Hi,
I just found out on on Friday that my 5 month old have central apnea and has started oxygen. I have been reading all the other bits and pieces from other people and noticed that your children are all older then my Lilly-Rose. We found out because we brought an Angel Care Apnea mat and from 8 weeks it would go off when she had a cold. After each time that it went off I would let my GP know about it. After it going off 3 times my GP referred us to a pead, he gave Lilly-Rose a good looking over and ran some blood tests, and all looked fine. That was on the 5th of Jan. On the 17th of Jan she had a bit of a cold and had a coughing fit and was trying to breath at the same time but couldn't and turned blue. I called the ambos and she was taken to the womens and childrens hospital where they kept her for observation for about 6 hours and she seemed to be ok. Then about a month later the mat went off again and again, in total it went off 4 times in 2 nights and I called her pead and her said to take her to the hospital and get her admitted for observation. Well they did that on the 20th of Feb and one night turned into 4 and we where seen by the medical team as well as the resp team. They ran more bloods and sent her up to cardiology for a ECG, that came back clear, then they said that she would need a sleep study. So last Tuesday she went in for the sleep study and the tech was great. He explained everything to me as he ws doing it. Half way through the night he told me that he needed to turn on the oxygen to .25 litres and then later up again to .5 litres, at the time didn't think much of it. In the morning he said that her 02 sat fell to 72% and I know that that is not a good thing! So that brings us to Friday with the specialist, a really great doc, who sat us down and told us what was going to happen. Well a was and still trying to get a handle on it all. This week we are back at the hospital for more blood tests and urine tests as well as a EEG. Next week and ultrasound of her head and then back to see the specialist again. Once he has reviewed all those tests and depending on the results he has mentioned an MRI. It has all happened all so fast. We also have to see a neuro and a cardio specialist to make sure those parts of her are working well. It is all so full on.
Can anyone give me some tips.

Cheers
Emma in Australia

Hi again,

Well we were back at the hospital today for more tests. Today she had an EEG, 2 blood tests and a urine sample. The first blood test went well, they took it from a heel prick, and took 3 viles, but she handled it well. After that we went down for the EEG and not so good, she cryed and screamed the whole 1/2 hour it took to put all the probes on her head. Once that was done she settled done for a feed and then asleep. That took , all up, nearly an hour. Once we finished there it was back up for another blood test, this time on the other heel, but again not to fussed about it. We will hear back next week to see if these tests have shown anything. Will keep you up dated as next weeek we have an ultrasound coming up.

Emma in Australia

Hi Mum,

Goodness, sounds like your daughter (as well as you and your family) sure have gone through quite a lot.  
There isn't much I can help you with.  Let us know how the results of the tests go and what the doctors say.  Sounds like she's getting a lot of care.
If you still have questions, post them, or you might send a  PM (private message) to Tim050001 who has experience working with pediatric apnea, and ask him a specific question (or post it here, of course).  He might have some insights.  

Hang in there.


Linda


_________________
Click here for link to FAQ and topics
Click here for link to section on machines and masks

Yes, feel free to ask if you have any specific questions.  
I know there is also a lot of good info on these boards on the topic of central apnea if you poke around a bit.  

Good luck with everything.
tim

Hi there,

was wondering what does the oxygen do for her? does it stop the apneas, cause i have watched her sleep and she still have long pauses between breaths?

Emma
Adelaide, Aus

hello Emma
my son is nearly 3 and was dx with central sleep apnoeas at 14 months old. hes just had his 5th sleep study done.
hes 1st study showed 285 central apnoeas with desats to 82%. Matthew also has severe periodic breathing, central hypoventialtion and hypopneas.

Mattthew is not on 02 as hes does not drop dangerosuly low on the studies lowest has been low 80's. as far as im aware oxygen does not help the apnoeas, i feel ur daughter is having oxygen due to her low saturation drops.
we was told oxygen would not help matthew, and also caffine was discussed to help stimulate the breathing control in his brain but again they didnt feel it would work, also it makes children very hyper.

Matthew has had a few neurological tests for the central apnoeas, MRI, EEG (hes had loads of these as he use to have fits), there is no known reason for matthew having a immtaure respiratory drive in his brain. the older hes got we have been told hes less likely to outgrow it.

is it only central apnoeas ur daughter has? there is a genetic test, the condition is called congential central hypoventialtion syndrome. matthew was tested for this at 18 months due to the central apnoeas. thankfully it was clear, but it wasnt a 100% he could need further testing.

when is ur daughter due another study?
good luck
Natalie

Hi Natalie,

Thanks for the info. We are off to the hospital tom for the ultrasound then to the specialist on Thurs. I will ask him about the genetic condition and see if he is going to test for it, but he might have already as they ordered a range of tests last week.
Because she is on the oxygen we can't get her into childcare anywhere and my husband and I both hava to work to pay the bills. It is getting a bit stressful and I find that I am cheaking on her more then ever. Is that normal?

