Epilepsy......did you know

[jiminyC_fan]

November is National Epilepsy Month. Did you know that.........
Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

 

[bonoriffic]

November is National Epilepsy Month. Did you know that.........

I did know that. But only because I saw the poster the other day at the hospital as my 1 year old had an EEG for recent seizures. He had 2 yesterday, and none last week while we were in Disney. Maybe Disney is the happiest place on Earth.

 

[jiminyC_fan]

My dd outgrew it but had over 100 a day. Now her son has epilepsy and was having over a 100 per day. He was put on the Ketogenic Diet. That helped somewhat and now has the VNS. My brother has epilepsy as well.

 

[C.Ann]

I know - but only because someone very close to me has had it for many, many years.. Luckily it has been well controlled with Tegretol - not even a "minor" (blank stare) seizure in 14 years..

 

[jiminyC_fan]

I know - but only because someone very close to me has had it for many, many years.. Luckily it has been well controlled with Tegretol - not even a "minor" (blank stare) seizure in 14 years..

Wonderful! Something to celebrate!

We celebrated after our daughter was off meds for 5 years. We are now hoping to celebrate our grandson in a few years.

 

[krcit]

I don't think epilepsy gets enough publicity...you know what I mean? The more something is talked about then the more money is raised to do research to find cures. I don't know much about it all. I had a friend who passed away from a seizure in her sleep and that was the first I had heard that she had epilepsy. It's unfortunate that there seems to still be a stigma attached to it. We had a scare with my son a few years ago and he had to have a few tests and a hospital stay and during that I found that there is a wonderful website where the people were so helpful to me while we waited for results, one woman even sent him bear with the electrodes on so he would have it in the hospital Happily, everything worked out and my ds didn't have epilepsy but the experience gave me a new appreciation for the disease and what families go through

 

[jiminyC_fan]

krcit, thanks for the hugs. So many pass away during their sleep when having a seizure. The statistics are staggering. We know of a precious 18 month old that passed away a little over a year ago. Most of my grandson's seizures are at night so it really concerns us all.

Unfortunately Epilepsy is swept under the carpet and I think due to the stigma. It's sad that most people don't know the severity of it. I can't quote it exactly but there are more deaths due to epilepsy than breast cancer. How many people realize that?

 

[Agri]

I agree with that there is a need for more awareness. I was diagnosed in 8th grade after many years of being labeled a "daydreamer". I don't fall down twitching, so of course, people I've dealt with don't believe I actually have seizures. One of my teachers even told my mom "She doesn't have seizures, she just needs to pay attention more." Seriously!

My pediatric neurologist didn't want to medicate me in case I grew out of it. He also prescribed medicines that lower the threshold for seizures. When I was older, I had to medicated in order to drive. My pediatric neurologist later ran for political office and did NOT get my vote.

 

[HOGFAN]

Unfortunately, I do as I have epilepsy. Thankfully it is mostly controlled by Lamictal. I do okay as long as I dont get too stressed.

 

[Snoopymom]

Thanks for posting this again this year!!!

If you don't think the stigma exists...in April I saw a sign along a highway that said Epilepsy is caused by Demons. I contacted the Georgia Epilepsy Foundation and they were able to convince the crazy pastor who owned the property and the sign to take it down.

Also just to reiterate what Agri said about how seizures present themselves in so many different ways. During the last seizure my son had, he was mumbling the ABC's. If he had been a toddler and not 9 yrs old, I might not have noticed. He also gets dizzy and throws up. When he was younger, he had spells of irrational fear, extreme mood swings and falling down.

There were many times in first and second grade before dx and we found the right medication and dose that ds was written up or sent to the opportunity room for not listening, not paying attention, being defiant, not remembering things, the falling down was mistaken for goofing around, faking the nausea, you name it. It was a rough time that could have been prevented by AWARENESS, me, dh, doctors, extended family, teachers, the school nurse, administrators, everyone.

Also 30-40% of kids with Epilepsy have ADHD compared to 5% in the general population http://www.epilepsyfoundation.org/epilepsyusa/magazine/Issue4-2008/ADHD.cfm

Whew, thanks so much for listening and becoming more aware!!!

I pulled this from the GA Epilepsy Foundation Site, kind of gives you some perspective.

Did you know that 1 in 100 people in Georgia have epilepsy?

