Tiki Barber: Epilepsy in the Family

Mom, Roanoke, VA — Thu, 13 Dec 2007 15:27:32 GMT

Thank you so much for being willing to talk about this. We need more people to understand epilepsy. As a mother of a child with epilepsy, thank you.

Tiki Barber: Epilepsy in the Family

Michael Korba, Smithfield, RI — Thu, 13 Dec 2007 15:34:03 GMT

Dr. Snyderman-

I was very interested in the discussion of epileptic conditions. Being epileptic myself, I have had little information (other than from my Dr.) about the "disease". But your patients all seem to be child-onset in nature. I had my first "recorded" seizure when I was driving my car at the age of 49. Is there any adult-onset epilepsy that may explain my "late-bloomer" situation? (It is very ironic, but I am a type-1, child-onset diabetic, diagnosed when I was 15.)Where can I obtain more information? Also, say "hi" to Matt for me (we met in 1984 in RI).

Tiki Barber: Epilepsy in the Family

Tammie Vallejo Aransas Pass Texas — Thu, 13 Dec 2007 15:34:24 GMT

I have a son who didnt have any seizures until he turned 19,we been through many doctors and they cant seem to find any signs of what is causing it. He was told it was all in his mind , but I am there when he has his seizures and these are not made up,recently he was taking a shower and he felt like something was wrong he tried to get out of the shower,but didnt have time,Me and his father broke opened the door he was in a full blown seizure,I know this isnt in his mind,he loses memory ,he passes out Ijust feel like I am at the in of my rope. If there is anything any one knows please share it with me.

Tiki Barber: Epilepsy in the Family

Linda Partridge, Houston, Tx. — Thu, 13 Dec 2007 15:39:11 GMT

You should be sure to remind people that at no time should you leave a person in seizure attack alone in or near water due to drowning possibility. And drowning can happen in very little water.

Seizures come in all types. I've had gran mal and am now in complex partial seizure types. Drugs for seizures are expensive and some are almost as dazing as the seizures themselves.

It was eluded to, but not stressed enough, that epileptics are not retarded. This happens to brilliant people as well as any other level of intelligence. College graduates with wonderful careers can be affected, some slightly.

Life with complex partials, from my viewpoint as a sufferer, is limiting. I no longer drive, am scared to be in public with my grandchildren for fear of losing them, and wonder if one day I'll find myself lost. My husband has delt with this for years and it's only getting worse.

Some of the drugs are horrible. Tegretol gave me drug induced Lupus; depakote made me nervous, sick and upset; another drug caused me to lose the ability to add, spell and keep from crying. It's always an experiment for epileptics to find the right treatment, if ever.

Young people, epilepsy is not a reason to stop living. It's just a thing we must deal with, making us stronger. Keep struggling. One day you may be the person to find the cure or treatment that really works.

Tiki Barber: Epilepsy in the Family

Mary Metzger, Cheektowaga, New York — Thu, 13 Dec 2007 15:48:04 GMT

I was so glad to hear your report on Epilepsy this morning. I too have a child who had a seizure disorder that she outgrew. My youngest daughter had her first seizure January 1st 1999, she was 22 months old and I am very happy and lucky to say that she outgrew this disorder two years later.

My daughter had 7 seizures within this period of time. We went through all the testing, CT Scan, EEGs, and MRI. My daughter’s seizures were considered “Seizures with Illness”. They were not true Febrile seizures, because her temperature was never high, only 100 degrees. Both my husband and I had seizures as children so unfortunately our children were predisposed. Our older daughter never had a seizure though. I consider us to be very lucky, because there is so many parents out there whose children have not outgrown their Seizures.

I have researched Epilepsy for my own personal knowledge and I am a donor and advocate for the Epilepsy Foundation. I hope to help to take the stigma away from Epilepsy. Knowledge is power and the more we spread the word the better understanding everyone will have.

In our house we celebrate the anniversary of our daughter’s last seizure. She knows and can remember some of her hospital and ambulance experiences. She can now spread the word to make others aware of the truth not the stigma.

Tiki Barber: Epilepsy in the Family

Bernadette Ward , Boise Idaho — Thu, 13 Dec 2007 15:48:37 GMT

Watching the segment on Epilepsy this morning brought back many terrifying memories for me. The segment was presented from the point of view of children having epilepsy, it probably should have included the perspective of being a child with a parent who has epilepsy. I spent many hours of my childhood wondering if I was going to come home from school and find my mother dead at the bottom of the stairs or having swallowed her tongue, the house burned down,or my baby brother or sister dead because she had dropped then during a seizure, not to mention the social stigma that was attached to it. Our child hood was totally traumatic and terrifying.She suffered from two types of uncontrollable seizures and back then they were called grand and petite malls.Just wanted to share another aspect of Epilepsy that is often considered.

Tiki Barber: Epilepsy in the Family

Mom, San Diego, CA — Thu, 13 Dec 2007 16:03:01 GMT

Thank you so much for talking about your child's epilepsy. My child has suffered from uncontrolled seizures for 12-years now and we feel so hopeless. To add insult to injury, we have no idea why she has seizures. Thank you for your willingness to raise awareness about this disorder that can be so devastating.

Tiki Barber: Epilepsy in the Family

Nicole; ND — Thu, 13 Dec 2007 16:04:58 GMT

Hi! I have been epileptic since I was approx. 10 yrs old. Although I didn't know this later, I had spinal meningitis and almost died. The closest small town hospital(40 min away)told my dad there was NOTHING they could do for me so he drove to the next closest city, 100mi. away. I went thru various medicine at first, that changed thru my Puberty years. I have absent seizures or petit mal seizures. I blank out for a cpl sec or a min. The docs said I may grow out of them but never did. I guess since I quit breathing, I have to be thankful it was not worse. My life has had it's ups and downs as I was teased in junior high/hs as being retarded. I have some cognitive functions where studying was a challenge for me. Possibly due to meds also. I am now almost 38 yrs old, but still have seizures(possibly due to my health, daily stress, perimenopause). Until recently I really have not met many epileptics until I subscribed to an online blog. I have a yearly review by my docs to drive in my state. Thanks for doing this segment as it isn't as known as other conditions/diseases. Nicole

Tiki Barber: Epilepsy in the Family

Tonia DeMont, Jackson, MI — Thu, 13 Dec 2007 16:07:00 GMT

I was very disappointed with your feature on Epilepsy, I am a 47 year old woman who suffers with complex partial seizures since age 14 due to a head injury. This type of seizure is life long; you won’t grow out of it, yes medication keeps it controlled, but life changing none the less. People in my category need to be informed of all the new methods available to them. The location of brain damaged or central point of activity, not critical to life, can be removed becoming seizure free. So please don’t do a story for one “type” of epileptic, do one for all. My life was drastically changed in 1974, for the worse, due to the lack of knowledge not only from society but doctors as well. UCLA Neurology clinic is a great starting point for such information, giving other teens the opportunity at a “normal” life.

Tiki Barber: Epilepsy in the Family

Melissa Clark, Mechanicsville,Va — Thu, 13 Dec 2007 16:08:47 GMT

I have a eight year old son with a form of epilepsy that he will out grow around his middle school years.They say his type looks like ADHD and alot of boys mainly go untreated for this unless they have a visable seizure. We have stopped all meds due to the effects it has on his personality.He started having sezuires at the age of two and half.I am so glad someone is talking about this who might be able to get some action on finding a cure or a way of making better meds.

Tiki Barber: Epilepsy in the Family

Suzanne Schwartz, Milwaukee, WI — Thu, 13 Dec 2007 16:13:07 GMT

For Tammy: My son had his first and only seizure after falling in the shower when he was 16. The neuro told us he has juvenile myoclonic epilepsy (JME) which is characterized by jerking motions (which caused him to fall in the shower) and onset is ages 12-30, with teen years most predominant. He takes Depakote ER which has controlled his condition to date. The Epilepsy Foundation of America (EFA) and Epilepsy.com websites both have good information and message boards that may be helpful. Good luck.

Tiki Barber: Epilepsy in the Family

Jeannie Stevens Goldsboro NC — Thu, 13 Dec 2007 16:24:41 GMT

Thank You sooooooo much for the info on epilepsy this morning. I am 43 and have been having seizures since the age of 15--one of the worst things about epilepsy is the not knowing why. After MANY doctors and tests I went to The NC Baptist Hospital in Winston Salem NC (Bowman Gray School of Medicine) and with the help of the GREATEST DOCTORS IN THE WORLD- I have gone from having 300-400 seizures a week to about 1 every 8 months!!!! I had surgery and I went from taking 14 pills a day to 2!!! I have my life back--thanks to the Epilepsy Monitoring Center and the great doctors!!!!

Tiki Barber: Epilepsy in the Family

Linda Partridge, Houston, Tx — Thu, 13 Dec 2007 16:25:08 GMT

For Tammy, my seizures first started when I was 31 and only diagnosed with scar tissue from birth/before birth injury. Never any seizures until then but gran mal. Some doctors tend to make you feel they think we are "nuts". Get another doctor.

For Michael, I had complex partial seizure which was discovered after a wreck at about your age as well. These can come on for no reason or can be the next step in epilepsy. Check for these types of seizures to better understand what's happening to you. I always wondered what I did during these seizures until I recently underwent monitoring. Got a dvd of one of my seizures and now know that I don't exhibit many "tells" and don't appear crazy. Was very reassuring to me.

Keep the faith.

Tiki Barber: Epilepsy in the Family

STF — Thu, 13 Dec 2007 16:37:08 GMT

I'm 52 I had eilpesy since Iwas 17. Still have great life. Just go for it. There are great doctors out there. Seattle Washinton. Thanks. great piece on your show.

Tiki Barber: Epilepsy in the Family

Dolly Dietrich, Carmichael, Ca. — Thu, 13 Dec 2007 16:49:01 GMT

I was so glad to see this issue appear on the Today Show as my granddaughter (whom we have raised since she was 4yr) was diagnosed with petite mal. She is now 12yr and very athletic. She recently experienced a grand mal seizure while playing soccer and 2 wks later another while running laps at school. Would like more info. on this issue when possible. Schools really need to receive necessary information also.

