recently was given a epilepsy sensor bracelet by the social services epilepsy team and it has helped staff know straight away several times when they have gone to the office or lounge so they have been able to rush in.
this is it;
it looks like cheap plastic crap but is a fantastic bit of kit,life saving.
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Friday, 6 June 2014
Tuesday, 27 May 2014
epilepsy; its serious business
have gone two days without having a tonic clonic epileptic seizure,it seems the worst might be over.
have been suffering with severe epileptic cluster seizures for two weeks and have been in hospital multiple times,one time had had a trachea tube put down throat,and another bad time;attached to an IV and on every monitor going in resus [the intensive care of emergency medicine] due to suffering from quite severe tachy cardia after the seizures and not having come around due to having so many of them.
the heat seems to be a major trigger for them,and am not sure if they are directly causing them-which mum and dad seem to think because they saw it happen when was a toddler, or if the heat is causing stress and the stress is causing the seizures.
luckily the weather has changed from heat waves to colder weather,its a common difficulty for people with autism to control their body temperature but that hasnt been looked at as doctors in that area of medicine arent disability specialists.
have been increasingly suffering with the seizures ever since had had epilepsy medication halved to just over one thousand mg whilst was detained in greenways intelectual disability hospital,though doctors didnt have this in their notes,used to be on the maximum possible doseage of tegretol.
have been refered to the neurologist again,but if they request yet another bloody EEG am never having another one as far as live,last time had had one to see whether severe challenging behavior was being caused by the epilepsy [it wasnt] they had to keep using a special knife to cut off the super glued on electrodes then reaplying them several times a day for three days because had had so many challenging behaviors due to being put in a different environment and in a different routine, the neurologist said it was the worst damage he has ever seen to a scalp,still have a patch on head now which hair wont grow through.
have been suffering with severe epileptic cluster seizures for two weeks and have been in hospital multiple times,one time had had a trachea tube put down throat,and another bad time;attached to an IV and on every monitor going in resus [the intensive care of emergency medicine] due to suffering from quite severe tachy cardia after the seizures and not having come around due to having so many of them.
the heat seems to be a major trigger for them,and am not sure if they are directly causing them-which mum and dad seem to think because they saw it happen when was a toddler, or if the heat is causing stress and the stress is causing the seizures.
luckily the weather has changed from heat waves to colder weather,its a common difficulty for people with autism to control their body temperature but that hasnt been looked at as doctors in that area of medicine arent disability specialists.
have been increasingly suffering with the seizures ever since had had epilepsy medication halved to just over one thousand mg whilst was detained in greenways intelectual disability hospital,though doctors didnt have this in their notes,used to be on the maximum possible doseage of tegretol.
have been refered to the neurologist again,but if they request yet another bloody EEG am never having another one as far as live,last time had had one to see whether severe challenging behavior was being caused by the epilepsy [it wasnt] they had to keep using a special knife to cut off the super glued on electrodes then reaplying them several times a day for three days because had had so many challenging behaviors due to being put in a different environment and in a different routine, the neurologist said it was the worst damage he has ever seen to a scalp,still have a patch on head now which hair wont grow through.
Sunday, 6 April 2014
epilepsy protection; going high tech
for those who arent regular readers,am life long tonic clonic and abscence epileptic-severely and sometimes status epilepticus though the TC seizures get worse around warmer months and settle down better during cooler months as the heat is a big stress causer of mine.
the social services/NHS learning [USA=intelectual] disability team had learned that there had been a number of seizures being missed by waking night staff because they were busy sleeping on the job or had their music ear phones in,so in one week they had arranged a visit from the epilepsy team with a special epilepsy sensor mat that goes under the mattress of the bed and detects seizures-there is a digital unit which is plugged in in the lounge so waking night staff can hear an alarm if it detects epilepsy activity,here is a photo of it on the bed-
am greatful to the LD team,one in particular who secretly fancies harold bishop from neighbours, for getting it sorted out so quickly as it is a big worry for self when have come out of seizures and no one is there to help as theyre busy in the lounge snoring or with their ear phones in.
the epilepsy mat and unit costs hundreds of pounds so am greatful for getting it on NHS.
am also been given a epilepsy sensor bracelet which does the same sort of thing as the matt,but theyre out of stock at the moment.
the social services/NHS learning [USA=intelectual] disability team had learned that there had been a number of seizures being missed by waking night staff because they were busy sleeping on the job or had their music ear phones in,so in one week they had arranged a visit from the epilepsy team with a special epilepsy sensor mat that goes under the mattress of the bed and detects seizures-there is a digital unit which is plugged in in the lounge so waking night staff can hear an alarm if it detects epilepsy activity,here is a photo of it on the bed-
am greatful to the LD team,one in particular who secretly fancies harold bishop from neighbours, for getting it sorted out so quickly as it is a big worry for self when have come out of seizures and no one is there to help as theyre busy in the lounge snoring or with their ear phones in.
the epilepsy mat and unit costs hundreds of pounds so am greatful for getting it on NHS.
am also been given a epilepsy sensor bracelet which does the same sort of thing as the matt,but theyre out of stock at the moment.
Thursday, 27 February 2014
special college is one step closer
went for a visit to the david lewis centre this week straight from visiting the chickens which is why am looking really dirty,was not bothered but the support staff was with [a certain madam from traffords learning disability team] acted like she was having a heart attack over it- http://www.davidlewis.org.uk/
its a special college for people who have complex intelectual disability with autism and epilepsy.
have had a tour and enrolled on their animal management course and will be doing two half days a week after a couple of trial runs.
the actual college is a huge campus;like the university campuses seen on american films, its spread across different buildings,its all private ground-they have their own roads leading up to it full of homes used by residential students of the college.
its pretty cool because am amongst many people who also wear a helmet on the course am doing.
its an hours drive from home but its a great day out,will be working with their chickens [yay], bearded dragons,snakes,rats,donkeys,ducks,hamsters etc and the course is also designed as therapy so its going to help in that way to.
one of the students there is an incredible chicken expert,this is why am so fed up of the attitudes towards those of us who have intelectual disability [known as learning disability in the UK],people think we arent able to have any skills or talents-we arent any different to them;we just have more limited mental capacities;in the same way some PCs have single core processors and why some have dual core or quad core processors,none are inferior;some just have more limitations than others.
its a special college for people who have complex intelectual disability with autism and epilepsy.
have had a tour and enrolled on their animal management course and will be doing two half days a week after a couple of trial runs.
the actual college is a huge campus;like the university campuses seen on american films, its spread across different buildings,its all private ground-they have their own roads leading up to it full of homes used by residential students of the college.
its pretty cool because am amongst many people who also wear a helmet on the course am doing.
its an hours drive from home but its a great day out,will be working with their chickens [yay], bearded dragons,snakes,rats,donkeys,ducks,hamsters etc and the course is also designed as therapy so its going to help in that way to.
one of the students there is an incredible chicken expert,this is why am so fed up of the attitudes towards those of us who have intelectual disability [known as learning disability in the UK],people think we arent able to have any skills or talents-we arent any different to them;we just have more limited mental capacities;in the same way some PCs have single core processors and why some have dual core or quad core processors,none are inferior;some just have more limitations than others.
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