hello all
im new here im not from america im from the uk, but i hope its ok to b here
my son matthew is 15 months and has had sleep apnea since he was 6 months old,but its only now we know the full story about it
2 sleep studies have showed pauses in breathe
and after me finding him lifeless last week we spent 9 days in hospital
we saw the neuroligist (matthew is under them for episodes which r like seizures) they have told us matthew airways etc r fine the problem is coming from the main central part of his brain
he will need a MRI under GA, they also want to give him a 4th EEG but this time when he sleeping, they also want to repeat the sleep study, do a bulbar EMG, repeat his videofluscorpy and they also think he has a genetic condition
we r hoping that app for all the tests come soon, we r probably looking at 5 day stay but been told we could wait at least 4-6 weeks as theres a wait for  A MRI under GA

does anyone else child apnea caused by the central part of there brain?
we r now waiting for the MRI to give us more answers

thanks
natalie

mummy2hollyandmatthew wrote:

hello all
im new here im not from america im from the uk, but i hope its ok to b here
my son matthew is 15 months and has had sleep apnea since he was 6 months old,but its only now we know the full story about it
2 sleep studies have showed pauses in breathe
and after me finding him lifeless last week we spent 9 days in hospital
we saw the neuroligist (matthew is under them for episodes which r like seizures) they have told us matthew airways etc r fine the problem is coming from the main central part of his brain
he will need a MRI under GA, they also want to give him a 4th EEG but this time when he sleeping, they also want to repeat the sleep study, do a bulbar EMG, repeat his videofluscorpy and they also think he has a genetic condition
we r hoping that app for all the tests come soon, we r probably looking at 5 day stay but been told we could wait at least 4-6 weeks as theres a wait for  A MRI under GA

does anyone else child apnea caused by the central part of there brain?
we r now waiting for the MRI to give us more answers

thanks
natalie

Hi Natalie,

A very worrying time for you. My sympathies.

I'm not well up on children's apnoea, but it sounds like Central Apnoea or Cheyne Stokes breathing disorder. The fact that your child is being seen by a neurologist is comforting. The expected wait is not.

If you are bringing your child home with you I would suggest that you get an Apnoea Monitor (should be available free under NHS).

For support (as you are in the UK) you might contact the Sleep Apnoea Trust Association (SATA), 12A Bakers Piece, Kingston Blount, Oxon OX39 4SW. Tel: 0845-6060685. They have a web site at www.sleep-apnoea-trust.org and email at sata.admin@tiscali.co.uk. They are a registered charity and are staffed by volunteers.

They have a number of helplines (details on site), some of whom are manned by medical personnel. If the person you phone can't help, they should be able to connect you to someone who can.

Please keep us advised.

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

hello thank you for ur reply
yes matthew has been diagnosed with central sleep apnoea, they were hoping hes reflux was causing it, but thats not the case now
so we have to wait for the MRI now
thnaks for that wedsite u gave its very helpful

also matthew has been given a apnoea alarm now, we had one which goes under the mattress but it broke so my hosp have gave me one
we have been using it for 1 week now and matthew has had  10 apnoeas

i have now recievered resus training so if he stops breathing again and i cant get him bretsahing i know what to do

do u know if its dangerous to have a certain amount of apnoeas in one night?

i wasnt told this and just wondered if he had loads would i need to get him seen

natalie

mummy2hollyandmatthew wrote:

hello thank you for ur reply
yes matthew has been diagnosed with central sleep apnoea, they were hoping hes reflux was causing it, but thats not the case now
so we have to wait for the MRI now
thnaks for that wedsite u gave its very helpful

also matthew has been given a apnoea alarm now, we had one which goes under the mattress but it broke so my hosp have gave me one
we have been using it for 1 week now and matthew has had  10 apnoeas

i have now recievered resus training so if he stops breathing again and i cant get him bretsahing i know what to do

do u know if its dangerous to have a certain amount of apnoeas in one night?

i wasnt told this and just wondered if he had loads would i need to get him seen

natalie

Natalie,

Where children are concerned, as far as I am concerned, one apnoea event is one too many.

If he continues to have events I would take him straight to your nearest ER and push hard to get the MRI as quickly as possible. Teaching you to resus him, while a good idea, is no reason to delay the MRI.