Tiki Barber: Epilepsy in the Family

Wendy, Yorba Linda CA — Thu, 13 Dec 2007 16:51:41 GMT

Thank you for airing this segment. As an adult with epilepsy I know how misunderstood the condition (not disease) is. Please let people know you can not catch epilepsy. A good source of information on treatments, research and finding a Dr. who is an expert in treating epilepsy is the Epilepsy Foudation. There are local chapters that sponsor informational seminars for epileptics and caregivers. In LA each year the foundation sponsors the "Brain Storming conference" which brings experts from around the country to speak about diagnosis, new treatments and ongoing research. I am sure similar meetings are held around the nation. Check out efa.org

Tiki Barber: Epilepsy in the Family

Heather Comstock, Trenton, NJ — Thu, 13 Dec 2007 16:59:44 GMT

As an employee of the Epilepsy Foundation of New Jersey it was so wonderful to see the spotlight on epilepsy today. Unfortunately, epilepsy is rarely given the attention needed in the media, and as a result there are is often a negative stigma in public opinion.

Thanks to this morning's segment, I hope that we were able to dispell some of these myths. In particular, Tiki Barber's willingness to discuss how he and his family are leading full and productive lives with epilepsy will empower young people and let them know they can achieve their dreams.

It is important for parents and individuals with epilepsy to know that organizations such as the Epilepsy Foundation of New Jersey exist and are providing many programs and educational opportunities, often free of charge. For more information about services in NJ please visit www.efnj.com or call 1-800-336-5843.

If you are not located in New Jersey, you can contact the National Epilepsy Foundation at www.efa.org.

Tiki Barber: Epilepsy in the Family

Pam Henderson, Wayne, NE — Thu, 13 Dec 2007 17:01:56 GMT

I was glad to see epilepsy addressed. I would like to see more of a story on the absence or partial seizures.
My son is now 9 and was diagnosed when he was 3years old...it was very scary he just started rolling his eyes and stuttering....we immediately took him to the dr.... 50-100 seizures was a daily routine,after a trail of medications/depakote caused tremors, lamictal made him dizzy, topamax caused total loss of speech, finally Celontin worked and he has been seizure free for 3 years....he only has about a 10-15% chance to outgrow the seizure....
We need to bring this disease out into the open, families like myself need support for what we go through on a daily basis Thank you

Tiki Barber: Epilepsy in the Family

Kelley Nolan, Oxnard, California. 93036 — Thu, 13 Dec 2007 17:05:06 GMT

Thank You for talking about Epilespy.
I have had Grand Mal seizures since I was 18. I am now 53 and still have seizures. I have found I have I have to stay away from stress, and certain movies have set off my seizures.
As I get older I am more involved with my local Epilepsy Foundation in my area. By website or by mail.
In my opinion hearing a calm voice that I know talking to me, and of course getting things out of my way and keeping me safe from harm.
I was a teen from the sixties when my mother a nurse would put a spoon over my tongue, and later a tongue depressure. I am glad those days are over.
Please keep finding why we have seizures, because even though I have auras that that tell me I'm going to have Grand Mal seizures at my age. They will always scare evweryone around me unless I get lucky and have someone near me who knows what to do about seizures, eveyone around will call 911.Which is a blessing, but embaressing at times when I know I just have to let the sizure run it's course, but always helpful if someone can time how long a seizure is so they can tell the Emts or fire deptartment. who ever arrives first at the scene.
This is all that has that has happen to me.Nueologist that you like are good to have also.

Tiki Barber: Epilepsy in the Family

Rebecca Fernandez, Springville CA — Thu, 13 Dec 2007 17:14:38 GMT

Tiki and NBC group,

Thank you for the segment on Epelipsy this morning. I connected with everything you were saying because my daughter Ashley was diagnosed with Petit Mal seizures at age 4. Like Tiki and his family the doctors hope that your child will grow out of them but unfortunately she has not and also deals with complex partial seizures. What I would pray that someone would talk about is the emotional issues that these children go through once they hit the teen years. Ashley is now 16. Though she has grown up with this and has been a trooper undergoing years of tests and procedures alond with the Vegus Nerve stimulator surgery to control the seizures; there is nothing more heart wrenching than to see your child wanting to go through some of the normal teen stages when their peers are taking those steps. I have seen the disappointment in her eyes this past year knowing that she will not be able to do everything she would like to (like driving)and how will her future be affected as an adult. Side affects of medications have caused weight gain and other medical issues have come from that. This time in any young persons life is so critical to keep them on the right path. Our faith and Ashley's faith in God has kept her from falling through the cracks of anger and bitterness and for that I am thankful.
I do believe that their are many teens with Epelipsy or other disorders that are dealing with the same issues as Ashley. I wish there was a peer group with a medical facilitator where these teens could gather on a monthly basis to vent their emotions, concerns, fears. To be around others their age who understand them. Communication is the key and this concept could only bring positive results. I really hope that NBC will do a future segment on advocating the need for our teens who deal with these disorders.

Thank You.

Tiki Barber: Epilepsy in the Family

Judy Ramos, Fresno Ca — Thu, 13 Dec 2007 17:16:07 GMT

Thank You, finally someone is reporting on Epilepsy. I am a 48 year old woman who has had epilepsy since I was 6 yrs old. I have grand mal seizures but they are under control. When I was 35 yrs old I was having more seizures, and it was what I think brougt on because of my periods. I would track my seizures and about 3 days before my period or 3days into my period I would have a seizure. I found that I was not eating as well and under stress and emotional that my glucose and insuline were off then the combonation of my hormornes kicking in I would have a seziure. After 10 months of having seziures I went to a new Doctor and she put me on Progescream to help with my seizures.

I am also on Tegrotal and Mysoline along with Progescream. I am under control now, but would like to know will I grow out of my seizures?

I would love to know more about people who had epilepsy as a child and still have it today. Or is there hope that we will grow out of it like Tiki and other lucky people that have had seizres.

Tiki Barber: Epilepsy in the Family

Vicki Kopplin, St. Paul, MN — Thu, 13 Dec 2007 17:26:31 GMT

Thank you SO much for your segment on epilepsy. We are working hard every day to end the stigmas attached to seizures. Tiki, it means so much to all of us to have someone like you speak on behalf of your son.
In Minnesota we've started a program called "Shining Stars" to recognize all kids with epilepsy. Our hope is that they know that they are not alone and that epilepsy is something they have - and not who they are. There are more than 200 kids in our program that recognizes and celebrates kids with seizures.
Thank you again for bringing much needed attention to this important topic!

Vicki Kopplin
Epilepsy Foundation of Minnesota
www.efmn.org

Tiki Barber: Epilepsy in the Family

Nita Patel, Fremont, California — Thu, 13 Dec 2007 17:32:36 GMT

My son has a epilepsy since he was 5years old he is
8years of age. We had try 6 different epilepsy medication. We also try Methylprednisolone. Medication is not helping with control of seizure yet! He haslots
of learning disability and cognativites. Next year we are thinking to put him on diet call Ketogenic diet. I would like to know if any body has try and how it helps. If MSNBC today show would have more information or bring more information about The ketogenic Diet on tv. Thank you very much.
Mom

Tiki Barber: Epilepsy in the Family

Denise Lewis, Lansdale, PA — Thu, 13 Dec 2007 17:38:04 GMT

This sement really hit home for me. When my son was 15 months old he had his 1st febrial seizure. It was the SCARIEST moment of my life - even to this day. At the time I knew nothing about this, but my nephew who is only 2 months older than my son, was beginning seizures. After several visits to the doctor (for my nephew)his situation unfortunately turned out to be epilepsy. My son only ended up having 2 more seizures and grew out of them. I am convinced though that my sons seizures had something to do with the MMR shot he received 2 days prior to his 1st seizure. I always have, but today reminded me again, how fortunate I am that my son out grew this and is all in all a healthy 12 year old boy! My nephew though (and I feel somewhat guilty) is another story, even though he is able to go to school, he is just not like other kids his age and has been on numerous medications. I too am hoping there will be a cure or treatment, that really works, in the NEAR Future.

Tiki Barber: Epilepsy in the Family

Joelle Medina, Highlands Ranch, Co — Thu, 13 Dec 2007 17:40:04 GMT

Thank you so much for this segment. I am the mother of a four year old boy who started having seizures at the age of two. We are still trying to find the right treatment for him. The other children's stories are very similar to my son's. It makes me ask myself what I should be doing to raise awareness and help all of our kids.

Tiki Barber: Epilepsy in the Family

Laura, Indianapolis, IN — Thu, 13 Dec 2007 17:49:47 GMT

This is for Rebecca Fernandez:

My daughter is also 16, and has been having grand mal seizures since she was about 2 years old. I just wanted you to know that I completely empathize with what you are going through! This is such a painful time for our family, as my daughter is not able to drive or do things that other teens are doing, and it's difficult to see her go through it. It would be helpful for us to find a support group for her. It's much better now than when she started having seizures -- with the internet, we are able to connect with more people who are affected by epilepsy. We used to feel very isolated, and while there is still some isolation now that she's a teenager, it's better than it was 14 years ago!

Tiki Barber: Epilepsy in the Family

Joelle Medina, Highlands Ranch, CO — Thu, 13 Dec 2007 18:02:54 GMT

My son's struggle with epilepsy is so similar to the first boy's story that I felt I the father was speaking for us. It makes me ask myself what more I can do to raise awareness and help all of our kids. Thank you for helping to raise awareness.

Tiki Barber: Epilepsy in the Family

ruthie carnes — Thu, 13 Dec 2007 18:12:46 GMT

very good topic I was diagnoised a few week ago
as having seizures.

