Frustrated !

[WorriedMom]

I guess I really need to just vent here , but im also looking for some advice from others.

I was given my sons Heath Care Action Plan ( which is basically an OH GOD CALL 911 ) for his school. I am disapointed to see that the numerous hours I've spent on the phone and in person with the nurse, and the principal, seem to have gotten me no where. Ive taken in EVERY set of notes from the doc each time we visit with an updated meds list, i even go above and beyond to print up side effects for them, Because Ryan's seizures have gotten so much worse and these new episodes have reared their ugly heads, I went back in to talk to the nurse, the principal, his teacher and his class aide, The nurse decided there needed to be a new action plan drawn up , which i agreed. It was given to me to sign.

As I was reading it I realised how much of what I had said to them was in one ear and out the other. She attached some paper about what to do when a Grand Mal occurs, which is nice that she found that , but RYAN DOESNT HAVE THAT TYPE OF SEIZURE ! He never has , so although it is something that people should be aware of , it will not help in the general well being of my son in case of an emergency, Not one thing she wrote down for his emergency plan is/ was something to help him.

So here i am frustrated because I just spent the last hour writing everything I want in his emergency plan , and crossing out everything she wrote in hers, and attaching what i wrote , with a giant red X across her form for me to sign, nicely telling her i will sign it when she corrects it. Why is it that people treat him as if E is a contagious disease ?! It makes me so mad that a little listening on their part would save a whole lot of time , and she might even learn something ! I have really been considering doing a lecture for his school , to explain that Grand Mal are NOT the only type of seizure.



/end rant /

[RobinN]

Worried Mom.. I know how you feel. I understand your frustration, especially since you have spent time telling them already. You know though, I keep teaching my husband about the disorder too. I have learned that some people just can't wrap their mind around it. Too bad that you are speaking to the nurse and this is what you are experiencing. I try to teach people at the school as well about the disorder.

Grand mal isn't called that any more though... for some reason they have changed it to Tonic Clonic.... Why? who knows (maybe someone here can give a good reason).

[stringbean]

Worried Mom,
I sure hope you can get them to understand and realize what they need to do.

I also have had many problems with my daughters school, when she was in kindergarden, (she is in 3rd grade now) she started showing signs of absense seizures and once I talked to her teacher about the possibility that she was having these her teacher was great as far as understaning, and she watched her closely and let me know if my daughter showed any of the signs I explained to her.

Now, comes her first grade teacher, I literlly would have loved to have been able to just slap this teacher right in the mouth. At the first of school that year I told this teacher that Charlisa could possibly be having absence seizures and what she should do to check and watch out for them. I had taken her to a child neurologist and she couldn't say for sure that she was or wasn't having them. This teacher just seemed like she could care less if she was or not. I then went to see her again for many reasons, all she could do was put my baby down. When I handed her two different cards on stating about grand mals what to do and what to watch for the other about absence, partial and complex seizures and she said in a nasty tone of voice I know what a seizure is. And I am sure all she did when I left was throw them cards in the trash. Her first second grade teacher was great, her second second grade teacher, like her first grade teacher, now her 3rd teacher is wonderful.

Oh I can get going when I hear about such, I about how these schools are, luckily, Charlisa hasn't shown any signs of seizures for over a year now, but she does have ADHD and it can be very hard to get through a teachers mind, unless one of their child have Epilepsy or ADHD, about them and their effects on our children.

[Bernard]

You might also try contacting your local Epilepsy Foundation affilliate to see if they can be of assistance in working with the school.