Advice needed- how to reveal epilepsy to others

[Blondie47]

I have tough job to do today... call a mom who I do not know and tell her that my daughter has epilepsy.

My DD was invited to a slumber party - she is new to the group of friends and has not told them about her epilepsy yet. She is 13.

I need to inform the mom hosting the party. I have not had to do this informing thing yet - she was just diagnosed last October. Her seizures are under control and she will have to take her meds at the party. The plan for that is to set her phone alarm and text me when she takes them.

Worried- need help getting through this one!

 

[Bernard]

If you have worry or concern in your voice, the content won't matter so much. I would just be matter of fact about the need for the meds and what to do if she does have a seizure. If you can relate these things the same way you would talk about brushing teeth or a bed wetting problem, so much the better.

When people don't know anything about epilepsy, they take their cues from you. Don't communicate fear or anxiety because that will prejudice the jury (so to speak).

 

[dfwtexas]

I got diagnosed with seizures last year at age 47. I am still in process of explaining to people about it. I know most people freak out when I tell them. I have simple and complex partials but it seems everyone assumes grand mal when they hear seizures. I would tell her that her seizures are controlled but make her aware of any triggers she has and any symptoms (depending on her seizure type) that they should be aware of. It requires education on their part and be sure to ask if she has any questions. More important, explain she is a little girl that deserve to have same experiences that others have, but she needs some monitering to make sure she is ok.

 

[Blondie47]

I did it!

Bernard - Thanks for the pep talk- followed your advice and it went very smoothly. The mom turns out to be a special ed teacher and is trained in seizure first aid.....

 

[epileric]

The mom turns out to be a special ed teacher and is trained in seizure first aid.....

That is so cool :tup:

 

[Bernard]

... it went very smoothly. The mom turns out to be a special ed teacher and is trained in seizure first aid.....

:woot: I expect your daughter is going to have a great time.

 

[RobinN]

Even though my daughter is older, she is still a minor. I always tell others that she has a seizure disorder, and here is my phone #. Some ask what to do just in case, and I give them first aid info.

It is a fact, and it must be shared when necessary. If we as parents are afraid to discuss it, then we shouldn't shouldn't be surprised when others aren't educated on the subject.

I bet your daughter will have a wonderful time. I am sure you have found yourself a new support system as well.

 

[Bri_Christine]

Even though my daughter is older, she is still a minor. I always tell others that she has a seizure disorder, and here is my phone #. Some ask what to do just in case, and I give them first aid info.

It is a fact, and it must be shared when necessary. If we as parents are afraid to discuss it, then we shouldn't shouldn't be surprised when others aren't educated on the subject.

I bet your daughter will have a wonderful time. I am sure you have found yourself a new support system as well.

Something I found really helpful, was that one of the first times I spoke with the guy I am dating now, he immediately told me about his epilepsy and after a month of dating, his parents took me aside and taught me the first aid and what to do and what happens. It helped a lot that they did that, even though I did the reasearch on my own.