Tiki Barber: Epilepsy in the Family

Mike Henle, Las Vegas, Nev. — Thu, 13 Dec 2007 18:45:08 GMT

Your report on epilepsy Thursday morning was very interesting and informative, especially considering Tiki Barber's personal experiences with the disorder.
In my case, I had epilepsy for more than three decades as the result of encephalitis when I was an infant. The years with epilepsy were challenging, to say the least, when considering the seizures and the medications. Every day was a mystery considering that we never knew what might happen.
However, I am one of the lucky ones, since epilepsy was removed from my life on Dec. 6, 1994, when doctors at Scripps in La Jolla, Calif. performed right-side lobectomy brain surgery (I was nearly 44 at the time of the surgery). I had four seizures the day before the surgery and haven't had another since, so I am undoubtedly one of the luckiest people in the world.
Most important, though, is that epilepsy needs to be discussed so that people are (a) aware there is help out there and (b) understand that they are not alone in their struggles. Your staff and Tiki Barber did a wonderful job of presenting the story while also showing that there is hope in dealing with epilepsy, which can be both frustrating and frightening.
In my particular case, I learned about the surgery while watching a KVBC TV-3 news report in 1993 in Las Vegas. Truthfully, that report probably saved my life and your report this morning could very well do the same for many thousands of people suffering either directly or indirectly with epilepsy.
Because of my own past experiences with epilepsy, it pains me to see people struggling with the disorder. Hopefully, stories such as the one on the Today Show will help provide guidance to those in need.
Keep up the good work!

Tiki Barber: Epilepsy in the Family

John Monahan, Athena, Oregon — Thu, 13 Dec 2007 18:45:11 GMT

I am 40yrs old and was diagnosed with epilepsy at the age of 5yrs. It has been said that I have outgrow it twice now in 35yrs. I am currently having siezures, I guess I just want people to know that if they are ever diagnosed with epilepsy they will have to continue being on the lookout for seizures. Even when you are off the medication you need to watch your diet, sleep and alcohol usage. I also would like it if you did a more complete segment on epilepsy showing the different types as well as the medical advancements that have been made through the years. When I was first diagnosed the only test they had was the EEG now there is the CAT Scan and the MRI. I would not say the advancements have been fast coming but at least they are there and epilepsy has become better know in the last 35yrs.

Tiki Barber: Epilepsy in the Family

Lou Ann Ames ,Dundalk, MD. — Thu, 13 Dec 2007 18:57:13 GMT

Please Read.
8 months ago I had a my beautiful grandson and life was good. For about 2 weeks! He started having siezures, arms, legs, head would all shake. First they would last 5 second, but they would happen alot. My daughter knew something was not right. Gosh he was only 2 weeks old. WE took him to the hospital where he was having them every ten minutes. after that he has been in and out of the hospital alot. They have done spinal taps, eegs, genetic testing, ekgs, metabolic testing, and lots of blood testing. He now has 5 different type of siezures. grand mall, silent siezures, internal siezures, sceaming siezure, some type of sleep siezure. this child of 8 month old is on high dose of phabaritol and kepper with some type of med you place in his behind in an enmergentance and then rush to the hospital. Right now he is just starting to roll over and grab toys. He doesnt hold his head up for long before he gets tired and you need to support him again. He is a wonderful baby, never crys and has a killer smile even after all he is going through. He was at U of M at first but we were told to take him to J.H.H. We have and he now is being seen by the head of peds nero. depatment. Still looking for answers.

Tiki Barber: Epilepsy in the Family

Bill Fontana, NYC — Thu, 13 Dec 2007 19:02:21 GMT

I suffered with epilepsy from 1960, I was 14, until 1994. In 1993 while working overseas I had a major seizure. My employer, Citibank, flew me to Singapore where I was diagnosed, and for the first time told I had an operable condition. Up until this time I had only been given medication and more medication. I returned to the States and after a 10 hour right temporal lobectomy, I was cured. I have since used my position and international background to speak with patients considering and/or preparing for the operation. Should there be anyone that is considering surgery and would like someone with whom to speak, I am always ready.

Tiki Barber: Epilepsy in the Family

Kelley, Atlanta Georgia — Thu, 13 Dec 2007 19:03:23 GMT

NBC & Tiki,

Thankyou for taking the time out to discuss epilepsy nationally!! I am 44 years old and had an auto accident on December 1st. I began to have a siezure, my foot pressed on the gas and I crashed through a yield sign and finally into a telephone pole. My 11 year old son was in the car with me. I have not had a seizure since I was 9 (35 years ago). Now it has come back. I am currently on medication and undergoing numerous tests! I have no recollection of the accident and now the even scarier part is finding out the results of the tests. An unknown reason could be better than some other findings. Time will tell. Thanks again, a huge Tiki fan!

Tiki Barber: Epilepsy in the Family

Lisa Clark Henderson Nevada — Thu, 13 Dec 2007 19:07:39 GMT

My son is struggling with epilpsey He has Grand Mals they are wso frightening even more when he doesnt want to take the meds He had two seizures at his work and he really loves the job he is hoping they wont fire him He wants to have the brain surgery but his dr says to risky

Tiki Barber: Epilepsy in the Family

Becky Gore, Manteo, NC — Thu, 13 Dec 2007 19:07:59 GMT

A tremendous "Thank you" for a wonderful segment on epilepsy. We desperately need more coverage and information to share with the public. My daughter was diagnosed 2 years ago with epilepsy at the age of 20. She suffers with grand mal seizures. She has had to try many different medications and recently had the VNS placed to help control her seizures. She is currently in college, which is wonderful considering the amount of medication she has to take. Each day is a victory when there is no seizures! But the anxiety that constantly effects her and the family is huge! She suffered from petit mal seizures as a young child, whereas she would "drift off" We never new that she was actually suffering from epilepsy! Her Dr.'s missed it as well. Many children are misdiagnosed with ADHD and not properly diagnosed as with my daughter. I hope with your attention to this widespread disease it will trigger more awareness and more research to help the ones suffering with this and their families. Thank you again for recognizing and featuring this segment that is so rarely discussed

Tiki Barber: Epilepsy in the Family

Laurel Perrault, Ishpeming, Michigan — Thu, 13 Dec 2007 19:21:39 GMT

I had a sister who had grande maul seizures. The first one was when she was two months old. That was in the summer of 1969 when there wasn't alot of information on epilepsy. We lived in a rural area were we didn't have the privileges of specialist. Once a year a doctor would come up to the upper penninsula of Michigan and would see several of these children with this medical condition. My sister was put on several medications, some experimental-none ceased her seizures. The medication would help decrease the seizures for a while and if we were lucky a new aniti-seizure medication would come out and that would work for a while. After many years of being on anti-zeisure medications, it started to take a toll on my sister at the age of 33 my sister had a seizure and passed away. It was just to much for her body to handle any longer. It's been 5 years since my sister has passed and I can't beging to tell you how greatful I that someone is finally looking at the cause of epilepsly and not just the treatment. Hopefully that there will be a cure for this life affectting disease.

Tiki Barber: Epilepsy in the Family

Debbie Bay Ridge Brooklyn — Thu, 13 Dec 2007 19:24:15 GMT

It"s about time Epilepsy is being discussed nationwide,thanks to the Today Show.We need much more money being invested by our government,like they do for cancer, aids, and other diseases,to find a cure for this sometimes debilitating disease.Although medication can be helpful to some,there are others, that have to take multi medications,with horrendous side effects,and even then ,there are for some, breakthrough seizures.Its almost equivilant to putting a bandaid on a bullet hole. Temporarily it will help,but in the long run, the hole is still there.Just like with seizures,the medication is the bandaid,but the disease is still there.I have a 20 year old son with autism( high funtoning) that started having seizures when he was 16,snd although he has not had any for over a year,he still has to be on medication ,and so the bandaid is in place,but instead of relying on a temporary solution,we need to have a permanant solution.I thankyou Tiki Barber,Meredith Viera,and Nancy Snyderman,for doing this show,and to continue doing more shows,and updates,as to what is being done to find a cure.Recently Supreme court Justice Roberts,had suffered a seizure,and I only wished that he would have publicly discussed it,because he is such a powerful person,which would have brought more attention and awareness to this disease,and in turn ,opening the eyes of many powerful people who can make a difference ,in our government,to push for more funding ,to find a cure.

Tiki Barber: Epilepsy in the Family

Linda Partridge, Houston,Tx — Thu, 13 Dec 2007 19:29:52 GMT

I'd be willing to bet that the Today Show had no idea how much this really affects Americans, not to mention other countries. So many individuals with the seizures but also their families. For those of us no longer able to drive (and I feel the pain for the teenagers) it is painful to put this burden on our families both financially and time consuming. Just once I'd love to run out to pick up something I need at the moment I need it or to drive out to the country by myself. It's funny but of everything I've been through, the lose of individual freedom is the hardest. Suburban living means pleasant areas to live but no public transportation available at the drop of the hat. But, the day I realized I was (still inside the building) somewhere not intended, with my toddler granddaughter is when I started to really be frightened by this condition. I temper all my decisions concerning my grandchildren because of this condition. To think that something could have happened to her is so very, very scary. That's one reason I've considered brain surgery. Now I just have to wait for the results to see if I fit the doctors' criteria.

Tiki Barber: Epilepsy in the Family

mom of a hero — Thu, 13 Dec 2007 20:14:59 GMT

Thank you so much for discussing this. My son had his first febrile when he was one and has had 7 since. Plus he also has a history of myoclonics and currently has absence (petit mal) seizures. When he has the absence... which he has multiple times a day, it is hard for anyone who isnt familiar with epilepsy to recognize. He just zones out, it kinda looks like daydreaming. As a result of the seizure and the medications he take to try to control them he struggles in school.
There are more people diagnosed with epilepsy than breast cancer annually yet you never hear about them because they are living with it in silence for fear of ridicule and being treated differently.

Tiki Barber: Epilepsy in the Family

Mary, Bolivar, MO — Thu, 13 Dec 2007 20:23:46 GMT

It is great that you had this kind of story to enlighten so many people. I had been treated for epilepsy for about 35 years. My last seizure was about 21 years ago. They really have come a long way with medicines for it. I have two children and each of them had seizures, one brought on by his fever and the other only had one. They have not had any more since, so we hope they have outgrown them.
Thanks so much for letting this information out.

