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alarms and ways for dd to let someone know im having a seizure?

(9 Posts)
Emmielu Sat 20-Oct-12 11:34:57

im moving out of a friends house to live on my own just me & dd, on the 8th november. I have had a lot of seizures this year & although i dont want dd to have the responsibility of looking after me while im having a seizure and calling an ambulance while waiting for someone to come to look after her too, i'd like her to be able to only have to call a friend or family member easily so that she can be looked after as well as me.

DD is 5 and i've heard of a panic button system that connects to someones house or phone line when im in need but if that person isnt there then who does DD call for help? I had a thought, maybe if i get a basic mobile phone and only have 9 numbers on it so each speed dial number calls someone who can come and help then dd could use that. Is there anything else i can get for DD to use?

ManifestingMingeHooHoosAgain Sat 20-Oct-12 11:40:07

The careline systems that can be provided eg to the elderly might be worth looking at - you or DD could press the button to get help. It contacts a relative for you or the ambulance if needed. They have a pendant and a big button on the box. I think a 5 yo would manage it.

But I would be a bit worried about something going wrong in the night and DD being frightened too - does the Epilepsy Society have any advice/support that might help?

As was said in the previous post you could have a careline/ lifeline installed in your home and connected to it you can wear a fall detector in the daytime that will set the lifeline off and at night you can have an epilepsy sensor on your bed that will automatically trigger the lifeline. When the alarms are triggered the lifeline dials through your phone line to a control centre who would call an ambulance for you and also phone through the list of contacts that you would give them until they got someone to come to dd. This service is telecare and is part funded through the county council. I install it in Staffordshire and the service costs £5.15 a week here. If you get some benefits I.e carers allowance/ attendance allowance there is a annual grant of £300 to pay for services such as telecare. If you want anymore info or are in Staffordshire feel free to message me. (hope this all made sense I'm seriously sleep deprived from a teething 7 month old!)

Emmielu Sat 20-Oct-12 12:49:46

DD has seen me have seizures throughout her life so far but she hasnt been in the situation yet where shes had to use the phone to alert someone, she has left me in the room to go and get someone though.

Telecare would mean you wouldn't be relying on her to get help it would all be done automatically. I know of several other people on your situation and the children all cope amazingly well. If you just got a simple lifeline/careline all she would have to do is press the big red button on a box. This has been successful with children aged 3 and up. You might also want to think about getting a keysafe put outside your house so the paramedics can let themselves in to you.

Emmielu Sat 20-Oct-12 15:28:15

I'm worried it'll cost me a lot of money per month. I only usually have a seizure once a year but this year has been worse due to stress. Im trying to find ways to help curb seizures like changing my diet and will be seeing my gp about it all on monday but i still think its worth having something. I just dont want to spend lots of money if i can prevent it being used. If you see what i mean.

dopamax Fri 02-Nov-12 16:04:07

hi, I have epilepsy due to a brain tumour. Although better controlled now dd age 9 it was not 3 yrs ago and we on our own.
She had/has basic mobile with her nan and aunts number in. Taught at early age 999. When was discharged from hosp after initial diagnosis adult social services fitted a panic alarm in as described by pposters. I wore pendant around so if fell alarm went off. Base of alarm that connected to phone has massive red button that she can just press.
Pay monthly for this which have to say is a struggle, believe it should be free for certain groups. Also have a keysafe aswell. Not easy on the children is it!?

LadyMaryCreepyCrawley Fri 02-Nov-12 16:07:42

I remember watching a TV programme where a dog had been trained to sniff out a fit before it happened, and notified his owner so that they could get some help. It was a while back though, so I can't remember what the programme was called. Maybe the Epilepsy Society would know of the scheme?

Emmielu

I started teaching my son from the age of about 4 how to contact somebody if he needed to. I am a single parent and although my medical conditions are fairly benign, I also had (and have) a fear of something happening to me and him being alone in the house unable to contact anyone (think falling down the stairs or worse).

My housephone has an easy to access phonebook in which numbers can be saved. Not speed-dial, but you press one button, then scroll down and ring. I made it so my Dads mobile was the top number, and taught ds how to ring that number. Mum and Dad had numerous early morning phone calls, where he woke early and fancied talking to them so went and phoned them (think 5am and similar times!), but they appreciated it was better than the alternative scenario (and before suggestions are made of keeping the phone out of reach - if the phone is out of reach, how else will the phone be accesible in an emergency?)

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