I know you are probably banging against a brick wall, but please continue to do so. The NHS are not being fair to your child.

Very best of luck, and if I can do anything to help just send a PM.

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

hello and thanks again
well last nite matthew had 9 apnoeas in 25 minutes, 4 of them he needed stimulation, and the other 5 he got himself breathing so i didnt neeed to do anything

so these recent ones mean he has had 19 apneas  since the 18th oct,

i rang the neuro nurse again, and we r still waiting to hear, but coz he needs the mri under GA theres a longer waiting list

so all we can do is wait really til hes nxt app

im so tired of this all, i have just requested matthew to have a blood test as im worried hes mybe low on iron, as he sleeps way to much i feel, and is very pale

hes nxt hosp app is booked for the 11th nov so nearly 2 weeks away and i know that is gonna b  a wate of time as the paed at our hops is more than useless


Natalie

mummy2hollyandmatthew wrote:

hello and thanks again
well last nite matthew had 9 apnoeas in 25 minutes, 4 of them he needed stimulation, and the other 5 he got himself breathing so i didnt neeed to do anything

so these recent ones mean he has had 19 apneas  since the 18th oct,

i rang the neuro nurse again, and we r still waiting to hear, but coz he needs the mri under GA theres a longer waiting list

so all we can do is wait really til hes nxt app

im so tired of this all, i have just requested matthew to have a blood test as im worried hes mybe low on iron, as he sleeps way to much i feel, and is very pale

hes nxt hosp app is booked for the 11th nov so nearly 2 weeks away and i know that is gonna b  a wate of time as the paed at our hops is more than useless


Natalie

Natalie,

What part of the UK are you in ?  County ?

I have a contact in one of the larger hospitals............who might be able to help.

This is not a case for a paediatrician.

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

natalie,
just found this site and saw your message, I am in the uk as well and my 8 1/2month old son has had apnoeas since he was 3 weeks old, been in hospital so much , had so many tests and been in intensive care 3 times, still no proper diagnosis , he has a sensor monitor on every time he sleeps and frequently has apnoeas some of which he needs help to come out of.
We are seeing our ped again on the 11 th who is fantastic but i wish they could give us an answer!!
I will definatley be mentioning some of the tests you have listed as there is at least 2my son hasn't had.
Keep fighting your corner, it is the only way , try and stay positive, i know how hard it is.

Let us know if you get any further

And if anyone else can think of some suggestions , i would be grateful!

best of luck

Claire

Hi,
At last have I come across a site which I have found something of great help, interest and encouragement. I too am from the UK (Shropshire) and have been wishing I could find other people with children who suffer from the same condition.

My 3yr old son was diagnosd with central apnoea after an episode at 8 1/2months of age where my husband and I had to recuscitate him. He had every test you could think of and the eventual course of treatment was low flow oxygen whenever he slept. This aleviated the number of apnoeas per night and we even went 2-3 days without having any.

This was stopped when he was 27months old, subsequently his apnoeas returned and we go very few nights without having any. He had a sleep study in Sept which showed that he was having apnoeas. The longest of which lasted for 115seconds and a desat of 65%.

The consultant he is under at the moment is not sure how to go forward with this. He has a milk protein allergy, suffers from reflux(which is not causing the apnoeas),has been anaemic, has absenses and failure to thrive.

On top of all this, I have a 1yr old daughter, who from the age of 7 hours also suffers from CA. She too has the milk protein allergy, is anaemic, reflux, absenses (which are increasing and not being investigated), heart murmur (not investigated) and severe failure to thrive. She however was treated from the start by a different Paed who did not want to acknowledge that she has the same problem as her brother. She has not been put onto low flow oxygen, but is a possibility.

I can't remember the last time I had an uninterrupted nights sleep. We have 2 apnoea monitors ticking away each night, and as I type this, one is alarming now!!

It would be great to be able to contact people through this site in order to help support and possible solutions. We have not had any genetic testing done on either of them. Maybe ther is a link there? Who knows?

We are now thinking of changing Paed to see if we can shed some more light on the matter and get to the bottom of it, especially with our daughter.

I can sympathise with all you mums and dads going through these hard times.

If anyone has any suggestions of further tests which could be done then I would love to know.

Thanks
Andrea