Tiki Barber: Epilepsy in the Family

Cookie Weatherspoon, Virginia Beach, Va — Thu, 13 Dec 2007 20:38:23 GMT

Thank you so much for the subject today on seizures.
My son Jon who is now 29 experienced the fevbrile
seizures for most of his young life. HE had his first
one at age 10 months. After getting the rescue squad
he was immediately rushed to the hospital and immediately put on phobarbian whic he had to stay on until the age of 9. I saw the mood changes and how
his mental and physical developement were hindered. I
still believe that this has had a long time effect on
his mental growth. I was just really glad that this condition was made public, I felt that I was the only
parent living with this dreadful situation. I have
often wondered if there was any research being done
on this condition. Please, let me know if our situation can be of help during any study.

Tiki Barber: Epilepsy in the Family

Tricia Burkey, Kodiak, Alaska — Thu, 13 Dec 2007 21:22:26 GMT

I wan t to thank you for your segment on seisures. I would like to see this topic expanded to the onset of seizure disorders in adult. My son married in March of 2005 and his wife woke up to him having a seizure in bed. That was the first of 6 he would have during that day. After testing, he was sent home with a theraputic dose of anti-seizure medicine. Five days later his wife went to the store for groceries and he had a grand mall. When his wife returned home, he had inhaled his own vomit. After 4 days in ICU, with inhalation pneumonia and more tests, we learned that our son had a Venious Angioma growing in his right frontal lobe of his neocortex. This type of disorder we have been told onsets between the ages of 20 - 40 years and is inopperable. It is considered a birth defect. As the mom, I always wonder if I could have in someway prevented this.
There is so much information needing to get out to the public on this subject. I would like to know of support groups for those who suffer with Epilepsy and for their families as well.

Tiki Barber: Epilepsy in the Family

Donna Roberts, Oxford, Indiana — Thu, 13 Dec 2007 21:28:21 GMT

I'm so impressed to see that finally someone is taking a interest in getting the word out about seizures and epilepsy. My 16 year old son has had idiopathic seizures for over 9 years. And he will be one of the many that probably will never drive. It's very important that american's learn to support the people and families that Epilepsy strike.

So thank you for the timely story today

Tiki Barber: Epilepsy in the Family

Deb — Thu, 13 Dec 2007 21:32:03 GMT

I was really impressed with your epilepsy segment this morning. Kudos to Tiki Barber for talking about his family's personal experience.

Also, well done and thank you to the woman representing Cure. They sound like a great organization, and I hope to hear more from them in the future. Their video was nothing short of inspiring. It's great to see that someone is putting a human face on epilepsy without diminishing the terrible effects the disease can have on children and their families. Also, what a great job they've done to change the dialogue. We need to fund research and find a cure!

Great job!

Tiki Barber: Epilepsy in the Family

Shelly Venenga, Willmar, MN — Thu, 13 Dec 2007 21:41:43 GMT

What a fabulous segment. I have a 3-year-old son with uncontrolled patrial-complex seizures. It means so much to hear people get E out in the open! You have raised so much awareness and given many people hope. Thank you.

A side note - The Epilepsy Foundation of Minnesota is doing an education week in our town the week of April 7th. If you would like to see this wonderful group in action out in the community, come see us!

Tiki Barber: Epilepsy in the Family

Cindy Holt — Thu, 13 Dec 2007 21:48:24 GMT

I was so happy to see coverage on Epilepsy. I had one convulsion when I was 8 months old, and that was it until I turned 11 and that's when the seizures started. I had complex partial seizures for over 25 years before going through all the testing to see if I was a canidate for surgery.

My neurologist sent me to the Universtiy of Va in Chaarlotesville Va for ten days of testing. Doctors found scar tissue on the right side of my brain.

I was a canidate for the surgery and had the surgery in June of 2002. I have remained seizure FREE for five years now. It feels so good to have my Freedom back! and to be able to drive again is such a blessing.

I have been blessed with three beauitful daughters all of which are healthy and do not have epilepsy. I do hope to see another segment on epilepsy not just for children but also adults. it can be so lonely when you think you have to suffer in silence because no one understands the condition.

I am a H.O.P.E. mentor for the epilepsy foundation in my area. Thanks again for the great job!

Cindy

Tiki Barber: Epilepsy in the Family

Jody Bohman, Summerville, SC — Thu, 13 Dec 2007 21:53:50 GMT

My son was diagnosed with seizure disorder when he was 12. They tell me his resistance was low due to flu symptoms and he suffered a grand mal seizure while traveling. He is now 24 yrs. old, He takes Depakote 3 time a day to control. He hasn't had a seizure due to medincine in quite a while. Although when he misses his doses, he will have a breakthrough seizure. We were also told he would grown out of them. I am waiting for the Lord to just heal him totally. I will say each time he has one they are less dramatic than the one before. He has had less than 10 in twelve years.

Tiki Barber: Epilepsy in the Family

Audra Main, Oklahoma City, OKlahoma — Thu, 13 Dec 2007 22:03:39 GMT

I have a 40 year old brother that has had seizures since he was about a year old. He started with just noraml seizures that did not last but a couple of minutes and just about one every two or three years. Then, in May of 2005 he had a seizure that lasted 8 hours and had to be put on a vintalator for a day. He then started having drop down seizures that would affect his everyday life. Then, finally he had another seizure in October 2005 that literally almost killed him, it lasted 8 hours and he was on life support in ICU for about 5 days. He now has a seizure about every 6 weeks with drop down seizures in between. I am not telling this to scare anyone but most symptoms of epilepsy seem to be when a person is a child and not as dramatic but I want everyone to be aware that they can get progressivly worse. The one thing that has seemed to help in his situation is the Vega Nerve Stimulator that was implanted near his heart in November, 2005. It seems to bring him out of his seizures so they do not last as long. I found this very weird that this story aired because he was at my house Saturday night and had a seizure. He is fine and it was not bad but it is nice to know there are other families out there like ours. This disease has affected my family for almost 40 years and still affects us everyday. My brother is an amazing man that just takes this in stride and goes on. He never complains that he can't drive or that he is limited on his activity. He is the most positive person you will ever meet in spite of his hand he has been dealt. He is amazing and I wish everyone could have his big heart and live life to the fullest like he tries to do.

Tiki Barber: Epilepsy in the Family

Claude, Chicago, IL — Thu, 13 Dec 2007 22:14:04 GMT

What an absolutely fantastic piece for the Today Show to host! Thank you to that show and NBC for dedicating airtime to such an important and overlooked cause. Epilepsy effects so many families around the world, and yet so little focus is put on finding a cure, this program was a breath of fresh air. Without attention being paid to this disease (such as that given by Tiki Barber and the Today Show) and the crucial work being done by organizations like CURE to not only understand, but also successfully treat and prevent the disease, we will be hard pressed to make forward progress.
I was so struck by the video shown about the fathers of children with epilepsy that I decided to look on the internet a little and see where it came from. I didn’t realize that CURE had produced that video, along with many others. In fact, the organization has a fantastic website with information about epilepsy, lots of resources, and ways to become involved in finding a cure, in addition to some of the most touching and gripping videos I have ever viewed. They are simply brilliant, well produced with powerful stories of hope and perseverance in the face of tremendous odds. What I liked most was this organization’s constant dedication to the belief that with the proper resources and energy, a cure for epilepsy is possible. I encourage everyone to visit www.cureepilepsy.org I promise it will be well worth your time.
Susan Axelrod, CURE and all those who are working to find solutions, answers and understanding for epilepsy should be highly commended for their dedication. The Today show should commit more time to such individuals and organization because our society needs to be reminded of the hardships so many of us face. But more than the hardship, it should be a reminder that with our combined efforts and energies, real solutions are possible. Thank you to CURE and Susan for bringing us that awareness and hope.

Tiki Barber: Epilepsy in the Family

Bridget, Kerhonkson, NY — Thu, 13 Dec 2007 22:27:52 GMT

Thank you so much for covering this topic on your show. Many people do not understand this disorder or do not want to. My daughter was 6 years old when she had her first grand mal seizure. she is now 11 years old and we were told that she would outgrow them instead as she got older they have gotten worse. We thank GOD for everyday that she goes seizure free. And thank you to the people who research this disorder.

Tiki Barber: Epilepsy in the Family

TiredGirlie - Los Angeles, CA — Thu, 13 Dec 2007 23:32:10 GMT

The very last line of this piece is, "If someone had a seizure right now, would you know what to do? Most people wouldn't. It affects a lot of people." THIS IS A TRUE & SERIOUS POINT. SO, WHY NOT TELL PEOPLE?

I began having grand mal seizures at the age of 12 and am always glad to see any coverage of seizure disorders in the MSM. Unfortunately, there never seems to be any "Here's What YOU Can Do" info. When Chief Justice Roberts suffered a seizure, I was hopeful and there was a lot of good info out there, but nothing to dispel the idea that people should try to put something in the mouth of a person during a seizure. The absolute worst injuries I ever suffered during 39 years of seizures was when a kind Samaritan put his fingers in my mouth.

Thank you for some information; Now, please give us more! :-)

Tiki Barber: Epilepsy in the Family

Barb Cote — Thu, 13 Dec 2007 23:47:32 GMT

Very interesting . I too have a daughter who starting having seizures at 18 year old, just a couple of times a year so far. She is now 22. The doctors say there is no scar tissue in the brain therefore no epilepsy. It seems to be just before her periods so I wonder about hormones. She has had every test under the sun and the doctor came up with a story about some nerve in the back of her neck that could have been pinched during the birth process. I have also heard from other people who have been given this explanation. What hogwash!!!

I went onto "www.edgarcayce.org", then I searched for seizures. There is mention that some seizures that are not labelled "epilepsy" do not originate from the brain, they originate in the abdominals. Cayce insisted that most cases of epilepsy were caused by "adhesions" in the lacteal ducts of the abdomen.Lacteal ducts are part of the lymphatic system. They absorb nutrients from the small intestine as digested food passes through the intestine.

This almost makes sense because if she feels sort nauseated or funny in her stomach, that is sign that she may seizure and she takes some medication that helps to avoid it. I'm not sure what she takes.

