Stupid EMTs

[BensalemAngler]

Pushy EMTs

My son Danny had another sz at school today and like always they called an ambulance. My wife sits out in her car int he parking lot during school just in case. Needless to say we are both afriad of leaving him anywhere and anyone.

So the ambulance comes and makes my wife feel like crap for not taking him to the hospital. This is the second time they did this. What is she supposed to do? I would go too if the emt's were making me feel like a bad parent.

Yesterday's sz was not like the rest but had aspects of past ones into one. So nothing new. He was only out for about a minute. I had to find coverage for my class (I am a teacher) then go to the hospital b/c I knew they were going to release them with in 2 hours and they had to get home.

All the emt's wanted to do was IV in case he had another, WHY she had the dyistat, it did not last longer than 5 minutes, he was a awake, groggy but coheirent. Haven't they ever seen a sz? I think I know when to go to the hospital but when the emts make you feel bad what are we to do?

I need to take this moment to be mad and upset so bear with me. WHY, he loves school. What 3 year old who have seen nothing but his father and mother since be was born would run away from them to get to school, and cry when he has to come home b/c he has so much fun there. His teachers makes comments you know we have 14 kids in class. Well you know what 13 opthers do not have sz.

I want to fish professonally but I can't. How can I drag them across the country when I can't even leave for work. I am tired of being brave I am tired of not being able to plan trips and outings, I am tired of being afraid to leave my house.

OK enough I will stop now. Thanks for listening.
Ron

 

[Bernard]

Many EMTs have lousy bedside manners. Have a look at this thread (start reading from post #8 onwards):

http://www.emsvillage.com/forums/messageview.cfm?catid=55&threadid=4857

 

[RobinN]

Okay this is one area that I am very familiar with.

My daughter has had the majority of her seizures at school. 911 has been called on quite a few, but she has had many lately, without much fanfare.
I suggest you speak to his doctor and come up with a plan that you both agree to. Ask for a letter from the doctor that states that 911 only needs to be called if the seizure lasts longer than 5 min, if it is status, or if it has been witnessed that your child has fallen in a way that a head trauma is likely. It should state clearly what the school needs to do in case of a a seizure.

I am friendly with the EMT's and they are required to take my daughter to ER, but as you know you can sign a release, where they have to inform you of the risks including death. I am not sure the frustration should be aimed at the EMT's. They are just doing their job. It is the legal system that is pushing them to make sure you are doing what is in the childs best interest. ( I just realized that laws could be different in different states. I am coming from what I know to be true in CA)

I am 2 min from my daughter's school, and the admin office is so helpful and they call me the minute anything occurs. I usually can reach the school before the ambulance, but if I don't, they are checking her vitals and I am reassured that she is okay.

Once they know what you are doing for your childs care, they can be quite compassionate. I am reassured that they will be there instantly for my daughter. Two have shared personal stories. They are even friendly to her when they see her around town. Perhaps your wife can try to strike up a cordial relationship with these guys. You know that a plate of cookies goes a long way, and when they are on the same page as you are, they know that you are managing the situation.

Unfortunately there are many parents that want it swept under the rug, and want to keep it a secret. They don't follow up on care, and these guys are required by law to bypass that type of situation.

Today is my day to volunteer in the health office at my daughters HS.

*I just reread your post, and I remember now this is most likely a preschool.
I am wondering if it is more the school that needs the encouragement and education. It sounds like they don't know enough about the disorder to feel in control of the situation. So they call 911 to give them a few more pair of hands to handle the situation. Have you been able to have a meeting with the school, to find out ways to support them? ... and ways they can support you.

I think the letter from the doctor would be your best protection. I do understand the frustration at not being able to let go. I do understand the fear as well. I love (and hate) caller ID, because I can take a deep breath when I see the schools number come up. My cell phone has also allowed the ties to stretch a bit longer.

