

being hooked to a saturation monitor isnt a detailed sleep study
a sleep study records, resp rate, c02, heartrate, o2, snoring, how much movment it is brillant

here is a piccie of matthew's last one doen in august.



matthew use to only suffer his apnoeas in the night when he was in a good sleep but that soon changed and he now has them whenever hes asleep but they r more prone at night.

i would defo ask to be referred to a specilist on sleep apnoea, apnoeas cannot be diagnosed without the right equipment.

Thanks for your reply. Bless him he looks a cutie asleep!
we went to the paed and he is not doing anything yet untill he has seen a gastro doc and had the videofluroscopy. I am still waiting for the appt though. I asked about the sleep clinic and he said there was none near us and they often wont sleep in them. I want a proper study done before any ops though so am waiting to see the outcome of the tests and gastro doc. we are still getting alarms but only one a night for the last 3 nights. It has done this before though and suddenly gone to 7 a night so I am waiting for all my optimism to be smashed again! He has a long duration monitoring oximiter on which alarms if his sats drop for less than 89 for 10secs or more. My old alarm the apnoea sensor alarm is a bit rubbish as it is a tommee tippee babies one so he can move off the pad and then it goes off and frightens the hell out of everyone for no reason! Where did you get yours from and what is it called? It sounds much better. I dont want to use the oximeter all the time as it tingels his toe which anoys him in his sleep, I would recommend it though even though it was 895 quid on my credit card!!! ( the hospital didnt have one available as they were all being used!) There are much cheeper ones but they are not all for long term monitoring and dont all have alarms or are hospital standard.

hello again
keep pushing, u know ur child better than anyone else. we have found this out with both my 2. it took months and months for my local to do anything about matthew, and when they did he said he wasnt having apnoeas. so im juts glad we got the referral to GOSH. they have been our life savoury.
wow 895 is alot for an alarm, im really surprosed u had to buy one.
Matthew got his from the Community Nursing team at our local hospital, GOSH said he would need to have one if his angel care one broke, and it broke so they had to give us one.
he has the Graseby MR10. here is a link hes is the 1st one of the picture http://www.hagamedical.nl/prod06.html

for a child to be formally dx as sleep apnoeas they will need to see a respiraotyr specilist, or ENT if its being caused by obstrcution.

i think doing a VF is a good idea, i would also suggest another PH and also a upper Gi series, these tests will let u know what is going on.

is london nearer to you or cambridge. becuase i was thinking if u was central between these 2 u could ask to be referred to any of these, or you have alder hey in liverpool.

keep on ta them hes ur child you know best

Thnks for info. I was pritty shocked at having to buy the monitor too but I was left with the option of staying awake or taking my chances and hoping he didnt stop breathing. Neither was acceptible to me. I think they should have found one from somewhere. Good job I did get one as I am getting alarms all the time. Had 7 the other night. Whats an upper Gi?  Is it an xray or a scan? I will add that to my list of requests!!

Getting tired worrying and just going along not knowing what is causing this. My worry is that he is on max reflux medicine and still having apnoeas so it is reflux? Is he getting all this medicine for no reason?

We see the ent guy who I like as he is the first guy who seems to take it seriously and give a ****. It dosent look like obstructive apnoea tonsitills size though so we are off to the gastro guy in 3 weeks. If nothing definative then I want a sleep study. Do you know if alderhey do them then as they are really near me?


When happens when matthew gets out of bed? Is he still plugged into the monitor? Not sure what to do with josh as he is getting pritty quick at getting his leg over the cot so really need to take the sides off but his toe is attached to the oximeter. Wondering if there is an apnoea alarm that dosent attach to them but is suitable for older kids who move around the bed so it covers a large area with a few pads or something. Do you know of any?

hi holly and mats mummy I replied to you about josh's sleep study on a later post about 2yr olds. Lets wish for less apnoeas in the new year!

hi ya
yes less apnoeas would be great but matthew has come down with a nasty cough which is making his apnoeas worse

Happy new year