Is anyone out there in any position to actupon this "lacteal duct" clue. Edgar Cayce was a very famous psychic who correctly diagnosed thousands upon thousands of people. Treatment is directed at breaking up adhesions in the lacteal duct area which is located along the right side of the abdomen.

Is there a doctor anywhere or a research person anywhere willing to take alook at this information and act upon it. I think it is a major clue as to the unsolved mystery of where do seizures come from but I am just one lowly person terrified for her daughter, praying night after night that she remains safe and healthy.

Tiki Barber: Epilepsy in the Family

Lori McCandlish, Cumming, Ga — Fri, 14 Dec 2007 00:12:51 GMT

Thanks Today Show for a job well done to increase epilepsy awareness. The more it is discussed, the less stigma there will be. We have been very open about our child's epilepsy, and find that if it is not hidden, people feel more comfortable around her. Epilepsyfoundation.org community boards would give you a great perspective on people that are dealing with uncontrolled epilepsy, or has a child that is uncontrolled. 70% of people get control from the first medication, but the boards give you a good insight to the 30% that don't. We are now trying our 5th drug to hopefully gain control over her "atonic" seizures. There is such a wide spectrum of epilepsy that it is hard to do justice in a 6 min. time span. However, I thought it was a job well done. It would be great if more time was given to epilepsy awareness.

Tiki Barber: Epilepsy in the Family

Laura H. Deputy, Indiana — Fri, 14 Dec 2007 00:29:27 GMT

Thank you for drawing attention to seizure disorders. Both of my children have epilepsy. Being a parent of 2 children with epilepsy is extremely challenging. It's important to know first aid for a seizure. Just like the last line in the segment, "Do you know what to do in case of a seizure?" Running a segment on that topic would be great!

Tiki Barber: Epilepsy in the Family

Pat, Long Island, New York — Fri, 14 Dec 2007 00:35:54 GMT

my ten year old daughter was diagnosed with absence seizures whwn she was 5 years old. She has been on many different medicatons . None seem to control her seizures.She does very poorly in school. We feel so helpless. It was nice to see someone talking about epilepsy on t.v. I hope in the futuure epilepsy will be talked about more often.

Tiki Barber: Epilepsy in the Family

Erica St.Petersburg,Florida — Fri, 14 Dec 2007 00:39:23 GMT

Thanks for discussing this condition.My 16 yr old daughter was diagnosed with epilepsy September of this year after suffering from a seizure.It was very frightening at first.I've done a lot of research on the condition and we are in the process of seeing specialists as well.She has had one more since then but we are monitoring what triggers hers such as sleep deprivation.I feel that it is very important for public figures to speak out about issues like this.Thanks !

Tiki Barber: Epilepsy in the Family

Louis Heebner — Fri, 14 Dec 2007 01:22:13 GMT

i have had epilepsy for as long as i remember. society was fearful of it & because of that fear i was treated as a troubled disruly child rather than a normal child with a malady. three foster homes used excuses such as back pain or personal sickness & had the government remove me to another home because they feared they would be charged with giving me the disorder. even today i tell few people about my condition because they steriotype me into a retardation category. fortunately i had senced their ignorance & had done my own personal research. my seizures happen twice a year, during the spring & fall equinox. the atacks place me in a very dark void that i am aware of being in but can do little to change it until i come out of it. for about 1 - 2 weeks i am very sore for my musles contract & my mind is fuzzy but after awile all my memory comes back to me. i do not take drugs because of a bad side effect from one type i was given. also because there is no record of me having them nor do they know why i have them. i have chosen to allow nature to take its course. warning signs are waking up tired & thus when i awake tired i make sure that i do not have a strenuous day. what i find interesting is that i experience premonitions of the future after an attack. future events flash in my mind for only a few seconds then when that event happens (usually 2 months - 2 years) i have deja-vu type experiences. I have found this to be a blessing of sorts for i have actually stopped others from harm after recognizing that i had seen the possibility of what may happen. i know it may sound odd but one just has to accept that certain things happen that we can not control. All we can do is search the variables & try to find the appropriate solutions that causes no harm towards others. it is a gift we are given & we must be responsible in adhereing to it. i dont blame the ignorance of others for my condition all of us learn in our own time. research still has a long way to go but it is hoped by me that researchers accept the possibility that epileptics may have an insight into the spiritual aspects of this world. I would not have become the spiritual person i am had i listened to the ignorance of unlearned people telling me that i am a disgruntled & useless person who would end up eventually being a criminal. It is my hope that more physicians listen to their patients who express that they may have a link to premonitions & deja-vu experiences. many patients u will find do have these gifts but are afraid to say anything for fear of being ridiculed. many famous people have had this disorder it may not be a bad thing we just have to explore the possibilities that we are more than just people who live on this earth just to exist. courage to all of you who read this & also relate to what i am saying, follow your instincts their usually never wrong when your honest with yourself above all. thank you for letting me share this with you & may we all make a better effort in not being judgemental towards those things we fear. all people have a yearning to be good people its struggling to understand then accept the differences in others.

Tiki Barber: Epilepsy in the Family

Pam Skaggs, Chatham, IL. — Fri, 14 Dec 2007 01:31:42 GMT

I've had epilepsy since about 13years old. I'm 42 now. I have cadimenal epilepsy. I have only have seizures with my mentral cycle. I also have a Vagus Nerve Stimulator. It is a small device that was implanted in my chest and attaches to the vagus nerve and lets off small vibrations that can stop a seizure. It comes with a magnet and I or someone else and stop or start the stimultor. It's like a pace maker for the brain. I've always thought that more people need to know about seizures and what to do if someone has one. I always tell my friends what to do. In fact, I have cards with information I can give to them. A person who knows is less afraid. Seeing the word epilepsy on T.V. today was like seeing my middle name. Epilepsy is such a big part of my life! Thank you for having the epilepsy information story on the Today Show!

Tiki Barber: Epilepsy in the Family

Mike Wierzbinski Dallas, TX — Fri, 14 Dec 2007 01:37:25 GMT

Tammie, in Aransas Pass,TX. I would encourage you to contact the Department of State Health Services (Texas). I work with seizure patients in Dallas, TX. I believe there is an epilepsy contractor in your area.

Tiki Barber: Epilepsy in the Family

Julie Ames, Carlsbad, California — Fri, 14 Dec 2007 01:49:11 GMT

Heartfelt thanks to NBC and Tiki Barber for discussing epilepsy in such a comfortable and honest way. My son was diagnosed with mild seizures when he was only 5 and his dad was about to leave for Iraq. This was a new pre-deploymnet stress and period of great concern and uncertainty for us. We had great medical care through the Navy and now at age 11, our son's seizures are well-controlled. I would like to ask Tiki and others with a chance to speak publicly, to use a phrase such as "people with epilepsy" vs."epileptic people". Just like you'd say, "a person with asthma" or "a person with diabetes". Otherwise, an individual is now defined by their condition.
We live in Southern California and my son surfs and snow skis. He says, "Mom, you can't let having epilepsy hold you back from doing what you love". The Epilepsy Foundation is another great resource that was helpful when he was first diagnosed -- there are chapters around the country. We recently met a nationally-ranked ultra-marathoner who is an inspiration to everyone with epilepsy -- she is proof that athletes can thrive and succeed in even the most challenging circumstances.

Tiki Barber: Epilepsy in the Family

Gretchen, Rochester, MN — Fri, 14 Dec 2007 01:55:05 GMT

Thanks so much for helping to continue to break the stigmas that are attached with epilepsy. Having someone like Tiki Barber discuss his and his son's struggle with epilepsy shows great courage. I had my first seizure when I was 3 and the doctors have determined my seizures to be idiopathic in nature. Great strides have been made and my seizures are under control. I am now 40 and lead a very 'normal' life. It can be done but more research is needed. Thanks again for the effort !!!

Tiki Barber: Epilepsy in the Family

Jennifer Sweeney, San Diego, CA — Fri, 14 Dec 2007 01:58:02 GMT

Thank you so much for discussing such an important issue that affects more than 2.5 million people in the U.S. today. I'd love to see more discussions about Epilepsy in the future! Another great resource that people should know about is the Epilepsy Foundation- there are almost 50 throughout the the country that provide a variety of services for those affected by Epilepsy. Thank you.

http://www.epilepsyfoundation.org/

Tiki Barber: Epilepsy in the Family

Nneka, Houston TX — Fri, 14 Dec 2007 02:21:29 GMT

During my peace corp booth camp, a corp member had a seizure. He was sitting right beside me. That was the first and last time I ever saw that happen and it scared me! A special prayer goes out to every family dealing with the condition in every way. God remains with you and He does answer prayers.

Tiki Barber: Epilepsy in the Family

April, Lockport, NY — Fri, 14 Dec 2007 02:53:11 GMT

Wonderful segment! My daughter started having seizures at age 5 months and after 12 different seizure medications over the course of five years, her seizures continued. We finally started the ketogenic diet on 1/20/06 and her seizures completely stopped. The video with the three dads expressing their feelings was very heartfelt and really personalized what many of us are going through. Thank you.

Tiki Barber: Epilepsy in the Family

dotty pisaturo — Fri, 14 Dec 2007 03:52:06 GMT

I have a daughter who started with seizure with seizures at 16. She is know 23, in college. She had a seizure 3 weeks ago after being seizure free 3 years 8 months. She missid one dose and ended having one in class and one in the hospital. I will never get used to seeing her have them . She will be running out of insuance Jan 1, her medicine is 547.00 without insurance.Does anyone have any idea where to get help until she can get her own insurance. Thanks

Tiki Barber: Epilepsy in the Family

Gail, Newburgh NY — Fri, 14 Dec 2007 03:59:16 GMT

I was pleased in reading this article. I have had epilepsy since I was 18mos old. A little over a year ago I was able to have surgery to remove the area in the brain that caused the seizures. It is true that more needs to be said about epilepsy. People in general don't know what to do when a person has a seizure. It is frightening for both - the person (or persons) watching a seizure, but keep in mind that the person having the seizure is just as frightened because they don't know what is happening around them especially coming out of the seizure. I've had grand mal & petit mal seizures for most of my life, been on dozens of drugs that only worked short term starting w/dilantin & also phenobarbital which are fearful drugs. More people should talk about epilepsy to bring the fear out in the open.