Emma

hi Emma
good luck for 2morrow and the speclist on thurs keep us posted how u get on

i take it u have a saturation monitor or an apnoea alarm?

matthew has had an alarm since he was 6 months old, and i did use to check him more then was paro the alarm wasnt working. now hes got older and hes on a better alarm, i dont tend to worry to much because i know the alarm will pick up a bad apnoea. obv no alarms are 100% but we have never had a prob with the abdomen sensor alarm. it is all normal how u ur feeling and keep checking her. it will pass i promise.
what 02 level is ur daughter on?

has she been having bad desats while on the 02?

good luck
Natalie

Hi Natalie,

No she is not on an sat monitor but we are using an apnea mat. It went off last night, but doc says not to worry too much and to bring her in if it goes off more thena  few times in one night. It only goes off if she is not well, and at the moment she has a cold. Her bloods show low levels of IgA, but not enough to worry about but enough to make her catch all the bugs from school and not bad enough for meds.
I wouldn't mind an O2 reader but I forgot to ask today. Am back at the docs tom so I will ask then.

Emma
Lilly-Rose 5months, Claudia 7 years

RE: "What does oxygen do for her?"

Good Question.  Especially with true central apneas, oxygen may be used to effect the drive to breath, and also to keep up oxygen saturations.  There is some good information on this forum about central stuff if you poke around for it.  I think SleepyDave maybe posted some of it, and that would be a good resource for you.  
However, If the respiratory events are obstructive in nature (caused by an actual obstruction such as tonsyls/adenoids), then oxygen will not help.  Oxygen may help to keep oxygen saturations up when a child is breathing well, but if the airway is obstructed, then the more-concentrated oxygen is likely not even making it into the lungs on a continuous basis.  

Also, if your child is only having a few central apneas, then this is okay.  Central apneas are only concerning if their are a lot of them happening throughout the course of the night.

Thanks Tim,

She had got sentral apnea and not obstructive. She has quite a few episodes through the night, how many I don't know as the monitor we use takes a while to trigger and only does when she is unwell.

Emma

Hi there,
Well it has been nearly a month on the O2 and all is well. the mat still goes off but only when she has a cold and it blocked up. we have now come across a new problem and that is nose bleeds. I spoke to the pesp nurse and it is through the irritation of the tubes up her nose all the time. We make sure that we put fess and lube up there to reduce the amount of irritation, but does anyone have anymore ideas?

We also got the time for the MRI and that will be done on Tues 29 of MAy, so we have a little time to wait.

Cheers
Emma

Hi Emma,
Life is hard for parents with children with Sleep Apnea... My son was born with central apnea nearly 11 years ago... For the first 4 years of his life it was up and down to doctors, hospitals, specialists and nearly every test available.  We lived in south africa and had to travel far and long..  I don't know if there is a specialist creache in Australia, but try and see if you can find a medical school so that you can go back to work... South africa never had this as a offer so i could not go back to work...  After 3 years of struggling, we resettled in the Uk so to see if we can get a better life and yes we did..... Brendon was not as bad in England as he was in South africa...something to do with the wet air.... but he settled well here and threived.... The doctors here are fantasic.... Brendon get treated at great olmand street hospital... but he is nearly 11 years old (next month) and it is great.... but you do need to speak to other parents that have gone through this from the beginning...We have never recovered finacially from day one so it is very hard.... we are very lucky in the uk...we don't pay for any medical at all.... so we are getting there....  my heart goes out to you at this time as i have been there and done it all..... it is a hard road to travel but just remember there is a light at the end of the road...... Brendon was born with CA from day one...... we had a couple of ALTES but he always came through... If you ever need a chat ....you know where i am...take care Mandy Smith UK

Hi all,

Well it has been some time since I have had a chance to write anything. But here is an update. Lilly-Rose is now 7 1/2 months and doing well, at least most of the time. We saw the cardiologist and her heart is fine. We then went for chest x-rays, but haven't heard anything, so I guess no news is good news. After that we had an appointment with the pead and her development is on track, her wieght or lack there of is to be watched and now we are on 3 week weigh ins. She is also dairy intolerant and maybe soy as well, we will not know for a couple more weeks. It is not long until we have the MRI. 2 weeks tomorrow. We are off to see the palmonary specialist next week, so I will let you know how things go with that. Anyway my new problem is finding someone to watch her for me for 2 hours a week, and I think that we have made some progress. I have someone with the Northern Respite Network onto it for me, hopefully I will hear something soon.

Emma

what are ALSTE's (was that the acronymn used?) and how is periodic breathing different from apnea?

--nebie mom to 23 yr old w/undiagnosed central apnea (and possibly some obstructive too)