1 in 100 means

Several students at your elementary, middle or high school

300 people at the Varsity on any given day

220 people at a sold out concert, Hawks, Thrashers or NCAA tournament game

2-10 people at your church service this weekend

12 persons attending the Prater’s Mill Country Fair in Dalton

5000 people in Savannah for the St Patrick’s Day celebrations

2 people on your MARTA train at a given time

928 people in Sanford Stadium in Athens on a football Saturday

6000 people visiting Zoo Atlanta on an annual basis (does not include the animals living at the zoo who may have seizures)

710 fans at the Georgia Dome for a Falcons home game

50 persons attending the Masters in Augusta on a given day

400 people attending the Cherry Blossom Festival in Macon

Someone you know

 

[krcit]

Snoopymom, a teacher noticing my ds staring into space and mentioning at his CSE meeting is what started all his testing. We took him to a nuerologist who tried to induce a seizure by having him blow on a tissue for a full minute. She wasn't sure if he had a absence seizure so she sent us for an EEG and that showed slowing on one side of his brain so we then had to have a video EEG with an overnigth hospital stay and finally an MRI. Everything was clear but I'm still thankful that the teacher voiced her concerns. It is such a shame that there is a stigma attached to epilepsy. We need awareness not shame. I hope your ds is doing well.

 

[FlightlessDuck]

A new biography about Emily Dickinson speculates she might have had epilepsy.

http://www.npr.org/templates/story/story.php?storyId=127906938

 

[FergieTCat]

krcit, thanks for the hugs. So many pass away during their sleep when having a seizure. The statistics are staggering. We know of a precious 18 month old that passed away a little over a year ago. Most of my grandson's seizures are at night so it really concerns us all.

Unfortunately Epilepsy is swept under the carpet and I think due to the stigma. It's sad that most people don't know the severity of it. I can't quote it exactly but there are more deaths due to epilepsy than breast cancer. How many people realize that?

I can attest to this.

My 28 year old nephew suffered from adult onset epilepsy. Unfortunately, he was never truly able to get his seizures under control. He didn't have a seizure for 5 months; and yet he passed away in February after having a seizure alone in his apartment. He was on the phone with his brother when he had the seizure, but unfortunately, EMT didn't get there in time to save him.

With that, it's also a myth that you cannot develop epilepsy later in life.

 

[jiminyC_fan]

With that, it's also a myth that you cannot develop epilepsy later in life.

That is so true. My brother got it at 50. He recently separated from his wife and I am so nervous that it could happen to him while alone.

Our first experience was that our daughter made a funny noise in her bed one night. We found her blue and of course unresponsive. EMT's came out, transported her to the emergency room as the sheriff's dept chaplain talked with us. We all thought she was gone. She was fine once she hit the hospital and they sent her HOME that night because all her vital signs were good. It happened again but at the table a couple of weeks later. Once again she was transported and once again they said she's fine, take her home. I told them absolutely not, that they needed to find out what was causing these "breathing problems". A pediatric neurologist just happened to walk by and heard the conversation and said it sounded like seizures. If it wasn't for him walking by at that moment it probably would have taken several more trips for a diagnosisl It's so frustrating trying to convince others that there IS a problem.

Snoopymom, unbelievable statistics and yet it doesn't get the coverage that it should. WHY?

If any of you would like an epilepsy awareness ribbon that you can wear on a shirt or jacket. I recently had some printed. PM me with your address and I will send you one.

 

[jiminyC_fan]

These statistics came from FB. The first one is from the Epilepsy Foundation of Colorado and the second one is from Turn the White House Purple on FB.

The risk of sudden death is 24 times greater in someone with epilepsy. It's time people are aware...please repost.

Total research funding per patient in 2008
Parkinson's $2000-$2500
Alzheimer's $900-$1200
Autism $620-$760
Epilepsy $500-$590

I'm saying, it's time for a change.

 

[KPeterso]

My beloved niece has Epilepsy. She is 12 and just the light of my life. They have not been able to get her seizures well controlled. She has mobility issues too, so if the medication dose is too high her balance is really messed up and leads to her falling down. The dose too low she has more seizures. She also has more (and worse ones) when she is tired or under great stress. I am constantly worrying about her, and know she will need lifelong care. Good thing she has 2 aunties that will do anything for her, and 2 others that are just there.

Kristin

 

[jiminyC_fan]

Kristin, I'm proud of you!! With my daughter (the first in the family) we found that no one was there for us. With my grandson and brother there is more understanding and we stick like glue. In todays world we are always there for each other.

It's funny. There is more knowledge on epilepsy than 28 years ago with my daughter. Back then we were told it wasn't hereditary. We now know that's not true. The keto diet wasn't used as frequent and the VNS was not around. I complain that there isn't enough research but the research that they have done has helped immensely.

 

[Eeyore5]

I am an Early Childhood Special Education Teacher working with infants and toddlers. I have had many students over the years with Epilepsy. I have also had to tell a few parents that I suspected their child was having absence or partial seizures. Usually people are surprised that "staring spells" or small repetitive movements need to be checked out. Each time I have brought it up for a family, I was right. If you ever suspect a child you know is having a seizure, get them to a pediatric neurologist. Better to rule it out then miss it.

 

[136368]

That's quite a heavy statistic. My heart goes out to them.