Tiki Barber: Epilepsy in the Family

Leslie W., Springfield, MO — Fri, 14 Dec 2007 04:41:46 GMT

Thank you so much for speaking about Epilepsy. I was 11 when I was diagnosed from a head injury. I have had three tonic-clonic seizures since then. Two were in Junior High. One seizure was in college. Periodically I will have break through seizures. I now take Carbatrol. Epilepsy was something that I tried not to let conflict with my everyday life. I continued to do things that normal people do. I was involved in school activities and received a Bachelors degree in Accounting. Now I am married and have a child. When I was in college I spoke about Epilepsy in the pageants that I competed in. I new that during every pageant I would educate hundreds of people in the audience. Epilepsy is very misunderstood. Thank you. It is a blessing for you to educate about this today.

Tiki Barber: Epilepsy in the Family

Ann Donnelly, Miramar, Florida — Fri, 14 Dec 2007 05:20:00 GMT

Thank you so much for doing this report on epilepsy and Tiki Barber, thank you for sharing your family experiences about epilepsy. My son is 29 years old and has had epilepsy all his life, with his first seizure at 14 months. I especially related to the video with the interviews, especially the one father who talked about flexibility in the family's life. This is so true. In a family like ours where the seizures are intractable, uncontrolled and almost daily, plans must always be flexible and sometimes that is hard for others to understand.

Thank you. This piece was very well done and I hope you will have more information on this in future broadcasts.

Tiki Barber: Epilepsy in the Family

Jean Bunker, Napa, CA — Fri, 14 Dec 2007 06:21:20 GMT

My friend called me tonight and said she saw the today show and the story about Tike Barbers son that has seizers. Thirty years ago my daughter was diagnosed with Cerebral Palsey and Epilepsy. They said she would never walk or talk. Well we proved the Doctors wrong. For thirty years she has been on several medications. She is currently on Tegretol and Topomax. Four years ago she had surgery for a Vegas Nurve Stimulator. What a difference the stimulator has been in her life, the stimulator has controlled alot of her seizers. She seems to have one or two around her period time. Five years ago she was on a waiting list for a program at a Junior College called Transition for Indepent Living. August of 2006 she was inrolled in this program. The program teaches these young adults how to live indepently. We are in the process of getting a service dog that would be a companion for my daughter so she can live indepently and work out in the community. In July of 2008 she will graduate. It has been a long hard road but I would't have changed anything. My daughter has taught me alot and she is a very special person in my life. Through research there will someday be a cure for seizers.

Tiki Barber: Epilepsy in the Family

Jen Jackson — Fri, 14 Dec 2007 06:33:07 GMT

I'm also a 27 yr old female that has seizures...mine started when i was 21. They say they are on set clonic tonic and the only thing they can come up with is that they start on the front lobe in my right side of my brain. Also i have partial seizures, some i have everyday up to 10 or more. Those are where i get really hot and my head turns to the left and my mucles twitch but i dont pass out but sometimes i do loose my balence but i'm still conscience its really weird and i also have the grandmals also but not as frequently anymore...I myself have been on lots of diffrent medications and they don't have many options left so my doc that I see is a neroligist at the university of Iowa. He decided to try a thing called vagel nerve stimulator which is implanted into my cheast and sends out pulses to my nerve in my neck....I cant feel it unless they turn up the magnitism and then it feels like my throght is a lil tighter but my doc makes sure i'm confratable before I leave. At this time i still cant take the full setting so its up in the air with this option but I keep moving forward with this i'm willing to try anything!! I also hope they can come up with a soultion to our epilepsy condition in the future. Thanks for the great story.

Tiki Barber: Epilepsy in the Family

Jennie in Oregon — Fri, 14 Dec 2007 07:06:32 GMT

To the few people who commented here that have sudden adult-onset epilepsy for no known reason, particularly temporal lobe seizures: I started having complex partial seizures almost 5 years ago at the age of 32. It has taken forever to get a diagnosis but my new neurologist is certain they are being caused by an autoimmune condition. If you have allergy or asthma problems, are fatigued often and tend to get sick easy, and have frequent headaches and migraines, you may want to consult with a rheumatologist or immunologist. Just a thought if you're still trying to find answers.

Tiki Barber: Epilepsy in the Family

wayne — Fri, 14 Dec 2007 07:39:22 GMT

I am 56 have had seizures sense 12. lost jobs due to seizures. The word epilepsy scares alot of employers so over the years I have had to hide it. Your supposed to be protected by the American Disabily Act but and employer can skirt around it by finding a reason to let you go or not hiring you by saying someone was more quilified. In the state I live in an employer don't have to have a reason or justify letting you go. There are no wrongful termination laws like in some states. I just had brain surgery nov 14th to change my life for the good. Thank you so much for sharing your experiences. If more people are aware maybe more will have the opportunity to live meaningful lives.

Tiki Barber: Epilepsy in the Family

leon spearry wellston ohio — Fri, 14 Dec 2007 09:48:20 GMT

I am 49 i had my first seizure july25th 2000 it left me with a broken back both arms torn out billateral.I was in a hospital the best part of a year i have had several surjeries to repair the damage.I have had 2 documented seizures one undocumented I am now completely disabled from the seizures i have limited movement of my arms i am in pain 90 percent of the time.I now take dilantin mourning and night if i miss the dilantin for 3 days the onset of seizures start again it is a terrible life to live but i half to go on i never had a seizure in my life until then july 2000. I get a meak pension from where i worked and as yet today they would love me to come back to work but i am not allowed .I feel for anyone whom has a seizure problem thanks for reading.

Tiki Barber: Epilepsy in the Family

Vicki, Atlanta, Georgia — Fri, 14 Dec 2007 12:19:49 GMT

My husband had his first seizure when he was 28. He has had only 2 grand mal seizures and has been on a number of medications. He was having about 20 to 30 petite maal seizures a month. He was very depressed and had not energy when finally a friend told him about her neurologist that specialized with seizures. He had be going to a neurologist who specialized in strokes. We made an appointment and the doctor said my husband would be a great canidate for a device called a vega nerve stimulator. This has been such a blessing. My husband went from having 20-30 seizures a month to only 3-4 seizures a month average. This has changed his life. He had no energy after having a seizure and slept all the time, now he may have a seizure and still keeps going. We are hoping that one day to decrease the medication and eventually stop. He is 45 now and he had this operation about 4 years ago. I thank the people who research this disorder and hope one day they find out what brings this disorder on.

Tiki Barber: Epilepsy in the Family

Cherie, Grand Rapids,MI — Fri, 14 Dec 2007 12:47:54 GMT

Thank you for your piece on epliepsy. I had my first seizure from high fevers at age 3mths. I was diagnosed with it a few years later-and was kept under control with meds until I became a teen-and body changes. Mine was called petite mal then-a blank stare-never knew when they were coming. As we kept track of them they'd accure just before/after my period. I would go months w/o one and there were months that I'd have 2-4. When I was about 18 I went with my parents to the EC of MI and was told they couldn't help me. That hurt! I learned to live with it-it's hard-people think your "weird". In 2001 I went to UofM neuro clinic where after toms of tests-blood work-changing of meds I was told I was a candidate for surgery-it was 75-80% in my favor-I had the surgery-and have been seizure free since Sept 2003! After 40+ years of epilepsy-it was a new world! There is also a website on webmd that has a chat room for epilepsy and other diseases.

Tiki Barber: Epilepsy in the Family

Nikki, Mandeville, Louisiana — Fri, 14 Dec 2007 12:49:20 GMT

Unfortunately I was unable to watch the segment on Epilepsy, but my mother-on-law told me about it. My four year old was diagnosed with epilepsy when she was almost three. She continues to have uncontrolled seizure activity. She has small "zaps" all day, every day which severely affects her motor and cognitive function. We are traveling out of town to a another specialist next month to try and find some answers. I really ask that you do more stories on epilepsy. It is HIGHLY misunderstood and someone needs to get the word out. There are many different kinds of epilepsy and seizures and most of the world has NO idea.

Tiki Barber: Epilepsy in the Family

Carla Zolnowski, NJ — Fri, 14 Dec 2007 13:36:34 GMT

I suffered from grand mal epileptic seizures from age 18 to age 60, which over the years resulted in a broken collar bone and two fractured femurs. I was told by physicians that these seizures were "of unknown origin." All of the medications prescribed made me feel like a Zombie and actually played a role in causing the seizures. However, I am happy to report that after researching my condition and following a self-invented nutritional regimen, I have been seizure free since March 2002. This can be documented by all of my coworkers who at the onset doubted that I would ever be able find the cure for this long-term seizure disorder. Since birth, I have faced many physical obstacles life, but have always fought back with determination and a belief that I would ultimately succeed.

Tiki Barber: Epilepsy in the Family

Heather Denver, Colorado — Fri, 14 Dec 2007 13:54:39 GMT

Remember, the actual seizure is usually more frightening for the viewer. We are out of it while the event occurs. The fear comes after we have woken. From the previous notes, many fears have been expressed clearly. Medicine and Doctors have come a long way in the 10 years since I was diagnosed. The best tips: 1) trust your Doctor and the medicine 2) communicate with your Doctor if there is any issue 3) Live your life! Facts being what they are, a managed seizure condition will most likely not be your demise. I have had dark days and hurdles to leap. I also hike, rock climb, swim, drive, work, baby sit and live on my own- all things that I have been told we a concern or not to do be well meaning people. The key is, know thy self, in all things not just epilepsy!

Tiki Barber: Epilepsy in the Family

Sherry Walz, Mahnomen, Minnesota — Fri, 14 Dec 2007 15:28:05 GMT

My husband is 48 years old. He had his first major seizure in 2004 which put him into a coma. We've had 5-6 major seizures ending up with him in ICU and many, many smaller ones. He has been to the Mayo Clinic and they say he has a rare progressive neurodegenerative disorder, his brain is shrinking and he has seizures. He spent 1 year in the nursing home after coming out of one that left him unable to speak, talk or eat. Has been home since May of 2007. It is just a matter of time before it takes him completely. We recently had a neurologist with the VA point out he may have Lafora Disease, many thought to be only in children but now very rare instances are popping up in adults. It is fatal and there is a test for it. We are awaiting approval to have the test done. Thank you for your show on epilepsy. But, you just scratched the surface. It runs the gambit of ranges, types, ages and disorders.

