Who do you tell?

[RockerMama]

About your child's(or your own) epilepsy? Other than the normal school and family.

Our grocery store has a "play center" that my 6 year old goes into for one hour while we shop. I am planning on telling them next time she goes in. But I am worried that based on that they will say she can't go in, which will break her heart. Her medicine is REALLY controlling everything, which "confirms" the epilepsy.

 

[Loopy Lou]

I think that the child care is one group that really should know about it. Just in case. There should be no reason for them to exclude her from the group. I know that over here everyone who works with children or in any kind of care should be trained in first aid because of the various things that can crop up, but i'm not sure what the law is where you live.

 

[RockerMama]

I think that the child care is one group that really should know about it. Just in case. There should be no reason for them to exclude her from the group. I know that over here everyone who works with children or in any kind of care should be trained in first aid because of the various things that can crop up, but i'm not sure what the law is where you live.

I am planning on it. It isn't a real child care place. I sign my daughter in, they give her and I a wristband with matching numbers, and she plays with toys there for an hour until i am done shopping. They have a lot of regulations as far as illness, potty training, etc etc etc, but I am not sure about conditions like this. I just worry since there are multiple kids in, they would say they aren't able to have her in there in the event something happens.

 

[qtowngirl]

I tell almost no one.
Parents, a few close friends, a few close family members (grandma and aunt)... and that's about it.
No one in my bf's family and no one I work with. People talk too much, question too much, and I really do not like being the center of attention.
I'm wondering however how I would get around that with half my hair shaved off and staples in my head =( Guess at some point it'll have to come out.

 

[RockerMama]

I tell almost no one.
Parents, a few close friends, a few close family members (grandma and aunt)... and that's about it.
No one in my bf's family and no one I work with. People talk too much, question too much, and I really do not like being the center of attention.
I'm wondering however how I would get around that with half my hair shaved off and staples in my head =( Guess at some point it'll have to come out.

Are you having surgery?

 

[knothing]

For your child it comes down to one question. Do you feel comfortable that she will receiver the proper care if a seizure does occur? In addition take into account how long it will take you to get to her. I have kids and if under control I would lean toward not telling them because from an adult perspective people take it the wrong way and if anything are too protective.
For myself I tell people and it prevents stupid actions on their end when a seizure happens. Unlike my kids I can tell when people put the kid gloves on.

 

[qtowngirl]

Are you having surgery?

That's what my epileptologist is going for. I've only been going to the clinic for 7 months and am on the list for the video eeg unit, but with recent confirmation of hippocampal sclerosis that's pretty much where it's at. No other way around sclerosis but removal.
At this point my hippocampus on the left is shrinking, though minor, she sees it as considerable enough to get going.
I'm so glad the wait list is long because I need a long time to even accept the fact that surgery is the only option. For now we've doubled meds with fingers crossed.

 

[Cint]

I tell almost no one.
Parents, a few close friends, a few close family members (grandma and aunt)... and that's about it.
No one in my bf's family and no one I work with. People talk too much, question too much, and I really do not like being the center of attention.
I'm wondering however how I would get around that with half my hair shaved off and staples in my head =( Guess at some point it'll have to come out.

I had the same attitude when I was initially diagnosed with epilepsy. But when the CP seizures increased as well as the TC's, I had no choice but to tell everyone who knew me. I also had to tell them not to call 911 unless the seizure lasted more than 5 minutes or I was seriously injured. And several times the seizure did last more than 5 minutes. And after it was all over, people in the small town would whisper and look. I don't like being the center of attention, either. No choice when nature takes over. I also had my head shaved and the staples in my head after the lobectomy, and people stared even more.

 

[Kaitybugsmom]

Our neighbors know as they are part of our seizure emergency plan. If Kait has a seizure the youngest boy goes to a specific neighbors house to inform them, if they are not home he goes to the next house in the list while the oldest boy calls the numbers in order on the emergency list. The neighbors respond for comfort for the boys and to make sure that 911 gets called if needed before mom or dad show up. We tell anybody and everybody that may need to make important decisions when we are not with Kait. When we start the talk she *groans* and rolls her eyes with a smile on her face like "oh man not again" but in the end she knows its because we love her and just want to make sure she is safe.

 

[qtowngirl]

I had the same attitude when I was initially diagnosed with epilepsy. But when the CP seizures increased as well as the TC's, I had no choice but to tell everyone who knew me. I also had to tell them not to call 911 unless the seizure lasted more than 5 minutes or I was seriously injured. And several times the seizure did last more than 5 minutes. And after it was all over, people in the small town would whisper and look. I don't like being the center of attention, either. No choice when nature takes over. I also had my head shaved and the staples in my head after the lobectomy, and people stared even more.

Uggghhh. I work in the public, don't know if I could do it. I hate this shit.

(((BIG HUGS))) to you though, I've read a lot of your posts and know you've been through A LOT. Hope I can be so strong one day.

 

[RockerMama]

For your child it comes down to one question. Do you feel comfortable that she will receiver the proper care if a seizure does occur? In addition take into account how long it will take you to get to her. I have kids and if under control I would lean toward not telling them because from an adult perspective people take it the wrong way and if anything are too protective.
For myself I tell people and it prevents stupid actions on their end when a seizure happens. Unlike my kids I can tell when people put the kid gloves on.

