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Tiki Barber: Epilepsy in the Family

Posted: Thursday, December 13, 2007 10:05 AM by Dan Fleschner
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This morning, Meredith moderated a panel on epilepsy with Dr. Nancy Snyderman, Susan Axelrod, the founder of the epilepsy advocacy group CURE, and Tiki Barber. WATCH VIDEO

Tiki and his twin brother, Ronde, suffered from seizures as children, and Tiki's older son, A.J., has had about 10 seizures, generally brought on by high fevers.

Before the segment, we talked about his family's history of seizures and what parents can learn from his experience:

DF: How old were you when you had your first seizure?

Tiki Barber: I think I was one when we -- talking about me and my brother -- had our first seizures. I don't know if it's genetic or coincidence, but we would always have them at the same time. So my mom was always extremely stressed about it.

Back then, they didn't have a lot of ways to treat it other than to pump kids full of phenolbarbitol. If you've ever seen a kid on phenolbarbitol, it's like he's a walking zombie. So they've come a long way.

We eventually grew out of it, after we were six or so. I have no lasting effects from it, but having seen my kid go through it, it's not easy.

DF: So you have no recollection of going through it as a kid?

Tiki: None. But my mom used to say that she'd thrown us in the pool when she sensed us getting to a certain point. And I remember always being at the pool when we were younger. That I remember, but I don't remember going through an episode.

DF: Before your older son, A.J., had his first episode, had you talked about the possibility of him having one with your wife?

Tiki: I think Ginny knew that I had had them. But it wasn't anything in my consciousness, because my son was past where I had started having them. Then one day, we were laying in bed together, and I could feel him getting hot, because it was making me hot.

So I moved him to another room, and 30 seconds later, he went into a seizure. I picked him up and ran downstairs. Luckily, we were only a block away from New York Presbyterian, so we took him there. He came out of it quickly, but it shocks you to see it.

DF: Has he had any since then?

Tiki: He's had probably 10, and by definition, he's epileptic. But it's only by definition. He doesn't have some of these lasting conditions that epileptic people have: memory loss, cognitive issues with development, etc. His condition is febrile, meaning in the presence of fever or when he's about to spike a fever; when he goes from normal to 102 in 10 minutes. He's predisposed to having a seizure, as I was predisposed to it.

Anyone who gets a very high fever can have a seizure, but some people are predisposed to it. I was, my father was, my brother was, my son is. But we grew out of it, and we're hoping that A.J. will grow out of it.

DF: Have you talked to him about any of this?

Tiki: We've talked about it, but he doesn't remember. He knows he was sick, but he doesn't know what happened. The only time we got scared was when I was actually playing in Philadelphia. It was the first game of the season, four years ago. He just fell over. It wasn't a convulsing seizure, and he got up after 10 seconds. But he was just in a daze.

Ginny knew something was wrong, so she took him to the hospital. Thirty minutes later, he went into a tonic seizure when his temperature spiked. That one scared us, because there was no fever when he had his first seizure. But it clued us in to the fact that we can tell when he's gonna have an episode.

We were in Hawaii for the Pro Bowl at a players' luau, and he just started to zone out. So we ran upstairs, put him in the bathtub with lukewarm water, and luckily we were able to control it by controlling his temperature, giving him motrin and tylenol. We always have to be aware, because you never know when it's going to happen.

Like I said, it's not dangerous, but you don't want your kid sitting around having a seizure.

DF: Now that you're talking about this more publicly, what do you want parents to take away from your story?

Tiki: I think parents need to be aware, because any kid can have a seizure. A lot of parents will see their kid have a high temperature, and they'll think, "Oh, it's just a temperature." But you never know when you're predisposed to having this disorder, so you have to keep an eye out.

But also, there's a stigma that comes with this word "epilepsy." I don't want to say that it's normal, because it's not normal, but it's just like any other condition. It needs to be researched, there needs to a cure for it, there needs to be awareness about it.

If someone had a seizure right now, would you know what to do? Most people wouldn't. It affects a lot of people.

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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!  :-)
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.
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.  
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!
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.
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 !
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.
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!
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.
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.
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 !!!
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/

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.
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.  
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
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.
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.  
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.
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.  
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.
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.  
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.
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.
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.  
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.
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.  

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.  
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!
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.
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!
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
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.
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.
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.
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.
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
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
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.
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.
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.
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
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


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....
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.
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.
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.
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!    
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.
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!
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.


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