Tiki Barber: Epilepsy in the Family

Nancy, Belvidere, IL — Fri, 14 Dec 2007 15:33:34 GMT

Thank you so much for this educational segment. I have had seizures since 1995. I'm 55yrs. old with Partial Complex Seizures. My concern, like many others, is I constantly lose my job, even though I can do my job. I call it "Silent Discrimination" I now only have 1-2 seizures a month, very minimal compared to what I have read. Please we need to EDUCATE THE PUBLIC AND EMPLOYERS MORE! Insurance companies too must stop discriminating against people with health issues! Thank you!

Tiki Barber: Epilepsy in the Family

Lenore Riccio, Glastonbury, CT — Fri, 14 Dec 2007 15:33:36 GMT

To Tiki and the others participating in the Today Show conversation on epilepsy - Thank you, thank you for this awareness segment on epilepsy. Awareness leads to funding for research which leads to cure and prevention. And along the way, education removes the stigma. I am so grateful to see epilepsy out in the open. John Roberts, want to help us out?
My question for Tiki Barber is "What can I do to help?" While an active group, the CT foundation is not giving me any "jobs." Give me something I can do.
Tiki, would you speak to the CT Foundation of Epilepsy? If you say yes, I'll work to make it happen.
Again, thank you, thank you for this exciting presentation to a large public audience. It was extremely valuable step on the way to awareness, acceptance, support, funding, curing.
Lenore Riccio

Tiki Barber: Epilepsy in the Family

Laura Reynolds Mineral,Va — Fri, 14 Dec 2007 15:45:13 GMT

I woulld like to thank you about finally talking about seizures. My grandson is 10 now he had his first seizure at 51/2. It was the scariest day in my life. We finally found a seizure med that works.But the schools when you go in and say he has seizures teachers are so under educated. Thye are afraid. I have been asked why isnt he in special ed? It just so happens he dosnt need it. I have to educate evretime he gets a new teacher. I have to show them not to be afraid and how to act. He usually will have grandmal. Then they seem to think he can swollow his tongue. I have to restrain to keep from laughing because that is impossiable. I have to tell them to roll him on his side not to restrain and not to put anything in his mouth. The old myths need to be crushed.He is 10 now and not afraid of his seizures he talks to his friends about them and what they are like. The more this topic is gotten out and people are educated the better the kids will be. We must educate everone that just because they have seaures that they have hearts and feelings just like everyone else. They are exceptional kids. They are made fun of ignored and sometimes ridiculed. It would be nice to have people not do that and think of them as I do fun , loveing, warm, kind and curious. They are tomorrows leaders and they will do a better job as todays as they have been through the worse and are fighting for the better.Lets all give thease kids a chance and educate ourselves and others Iam no longer afraid of his seizures. Or anyone elses.

Tiki Barber: Epilepsy in the Family

Dayton, Ohio — Fri, 14 Dec 2007 16:52:19 GMT

What a great use of air time! Educating the public on the conditions endured by so many is much more responsible than ridiculing those who suffer from the conditions! Please keep in mind that many kids are cruelly teased about the conditions they have. TV personalities can choose to perpetuate the taunting or work toward stopping it. Epilepsy, the way the deaf speak, weak motor coordination etc etc. Every time a television personality laughs at any of the above, the message is that it's OK to ridicule.
Ridiculed kids can become so hurt that they hurt others.

Tiki Barber: Epilepsy in the Family

Ana Barrera — Fri, 14 Dec 2007 17:07:55 GMT

My daughter had her first seizure at age 12. She didn't have another one for 2 years. She is 38 now and is still having them. She has jerks seizures we call them. The Dr. says you are suppose to out grow those kind of seizures but cannot explain why she is not. She takes 3 Depakotes a day. She gets them every month when it is that time of the month. The Dr. says that doesn't have anything to do with it. But we know it does. Or as soon as she gets in the shower in the morning. I wish they could find a medicine that would work on her. She forgets alot of things and can't remember things. We have never heard of these kind of seizures on somebody else. Maybe somebody out there has these kind of seizures .She has 3 children and thank God they don't have seizures yet anyway. But yes Thank You for having this out on the Today Show maybe somebody can come out with something that works.

Tiki Barber: Epilepsy in the Family

Jen — Fri, 14 Dec 2007 18:02:52 GMT

To Heather in Denver - the seizure can be just as frightening, if not more so, for the sufferer if he/she has partial seizures that cause no loss of conscienceness. What's even worse is, most people are aware of what grand mals and petite mals are, but are completely clueless on the signs of a partial seizure. I had never heard of them before I started having them; when I thought of the word "seizure", convulsions or blank staring were the only things that came to my mind. I think that holds true for most the general population too.

Tiki Barber: Epilepsy in the Family

ms.jones — Fri, 14 Dec 2007 18:09:51 GMT

it is ironic i used to call my youngest son tiki when he was first born because i'm such a fan and he has had feberal seziures and when i saw the show yesturday and heard tiki talk about the condition it sent shock waves through me

Tiki Barber: Epilepsy in the Family

Tisha Lane 41 east 48th street apt. 3 Holland, MI 494223 — Fri, 14 Dec 2007 18:28:12 GMT

Thank you so much for you segment on seizure disorders. I have 2 kids with epiplepsy, my son, 14 had surgery for his and they are not getting any better and my daughter, 19, her seizures are controlled and she has a beautiful daughter. We need to let people be more aware of this disorder and that it is not something awful or horrible, but something people go thru and live happy and normal lives. I also belong to almost every eliplpsy group around! they are a wonderful support system when you need people who are going thru the same things you do. I love and appluade the Today Show for their work on what some people believe is taboo to talk about. thanks you again, god bless, Tisha Lane

Tiki Barber: Epilepsy in the Family

Debbie Hackathorn, Newton, Iowa — Fri, 14 Dec 2007 18:43:00 GMT

Please air a second story regarding seizures...ALL types of seizures. The Doctor on the segment stated that most seizures do not last for 5 minutes. My beautiful daughter began having Grand Mal seizures at the age of 15 and each one has lasted 5 minutes with convulsive seizing for the full 5 mintues. She has been on Keppra for the last few years but it is not without it's side effects. I would like more information regarding long term prognosis as she has recently married and will most definatly want to have children in the future.

Tiki Barber: Epilepsy in the Family

Cathy Skagerberg, Visalia. California — Fri, 14 Dec 2007 18:44:38 GMT

My family and the people that I work with all know what to do if i have a seizure.Put me on my side away from anything that can harm me, do not try to put anything in my mouth,let it run it's course. My first seizure was when I was 22. Was told by an E.R. Doctor it was a hyper-active thyroid.About 6 months later had another one,and had moved to a different state, was told by the E.R doctor after all the test they couldn't find out why or if i had a seizure and was sent home again, then had another one one month later.This time they put me in the hospital for 2 weeks.I had sleepy eeg,awake eeg,cat scans,spinal taps,you name it and still everything came back negetive.Sent me home said that it might not happen again even after 3 times.Less then month later was back at the hospital this time they took it seriously and sent me to a neurologist. I am now 51 and after starting me on my meds back then have been almost fine. I was told that most adults who have seizures and they can not find out why is listed as idiopathic epileptics.I take my dilantin and phenobarbital,but still about every 5 or 6 years I will have a grand-mal seizure.There are so many different type of seizures out there and I am glad to see any report on this subject.If just one person who read these reports and see that they have the very same symptoms and go see their doctor to confirm it would be great.So I want to be one of the people who say " Thank You" and hope to see more reports on seizure control and symptoms.

Tiki Barber: Epilepsy in the Family

Shelly Haugh, Canton Ohio — Fri, 14 Dec 2007 19:44:48 GMT

My daughter had not had a seizure since 2000 when she was 8 years old. We went through treatment with Depakote, then switched to Lamictal ( which seemed like a blessing) then slowly they weened her off the medicine. She had not had a seizure in all that time and had a normal eeg. We thought we were cured, that she outgrew it. Then 2 weeks ago we think she had another siexure, the new eeg showed some abnormality. More medicine, this time she is not responding well to it , she is drowsy, unable to focus and feeling paranoid. She was taking Keppra and now we are trying topamax. I am so bewildered and scared for her. It is so hard to know the right thing to do. I just want her to live a normal life. She is so bright a straight A student, a singing voice like an angel and without a doubt the light of my life. I am so afraid her life will be filled with a cloudiness from this medicine. Please keep up the good work and the research too. We need to make people aware. I hope and pray that some medicine will control this without making her a zombie. Itis a very difficult thing to undestand. Thanks for bringing it out in the open.