As of right now, her seizures are almost completely sensory related. Visual auras she is aware aren't real, and changes in sensation in her hands. I am still researching and trying to understand more, so I am not sure if the seizures could progress to a different kind. That was why I was curious who it is necessary to tell. All of her seizure episodes are gone now that her medicine was upped. I made sure to tell the school, as well as have her neurologist fax them info, specifically about symptoms of her seizures, and if her medicine is too high.

I am sure when she starts TBall and Soccer this spring, I will have an interesting conversation with her coaches about her Auditory Processing and her Epilepsy, because it is a physical activity. If it were just her epilepsy, I don't think I would make as big of a deal since I will be at every practice/game 100%. But since I do have to tell them about her auditory disorder, I figured I might as well get it all out.

 

[RockerMama]

That's what my epileptologist is going for. I've only been going to the clinic for 7 months and am on the list for the video eeg unit, but with recent confirmation of hippocampal sclerosis that's pretty much where it's at. No other way around sclerosis but removal.
At this point my hippocampus on the left is shrinking, though minor, she sees it as considerable enough to get going.
I'm so glad the wait list is long because I need a long time to even accept the fact that surgery is the only option. For now we've doubled meds with fingers crossed.

Oh, I am so sorry.

 

[RockerMama]

I had the same attitude when I was initially diagnosed with epilepsy. But when the CP seizures increased as well as the TC's, I had no choice but to tell everyone who knew me. I also had to tell them not to call 911 unless the seizure lasted more than 5 minutes or I was seriously injured. And several times the seizure did last more than 5 minutes. And after it was all over, people in the small town would whisper and look. I don't like being the center of attention, either. No choice when nature takes over. I also had my head shaved and the staples in my head after the lobectomy, and people stared even more.

I am still super new to all of this. What is a lobectomy?

 

[Cint]

I am still super new to all of this. What is a lobectomy?

It is brain surgery, removal of part of the temporal lobe of the brain. For me, it was the left temporal lobe.

 

[RockerMama]

It is brain surgery, removal of part of the temporal lobe of the brain. For me, it was the left temporal lobe.

Eek, that is so scary.

 

[travel bug]

As of right now, her seizures are almost completely sensory related. Visual auras she is aware aren't real, and changes in sensation in her hands. I am still researching and trying to understand more, so I am not sure if the seizures could progress to a different kind. That was why I was curious who it is necessary to tell. All of her seizure episodes are gone now that her medicine was upped. I made sure to tell the school, as well as have her neurologist fax them info, specifically about symptoms of her seizures, and if her medicine is too high.

I am sure when she starts TBall and Soccer this spring, I will have an interesting conversation with her coaches about her Auditory Processing and her Epilepsy, because it is a physical activity. If it were just her epilepsy, I don't think I would make as big of a deal since I will be at every practice/game 100%. But since I do have to tell them about her auditory disorder, I figured I might as well get it all out.

Hi RockerMama,

I'm glad to hear that you seem to have an answer, even though it may not be the answer one would want, but it's great that the meds are helping your daughter. It's especially good to hear that she is doing well enough to play sports. Yay! Good luck to her

 

[qtowngirl]

Oh, I am so sorry.

Thank you RockerMama. It sounds scary I know, I cry all the time. Like I say if it does come right down to it I can only hope to be as strong as Cint. Been through it all and still going!!
The possible surgery is another reason why I tell hardly anyone about the e. Too huge, too hard for anyone to understand and as my support system is pretty small, I really prefer leaving the house every day knowing wherever I go I just look like a regular person doing her thing. There is something to be said for anonymity - and I'll take it as long as I can.

 

[Chaz1]

My opinion, tell anyone you will leave to care for your child. For both thier and your childs well being.

Mandatory for safety and how would you forgive yourself if something goes wrong.

Let’s talk about it....

http://www.talkaboutit.org/

 

[gigi]

in the closet

Very few people know I have E. If they do, say like my family, no one talks about it or ask me how I am. One of those Taboo subjects, like drug addiction/alcoholism. "So Uncle Larry how's that heroin addiction goin' for ya?!" Casual conversation does not involve the above. Where I work out at, one of the people there knows and I feel like I am being watched sometimes. That fuels my natural paranoia that accompanies my middle age and weird brain. I had a seizure one time years ago on a vacation, and the emergency room doc. talked to me like I was a criminal/hard of hearing. Especially when she asked if I had done any illegal drugs, THAT made me angry. I did tell someone recently, and it was a great risk, as it turned out her daughter has had seizures. I felt so relieved to bond with someone in person about my E., and that I was able to give her advice. Made my day!! I feel like I walk around with a secret, that maybe I should just reveal to everyone, then it would explain why I am anti-social, slow, bad memory and all the other fun things that go with my E.! :bigsmile:

 

[Kaitybugsmom]

Especially when she asked if I had done any illegal drugs, THAT made me angry.

When I arrived at the ER after our daughter had her seizure, the nurse and Dr. pulled me to the side and I could tell they werent exactly sure how to broach whatever subject they needed to spill. They finally got it out that they were going to need to do a blood draw and UA to find out if she had been taking anything (drugs). It didnt bother me in the slightest. However, this was her first seizure and I knew that they had to rule out anything and everything that could possibly cause a seizure.