Epilepsy Support Group

[mum2beagain]

Do any of you have an apnea monitor due to their epilepsy?

I spoke to Findlay's development consultant about one as I was concerned that if he has a seizure overnight and we don't know about it and he doesn't start breathing again (he stops breathing and goes blue during them) we won't find out until the morning which is too late.
She told us that apnea monitors aren't reliable for babies his size (and seizure alarms aren't reliable either) and to just use a baby monitor which is fine if I am awake to hear him make a strange noise at the start of a seizure but otherwise we won't know that he has had one.
Findlay had a Respisense breathing monitor when he was younger so I am seriously looking at buying him a new one for peace of mind (the batteries died in his old one and aren't replaceable) but I just wondered if any of you had apnea monitors if your LO has a tendency to stop beathing and go blue during seizures.

hi hun my sil s little girl is 2 she was born with brain damage and she has severe epilepsy she has an apnea monitor under her sheet in the cot its preety good only ever gine off during a seziure never just gine off on it own owever the hops and hv have told sil she has to stop using it now as they want it bk my sil is so reliant in shes very nervouse about nt having it any more xx

 

[scottishgal89]

Do any of you have an apnea monitor due to their epilepsy?

I spoke to Findlay's development consultant about one as I was concerned that if he has a seizure overnight and we don't know about it and he doesn't start breathing again (he stops breathing and goes blue during them) we won't find out until the morning which is too late.
She told us that apnea monitors aren't reliable for babies his size (and seizure alarms aren't reliable either) and to just use a baby monitor which is fine if I am awake to hear him make a strange noise at the start of a seizure but otherwise we won't know that he has had one.
Findlay had a Respisense breathing monitor when he was younger so I am seriously looking at buying him a new one for peace of mind (the batteries died in his old one and aren't replaceable) but I just wondered if any of you had apnea monitors if your LO has a tendency to stop beathing and go blue during seizures.

hi hun my sil s little girl is 2 she was born with brain damage and she has severe epilepsy she has an apnea monitor under her sheet in the cot its preety good only ever gine off during a seziure never just gine off on it own owever the hops and hv have told sil she has to stop using it now as they want it bk my sil is so reliant in shes very nervouse about nt having it any more xx

why do they want it back?

 

[TattiesMum]

I'm sorry that you are all having to cope with this

Please don't take this the wrong way, as I am certainly not meaning to trivialise But I have a dog with epilepsy and, because so little medication is available for animals with it we are forced to really work hard at figuring out triggers and I wondered if some of our known triggers might be of any help to you guys (after all the epilepsy is still the same neurological condition)


Our main one is electrical signals .... TV is the worst but radio, the computer and kitchen appliances can all trigger siezures.

Loud noises - particularly repetitive ones like road drills, children screaming.

Fear/Stress/Anxiety

Bright lights - particularly fluorescent

 

[mum2beagain]

Do any of you have an apnea monitor due to their epilepsy?

I spoke to Findlay's development consultant about one as I was concerned that if he has a seizure overnight and we don't know about it and he doesn't start breathing again (he stops breathing and goes blue during them) we won't find out until the morning which is too late.
She told us that apnea monitors aren't reliable for babies his size (and seizure alarms aren't reliable either) and to just use a baby monitor which is fine if I am awake to hear him make a strange noise at the start of a seizure but otherwise we won't know that he has had one.
Findlay had a Respisense breathing monitor when he was younger so I am seriously looking at buying him a new one for peace of mind (the batteries died in his old one and aren't replaceable) but I just wondered if any of you had apnea monitors if your LO has a tendency to stop beathing and go blue during seizures.

hi hun my sil s little girl is 2 she was born with brain damage and she has severe epilepsy she has an apnea monitor under her sheet in the cot its preety good only ever gine off during a seziure never just gine off on it own owever the hops and hv have told sil she has to stop using it now as they want it bk my sil is so reliant in shes very nervouse about nt having it any more xx

why do they want it back?

im not exactly sure i think because they feel she no longer needs it although my sil has become dependant on it bless her

 

[scottishgal89]

surely she can request to keep it.
does her daughter have seizures all night?
if so, then it could be unsafe to take the monitor away

 

[Marleysgirl]

Just an update for the thread - Andrew's EEG today showed marked improvement in the hypsarrythmia, so they have effectively signed him off from being monitored. I am simply to watch for any signs of the spasms returning or other seizures developing.

I am aware that we have had a really lucky escape this time, and that many of you are going through huge problems with epilepsy. I send hugs to you all

 

[scottishgal89]

im so pleased for you.
was the EEG completely normal or just getting there?
is he completely weaned off the prednisolone now?

 

[Lottie86]

That is fantastic news about Andrew

 

[Marleysgirl]

I think the EEG is "getting there" rather than gone completely, but they didn't exactly say. He's completely off the Prednisolone - he had two weeks at full dose, and then two weeks of reducing dose to wean off.

I am to phone them should the spasms start up again, and I've got some leftover Pred in case they want to tell me to re-start the same medication.

 

[Jemma_x]

Im so glad andrew EEG showed improvement.

I have epilepsy myself and Connor has had 3 seizures since he was born, connor hasnt had an EEG or MRI because of him only having 3 but if he has anymore thats the first thing there going to do. How are all your babies doing?

 

[mum2beagain]

surely she can request to keep it.
does her daughter have seizures all night?
if so, then it could be unsafe to take the monitor away

she has seizures at all different times during th day and night but her apnea hasnt gone off for a few months now so the health visiotr ans specialist feel its time to stop using it they have told her if she wants to keep it she will need to buy her own she has explained to them that she wouldnt mind giving it bk but that she feels she needs to wean herself off it gradually as she is reliant on it she was told that it would be unlikely jasmin would survive past 15months she was 2 in feb and my sil is soo scared of losing her

 

[scottishgal89]

yeah its horrible when they put odds against them.
i try not to think about them about my daughter because it doesnt look good.
are they ok with her weaning herself off of it then?

 

[scottishgal89]

Has anyones little one been on or on Topiramate just now?