Tiki Barber: Epilepsy in the Family

Jody Littleton Colorado — Sat, 15 Dec 2007 03:39:07 GMT

I was so glad to see the piece on epilepsy on the Today show. It is amazing how it always takes someone of power or someone who is famous to bring awareness for more research to find cures for diseases, and this is one that truely needs it. I am a 53 year young women who had epilepsy as a child. I was diagnosed at the age of 8, starting with petit mal seizures and growing into grand mal, this all stemed from a head injury at the age of 5. I was told that I would grow out of it. I took depekene and tranxene all through my teen years and had my last seizure at the age of 25. The doctors always told me that this was just something that I had to live with, that there was nothing that could be done for it. I stopped taking medication at the age of 30, I felt very free and began to live a normal life. Two years ago my past came back to haunt me with a grand mal seizure and another one to follow it two hours later. Six months ago the same thing happend again. I have been taking lamictal and zonegran since the first seizure and they seem to help, but I think it is only a band-aid. I feel that we have to be proactive so I have been doing some research. I have found that hormone levels, thyroid levels, mercury levels even sugar levels in your body can trigger seizures. I have talked myself blue in the face with doctors, they all seem to look at me like I am crazy, they tell my they dont know what causes it and that there is nothing that can be done for it. Kudos to Tiki, maybe now more will be done for more research.
Jody

Tiki Barber: Epilepsy in the Family

Diana Roehrig Kalida Ohio — Sat, 15 Dec 2007 04:10:51 GMT

My family has lots of history with elilepsy, I am the oldes of 4 children and all of them but me have siezures. They were diagnosed in about 1968 or 1969. 5, 2 and 1 year old. they have never drove all these years. Which has made it difficult for them to hold jobs. My sister was somewhat of a slow learner and still seems a little bit younger. She still lives at home with my parents. one of my brothers is married with 2 children with no siezures. A lot of resposibility for his wife she has to do all the driving,,transport of kids etc. My other brother is my biggest concern at this point. He was living in Columbus for many years.. he damaged his shoulder from several siezures and had to have suregery a few years ago. the large city was actually good for him because he had mass transit. about 3 years ago he lost his job with insurance and move back home with my parents. Do to the fact that he couldn't drive made is really difficult to find someone that would hire him. Also the small town doesn't have public transpertation. He was working for about 6months when he had another grand mall seizure. He had it in the car as my mom was driving him home from work. She stopped and flagged down a police officer for help. Somehow he strained his back either during the seizure or when they were trying to get him out of the car. needless to say he was unable to go back to work at that time. It has been over a year now. At this time I feel he is very depressed.. He has tried to get some type of aid as he has no insurance, or job to pay for his meds. the interesting point here is that he has not had a seizure since he has not been takeing all of the meds he was on I believe 3 different kinds. He tried to get a doctor to help with the medisine all he said was you need a job with insurance... No Duh doesn't everybody.
I wish I could find something to get his spirits up to get on with his life. My parents are almost 70 and I worry what will my siblings do or go when my parents are gone. They are their only transportation.

One more thing I.. the one with no seizures has had 2 boys with seizures one out grew it , one stopped for awhile and started again when he was in Junior High he is still on meds and is a SR. My third boy has had many different tics through the years but they say they are not seizures.

Sometimes it is really easy for these people to pick up themselves and go with the flow. If you have not way to go to work or no one wants to hire you because of your problem and we all n ow that it is a problem how do they pay for meds etc.

Ideas and info welcomed

Tiki Barber: Epilepsy in the Family

Rebecca Flores, Newport Beach, CA — Sat, 15 Dec 2007 06:08:22 GMT

Thank you so much for talking about this very life altering disorder.. I have a 15 year old son who has grand mal seizures.. He had his first one at 13 years old. With No warning, he dropped to the floor, stopped breathing and went into full blown convulsions.. There is nothing that can ever prepare you for giving your child CPR, My heart stopped because he was always healthy and active.. Since then he has had too many to count and has never been the same.. There are so many things to look out for but one of those things I don't hear too many people talk about and what I would like to say parents is if your child has a possibility of having ANY type of seizures, PLEASE keep a very close eye on them when they are in or around water.. We are loosing too many children as well as adults to drowning in pools and baths because when they are having a seizure, no one can hear them when they are in the water.. Actress Tylo Hunter just lost her 19 year old son to him being outside talking on his cell phone near the pool, had a seizure and fell into to pool and drowned.. PLEASE don't take it for granted that even if they look healthy and okay that they are safe.. They are never safe around water....

Tiki Barber: Epilepsy in the Family

Ragan Freeman, Vicksburg, MS — Sun, 16 Dec 2007 00:05:03 GMT

I don't feel so alone anymore. My daughter, Kylea, had her first seizure when she was 8 months old. She is now 6 and still prone to have them frequently. I can think of at least 7 different medications that she has been put on over the years. She has had 4 different pediatric neurologists check her out and run their own test. We have been through 2 pediatricians. Finally I decided to take her to my family doctor. Her first time meeting him was when she had 3 seizures back-to-back in his waiting room!

I have been made to feel like I am over-protective by family and physicians. I have even had a couple of doctors say that I am making her do this! I have never been so insulted in my life. I love my children and it breaks my heart a little more each time one of them gets sick. I cried for hours after he said that. It made me feel like even more of an out-cast just because I am trying to get answers as to why my child has to go through this.

Since she was 8 months old, Kylea has easily had over 100 seizures. Peti-mal, Gran-mal, Febril, Focal, Tonic-Colonic, and a combination of any back to back. You name it, she has been through it. What's weird is that she may go months without any major activity and then BOOM! She goes through months of having them every 1-3 weeks.

I have finally caught some of them on video. That is what it took for one of those neurologists to change his A**Hole diagnosis of "breath holding seizures". Before he saw the videos he had started saying she was holding her breath and doing it for attention. What 4 year old (at that time) would know how to hold their breath long enough to send themselves into seizures?

I am a single mother with 3 daughters. I cannot work because I never know when I am going to be called to school to come get her. (She is even failing the first grade because of all her problems!) I have to pick and choose which seizure or illness is bad enough to warrent using a Medicaid visit to the doctor or E.R. Not to mention the fact that she has had as many ambulance rides as she has had years of life.

It's hard and depressing dealing with a child that has Epilepsy. Not to mention how stressful it is on the moms and the rest of the family. Every time I see the lifeless glare in her eyes, I wonder if she is going to make it through it. And when she does, I thank the dear Lord and pray it never happens again!

She has a sister 15 months older and a little sister that just turned 2. Although Ayden is only 7, she has been forced to grow up fast because of her sister's illness. And Taryn has only been near a few of them because they scare her so drasticly.

Thank you for the time. If anyone can relate to my experiences, pray for us.

Tiki Barber: Epilepsy in the Family

Emily, Dover New Hampshire — Mon, 17 Dec 2007 00:12:37 GMT

Thank you so much for talking about this. My 2 year old daughter was recently diagnosed with epilepsy and I think that it is great that this is being talked about. The more people are aware of the condition the better. We have a difficult time finding babysitters, playgroups, etc because people do not know a lot about the disorder and it scares them. Thank you so much for helping people become more aware.

Tiki Barber: Epilepsy in the Family

M. Windmiller Minneapollis, MN — Mon, 17 Dec 2007 01:09:03 GMT

My son at age 9 was susposedly had EPILEPSY, at least according to Childrens Hospital in Minneapolis. However now at age 28 he has no history of having any of the "tics" associated with this. He was on medication through out his school years but I am questioning this whole thing.

Tiki Barber: Epilepsy in the Family

Sharen Yurkewecz, Columbus, Ohio — Mon, 17 Dec 2007 01:11:12 GMT

Although your segment was informative, it did not address the horrible truth. Epilepsy kills, suddenly and unexplicably, 1 out of every 250 young people every year. I'd be curious to know if anyone on the panel is aware of this fact. Certainly Dr. Nancy Schneiderman is likely among the majority of medical practioners who prescribe to the "don't tell" philosophy. Otherwise, it would have been discussed. For those who are truly in search of answers, educate yourselves by visiting: www.raiseepilepsy.org, www.sudep.org. Let's work together to bring the "dirty little secret" out in the open!

Tiki Barber: Epilepsy in the Family

mom, Sacramento, CA — Tue, 18 Dec 2007 16:14:06 GMT

My 15 yr.old son was diagnosed with idiopathic epilepsy 3 yrs. ago. He had 6 tonic/clonic (grand mal) seizures before being diagnosed properly and achieving complete control of the seizures on medication. Other than some fatigue, he has no side effects from meds, gets mostly As in school and has no other problems with learning, personality or mood disorders.

Tiki Barber: Epilepsy in the Family

Michael, Greensboro, NC — Wed, 19 Dec 2007 14:48:10 GMT

Hello,
Unfortunately, we missed Tiki's segmment on seizures. My wife was involved in a motor vehicle accident 2 years ago and since, has had seizures which involve loss of ability to use her arms and legs, slurred speech, and inability to walk. During some weeks, she has had as many as four seizures. She is 36 years old and cannot drive due to this type of seizures. She was diagnosed as having "Non-Epileptic"seizures or "Psuedo-Seizures," and told to go to a Psychologist. Her health nor or seizures have changed in the last year and a half or since she began this treatment so, as you can imagine, she is VERY frustrated. Since she is unable to work nad she made a good income prior to this, she is on Long-Term Disability through a private Insurance Carrier. She is being treated for anxiety and depression, which have only been caused by the above illness. Instead, they are treating it as a mental illness and will discontinue her coverage in January, since she has reached her maximum 24 months. She is very unable to work since stress does seem to cause them (and this is caused by her anxiety that she will have a seizure in public, which has happened). Does anyone have ANY help or advice on what we should do? She is only getting more frustrated by the day and I don't know how to help! Also, do any of you have any advice what to do with the Insurance Carrier? PLEASE help and ANY advice would be most appreciated!

Tiki Barber: Epilepsy in the Family

Jo Taylor, Orem, UT — Thu, 20 Dec 2007 04:31:34 GMT

I am so glad that you talked about your epilepsy. I had epilepsy as a child. I outgrew them after about three years. I had a number of seizures, because no one seemed to know what was going on. I often wondered what effects it had on me as I have struggled with some things my entire life.I am not sure if it was the seizures, or other factors. I am so greatful that more is known about this disorder.

Tiki Barber: Epilepsy in the Family

john doe, seattle, washington — Fri, 21 Dec 2007 18:51:47 GMT

As someone who has experienced various types of seizures all of my life, including grand mal and partial complex seizures, I can say that epilepsy is like most afflictions in that everyone's experience is unique. More research and open discussion will undoubtedly lead to changing the way we currently diagnose and label it - it is so imprecise that most of us, even the ones who suffer from it, don't understand it.

Tiki Barber: Epilepsy in the Family

Amanda R, Aurora Colorado — Wed, 26 Dec 2007 18:15:17 GMT

What a wonderful service Tiki and The Today show has done for getting information to the public about Epilepsy. My daughter has epilepsy (she is 6 1/2) and A lot of times you feel alone because sooo many people do not understand epilepsy and what you and your family are going through. Please, don't stop getting the word out and letting people understand! Thank yoy Tiki!!!!!