|
Post by Thomas Way on Feb 19, 2010 0:01:13 GMT -5
I'm trying to put together an information file for Patrick that can be carried around with him at all times in case of an emergency. What kind of things do you think I should include? I've just realised that so much of what we know is stored up in our heads... but Pat does quite a lot of things without us present now (toddlers class, speech therapy) and if something happened then, or if we were away on holiday, portable information would be important. I'm sure the NHS in the UK have a pre-prepared format for this. Any ideas? I guess in future this kind of stuff will all be on a flashdisk necklace or bracelet that can be read by mobile hospital computers or even mobile phones
|
|
|
Post by tracymccarroll on Feb 20, 2010 13:29:09 GMT -5
Hi Tom, the nhs has no pre-prepared format. We keep a file with info about ahc, how it affects joanne, what type of attacks she has, care plans, what meds she has and when to give them, any hospital or doc letters. Anything really that is relevent to your child.
|
|
|
Post by Thomas Way on Feb 20, 2010 19:05:37 GMT -5
I was wondering if it's important to try and do a one page summary with all the important stuff for an emergency... like you say, the essentials like which meds to give and what to look out for in terms of complications (breathing difficulties etc.)
We had a terrible experience once during the time we thought Pat had epilepsy. He had a regular hemi attack that didn't respond to diazepam (we thought these were seizures back then as he has severe head twisting and eye twisting). The attack was going on and on so we rushed him to the international hospital near us where they admitted him. We thought he was is status epilepticus.
Unfortunately the only child neurologist in town was away and although we knew what meds he was supposed to receive in such an event, no one in hospital would do anything without consulting the neurologist first. What was worse, they wouldn't even let us give him any diazepam as he'd already been admitted (hospital policy) so he went about six hours with sever dystonic neck twisting and bouts of screaming before he finally dropped off to sleep on his own accord.
Although we didn't know much at the time, I feel that if we'd had some procedure on paper with a doctor's signature at the bottom we could have avoided the whole episode.
|
|
|
Post by tracymccarroll on Feb 21, 2010 17:04:25 GMT -5
That is so bad that they wouldnt give him anything, i was allowed by a hospital doctor in casualty to give midazolam because he couldnt, we took her meds with us and the file so doctor had looked at the paper written by proffessor neville. i think its a good idea if you take something signed by your doc if he works at the same hospital, i dont think they can stop you administering his meds if you have them with you, especially if you have his care plan with you that shows what emergency meds he has to have during an attack.
|
|