Really need advice,please read.

cathy01

My daugther is 8 and has epilepsy.We are hoping to get some type of alarm to notify us when she is having a seizure.Big problem is, she doesnt have clonic-tonic seizures.She has ones where she behaves strangly and appears confused.She has them maily at night.Our biggest concerns are

1, vomiting after seizure, this is a reguler accurance and sometimes the only way we know whats happened.

2, We suspect that she is starting to have more psyical siezures as she had a huge bruise after the last one , and cant remember where she got it.

3 Leaving the bed after the seizure, shes confused, we have stairs, shes 8.Normally she would just wonder as far as the door and I would hear her, but lately , due to me being 4 months pregnant, I hear nothing as Im so exchausted.

So , doctors cant recommend any type of alarm, There are no alarms avilable for complex-partical seizures, Brainwave have been a huge help and have sent me a list of 2 companys.Im worried that they may not do what we need them to do ,
Here is information on one of them , if anyone could give an opinion.

The Medpage MP5 incorporates a bed sensor for convulsive seizure detection and is equipped with a microphone for the detection of aural sounds. Three simple controls provide bed sensor and microphone sensitivity and movement alarm delay. The sensor is positioned under the patients mattress. Should seizure activity begin, the sensor detects the abnormal movement. When the movement has continued beyond the delay setting an alarm is generated. The built in microphone is to detect aural sounds such as choking, grunting or screams etc. Detected sounds will cause an alarm. The MP5 is equipped with a transmitter that sends an alarm signal to a radio pager. The MP5 is supplied with two radio pagers. The MP5 provides reliable seizure detection at an affordable price and is suitable for domestic and professional care use.



Monitor dimensions L 150mm W 105mm D 45mm

MP5-TWIN is equipped with 2 x bed sensors and audio microphone.

Seizure detected LED lights to warn of a detected seizure

Powered by 12V charger with battery backup

Power status and movement detection LED’s

Movement sensor: Lead length 3M

Dimensions: L75mm W 55mm D 25mm

Silent alarm, no internal sounders.

Internal output connector for linking to auto dialler or nurse call system.



Pagers:



Powered from 2 x AA batteries. Lightweight and compact with sturdy belt clip. Alarm options are: vibrate only, vibrate with low volume alarm tone, vibrate with high volume alarm tone. Also includes flashing LED on alarm. Low battery warning. Operating temperature -10c - + 50c. Dimensions: H 80mm W 60mm D 28mm Weight including batteries 125gms.



MP5 £180.00 + VAT VAT EXEMPTION AVAILABLE IN THE UK

MP5-TWIN £190.00 + VAT VAT EXEMPTION AVAILABLE IN THE UK


The other one is bought in Ireland and is very similer but 200 euro dearer.
Sorry about the long post.Esp on a Saturday morning.Thanks for any advice , Cathy.

imokyrok

Have you contacted the manufacturers? I'm sure they can be traced easily enough with google. Tell them about your daughters condition and ask them if the alarms might help. The one you described does sound like it would pick up any choking activity if your daughter vomits in her sleep but I'd speak directly to the manufacture to be sure.

The CRC -central remedial clinic in Clontarf are good on technology and could give advice I'm sure. I'd say this is a problem they will have dealt with regularly. http://www.crc.ie/

I'm sure you've thought of a child gate for the top of the stairs. Another possibility might be an ordinary household alarm movement detector on the landing or hall. I think they can be beamed to cover the top of the stairs or the hall downstairs if your daughter got through the gate.(you want to be able to access the loo without tripping the alarm.)

cathy01

Thanks for taking the time to reply.I managed to get an Irish based company, but they are much dearer, but they come to your house and set it up asits very sensitive.First few times it went off 6 times a night.Medication was upped and last night it only went off twice!!!!!!
I think it was €500 , but its something we HAVE TO HAVE to save her life.Thanks for reading, I really appricate it,Cathy

Joey the lips

I dont know about the alarm but we had this problem with nose bleeds and were afraid of our child choaking so was suggested we stitched tennis balls into the back of his PJS ensuring he only lay on his side or belly.

Just a tip I have yet to try it.

cathy01

Thanks Joey, we went for one that is Irish, cost a bomb, but things where just getting worse and worse.Cathy

tammyme

Cathy,

If you wouldn't mind could you please PM me the info of the Irish company you got the alarm from? My niece has very serious seizures which severly affect her breathing- we had a horribly close call last week and since she came out of hospital nobody in the house is sleeping, we can't keep going like this and desperately need something to put our minds at rest ASAP!! all the ones we're finding on the net seem to be out of stock or in america

cathy01

hi ya,Ill have a look and get the number but in the mean time Ring Ina or Geraldine at brainwave.Cathy

tammyme

will do, thank you!

cathy01

As a cheaper option the Angel moniter is very similer .It goes off if the alarm doesnt regisiter a heart beat for 20 seconds.So if the person is chocking, or has left the bed the alarm will go off.Only thing is the sensor pad is very small, but its worth a try.I think its about 50 euro in argos.Compared with 800 for the alarm and pager system.Cathy

tammyme

Hiya,
We used to use that and unfortunately it didn't work twice when crucially needed- it was fine for bed absence but didn't register that she had stopped breathing at all- it was pure luck that we checked on her when we did, so we never used it again. thank you for letting me know though!

cathy01

tammyme wrote: »

Hiya,
We used to use that and unfortunately it didn't work twice when crucially needed- it was fine for bed absence but didn't register that she had stopped breathing at all- it was pure luck that we checked on her when we did, so we never used it again. thank you for letting me know though!

I think it was ihs I got the details from brainwave. Did you get sorted???