 

[Birdbomb]

Robin is correct. The school needs to be educated. The trick is all in YOUR attitude. Witnessing a seizure is scary and if you don't understand whats going on it's worse. Maybe there is a support group in your area, a local EFA chapter, or an Epilepsy clinic at a nearby hospital where they can direct you with litature, handouts and first aid charts and maybe have someone come talk to the teachers and other classmates.

Children are very resiliant and take their cue from the adults in charge. If the teachers freak, then the other little kids will too, but if the teacher is TAUGHT how to handle the situation, the children will follow suit. Never assume professionals know how to hanlde seizure situations. I have come across medical people who didn't know their ass from a hole in the ground when it came to seizures!

Once you have the school trained, the EMT's will fall into place. They will not be called at every little seizure and only when medicaly necessary. I have a diabetic friend who is very brittle. About once a month his blood sugar drops to dangerous levels and he goes into a seizure like event and if I can't him to eat and he can't swallow, we call 911. They always want to transport him but he refuses. I told him if I cannot wake him and his level is below 20, he's going to the hospital. So far he has been awake enough to keep out of the ambulance. So out EMTs know he won't go willingly, he has to be unconsisious.

 

[BensalemAngler]

I have tried to educate the teachers but they seem to brush it off. Then make comments to other parents about hoping it does not happen b/c they would not know what to do.

They are all 3 yr olds in his class. Talking to them will not do much, talking tho thier parents would. But for now something there is triggering his sz so we will be removeing him from school.

I just need to get back to normalcy.

 

[brain]

Every area and location is different.
Some have stronger Advocacy and Awareness
than others - how unfortunate!

As for the Public School Systems, this
should be brought forth and manifested
to the School Board Systems and made
sure it is ENFORCED!

As for the Private School Systems, then
this should be brought forth to the School
Administrator Personnel & Principal & Director
(and Parish Priest Presiding if Catholic).
And it helps to obtain the information from
the Epilepsy Foundation
as they have information available.

Advocacy and Awareness is the key point
and resource.

As for the Fire Department - Head to the
City or County Hall - and provide them info.

As for the Ambulance Service - Head to
them and provide them the info.

By the way:

NOVEMBER IS...
EPILEPSY AWARENESS MONTH!


If you have a 911 Service available, there
IS an alternative route; in case you didn't
know. You can actually contact the office
and arrange/set up an alert system regarding
a specific individual (like I am set up) on the
database; where the medical information of
that individual is on the system. Another
option is having the Hospital Administration
Personnel do this on your behalf. If you have
a County System database where it also works
with Cities, they will also put in that info too,
including which Hospital that patient should be
directed to. This option is not available in all
areas but it's starting to pick up as more and
more are becoming computerized systems
and are able to have everything stored in the
computer database including emergency
contact info, allergies, Doctor's names, and
the last current meds (of that date and it
is marked subject to be changed) so it gives
Emergency Personnel advanced notice of who
they are dealing with and the type of patient
that they are dealing with and they are able
to radio the right Hospital who is already
familiar with such patient and can abide by
their instructions per se.

That's how they responded the last time when
they were here, with the orders of KEEP HER
AWAKE, GIVE HER NO MEDICATIONS, and other
instructions and then get me to the ER at this
Hospital ASAP. (I wanted to sleep, but the
danger of lapsing into coma/death was the
threat) Even when I was in the ER - they had
to keep me awake until it all passed, even when
I had seizures, it didn't matter, KEEP HER AWAKE
AND DO NOT LET HER SLEEP! But once it was
over with; then the conference went on as
what to do with me. I have a serious problem of
loosing consciousness. And because of this all
being on the database, the Medics and Law
Enforcement knows when they look me up.

The weirdest thing is - I have no memory of
any of this, absolutely none! Everyone has
to tell me what all happened. There could
have been more stuff that had happened,
but I wouldn't know or remember.

What's so scary is - they tell me I was talking,
for example, in the ER, but I have no idea what
I was talking about!

