re: burning butt vent:

[Guest guest]

Thanks for your (and others who have responded also, don't mean to leave anyone

out) reply to my " butt burnt vent " . It felt good to let it out. It really

upset me, and probably more than it should have. As many different medical

issues as I and my two sons have, it's really amazing that I've only had that

experience once (that I know of). Yes, I have typed up a folder (one page just

won't cover all our medical issues) for each of us, and even gave the school a

copy. Unfortunately, when 911 has had to be called (and this has happened

multiple times for various reasons for the 3 of us), they ARE handed that folder

for whichever of the 3 of us they are coming for. It includes all our medical

diagnoses, current medications and dosages, drug allergies, asthma action plan,

most current pulmonary functioning test results, emergency contact #'s, a list

of all drs. we see and their #'s, and even very reliable websites which can be

accessed for more information (especially on our Ehlers-Danlos Syndrome). I

even now have a truly wonderfully prepared and researched CD ROM on EDS which

includes the types, current description of each type, characteristics and

potential medical problems, etc. The trouble that we have here is that our

local EMT's either honestly don't have a clue or don't want one. When my son,

, had a tonic clonic seizure and convulsive syncope at school in Oct. 2003

(and several specialists now agree that he may also have suffered a mild heart

attack which did no permanent damage, thank God) which was witnessed by MANY

people, including the school RN and Asst. Principal (who later said to me,

" , I honestly was afraid was dying right in front of me. I've seen

his body do lots of strange and bad things, but this was the worst I've ever

seen...and that includes when he had the heat stroke several years ago during

band practice! I was just praying we weren't about to lose him! " ), the school

RN did hand the EMT's 's folder, and Isaac was literally beating on the

back doors of the ambulance to try to explain all of 's health problems.

The EMT's never looked at the folder, and truly disregarded it. It was returned

to the school RN, who told me about their lack of interest/lack of

listening/lack of competency with great frustration and disgust. I guess the

moral of this story is that even if you have your medical information readily

accessible and/or have a MedicAlert tag, there is still no guarantee that the

EMT's or ER staff will pay any attention to that information. If we lived in a

larger town with a larger hospital (like Baylor in Dallas, for example), I'm

sure it would be a different story. But even then, if you or a loved one is

unable to speak for themselves (and sometimes even when you/they are), the EMT's

and ER staff you/they encounter can and will interpret things in their own

way...and not necessarily in a way that is correct or an accurate assessment of

a person's problem/s. Sad, frustrating, maddening...but true. I have seriously

considered writing or talking to the administrator of our local hospital about

what I discovered in my medical records, but honestly figured that I would then

be labeled as " difficult " . That would be just like them to do so. Not my

family dr. or any other specialist I/my boys see, mind you...but the EMT's and

ER staff.

Love,

~LoneStarRose~

(~~)

[Guest guest]

Thanks for your (and others who have responded also, don't mean to leave anyone

out) reply to my " butt burnt vent " . It felt good to let it out. It really

upset me, and probably more than it should have. As many different medical

issues as I and my two sons have, it's really amazing that I've only had that

experience once (that I know of). Yes, I have typed up a folder (one page just

won't cover all our medical issues) for each of us, and even gave the school a

copy. Unfortunately, when 911 has had to be called (and this has happened

multiple times for various reasons for the 3 of us), they ARE handed that folder

for whichever of the 3 of us they are coming for. It includes all our medical

diagnoses, current medications and dosages, drug allergies, asthma action plan,

most current pulmonary functioning test results, emergency contact #'s, a list

of all drs. we see and their #'s, and even very reliable websites which can be

accessed for more information (especially on our Ehlers-Danlos Syndrome). I

even now have a truly wonderfully prepared and researched CD ROM on EDS which

includes the types, current description of each type, characteristics and

potential medical problems, etc. The trouble that we have here is that our

local EMT's either honestly don't have a clue or don't want one. When my son,

, had a tonic clonic seizure and convulsive syncope at school in Oct. 2003

(and several specialists now agree that he may also have suffered a mild heart

attack which did no permanent damage, thank God) which was witnessed by MANY

people, including the school RN and Asst. Principal (who later said to me,

" , I honestly was afraid was dying right in front of me. I've seen

his body do lots of strange and bad things, but this was the worst I've ever

seen...and that includes when he had the heat stroke several years ago during

band practice! I was just praying we weren't about to lose him! " ), the school

RN did hand the EMT's 's folder, and Isaac was literally beating on the

back doors of the ambulance to try to explain all of 's health problems.

The EMT's never looked at the folder, and truly disregarded it. It was returned

to the school RN, who told me about their lack of interest/lack of

listening/lack of competency with great frustration and disgust. I guess the

moral of this story is that even if you have your medical information readily

accessible and/or have a MedicAlert tag, there is still no guarantee that the

EMT's or ER staff will pay any attention to that information. If we lived in a

larger town with a larger hospital (like Baylor in Dallas, for example), I'm

sure it would be a different story. But even then, if you or a loved one is

unable to speak for themselves (and sometimes even when you/they are), the EMT's

and ER staff you/they encounter can and will interpret things in their own

way...and not necessarily in a way that is correct or an accurate assessment of

a person's problem/s. Sad, frustrating, maddening...but true. I have seriously

considered writing or talking to the administrator of our local hospital about

what I discovered in my medical records, but honestly figured that I would then

be labeled as " difficult " . That would be just like them to do so. Not my

family dr. or any other specialist I/my boys see, mind you...but the EMT's and

ER staff.

Love,

~LoneStarRose~

(~~)