Was I coherent? Incoherent? I have no idea!


BUT ADVOCACY AND AWARENESS
IS THE KEY! YOU CAN BE THE PERSON
TO STEP UP TO THE PLATE AND BECOME
THAT VOICE!

 

[Catspaw]

Is he having sz about the same time of the day? What is he eating? And do you know that MSG can trigger seizures.

Just an idea, if everyone can help to track what your son is eating and drinking through the day and when the sz happens. It could just be food related.

 

[RobinN]

Yes keeping good records is important. However it can take up to 48 hrs to have food related seizures occur.

 

[brain]

Yes keeping good records is important. However it can take up to 48 hrs to have food related seizures occur.

Not true. I've had food-related seizures that
started within a half-hour to an hour after
consumption!

 

[RobinN]

Yes I should have said they can begin almost immediately, but can be a long as even two days. I haven't read that they can be longer than that, but I guess anything is possible. My only point is that it is hard to relate it to a particular food when it is one or two days later.

 

[Bernard]

A while back, we noticed a pattern in Stacy's diary/log that she would have a TC seizure roughly 24 hours after eating chocolate or anything with caffeine. There definitely can be a delayed effect IMO.

 

[RobinN]

Why does it always have to be chocolate? Why can't that silly substance get a break? Why can't it be peas or brussel sprouts?

There has been a link between magnesium deficiency and chocolate though.

 

[Bernard]

Well, there are other sources of magnesium. Chocolate contains caffeine, sugar and possibly dairy/milk.

 

[Birdbomb]

Why does it always have to be chocolate? Why can't that silly substance get a break? Why can't it be peas or brussel sprouts?

There has been a link between magnesium deficiency and chocolate though.

Never had a craving for peas or brussel sprouts, never ate myself sick on them either. It's got to be the stuff we enjoy, and indulge in. Murphey's Law or something in the same lines. ;-)

 

[tinasmom]

Education is the key for the schools. When I let the school know that Nicole has seizures, I was told that their protocol was to call an ambulance. I immediately told them that unless her seizure lasts for 5 minutes or she is injured they are not to call an ambulance. I got some forms from our local Epilepsy foundation and sat down with the school nurse and discussed what her seizures are like and what they need to do. I also insisted they all school staff be seizure trained which is offerred free from the foundation. The nurse assured me that this would happen. Unfortunately, at Nicole's parent conference I found out that training was not done. I set up a meeting with the principal as I was very upset. the meeting consisted of the principal, the nurse, the health services person from the district, my self, my husband and I had the Executive Director from the foundation with us. The meeting was not going well until the ED from the foundation started telling them statistics. They finally agreed to offer training to all teachers and non-professional staff. Nicole's teacher sent me a note that she found the training very informative. I am now working on getting the entire district of teachers here trained. I might have to go to the school board to get this done, but I have learned to keep fighting for what I believe in. Our foundation also works on training EMT's.

 

[RobinN]

Who do you contact within the Foundation to arrange this type of training?

 

[Zoe]

I have tried to educate the teachers but they seem to brush it off. Then make comments to other parents about hoping it does not happen b/c they would not know what to do.

They are all 3 yr olds in his class. Talking to them will not do much, talking tho thier parents would. But for now something there is triggering his sz so we will be removeing him from school.

I just need to get back to normalcy.

I know someone whose child's seizures were mostly happening at school. It was linked to the carpet and sensitivity to the lighting at the school. If the seizure frequency goes down when away from the school you may also want to look at the possibility of multiple chemical sensitivity.
http://web.tampabay.rr.com/lymecfs/kindling.htm

 

[RobinN]

Great suggestion Zoe.

 

[tinasmom]

Our program director at our local foundation does the training. There is also a program called HOPE (Helping Other People with Epilepsy) that educates people to train others. I am a HOPE mentor.

 

[RobinN]

I will check into that. Rebecca isn't too keen on me calling more attention to her than already has been.