Hi! What a sweet story. You sound like such a wonderful family. I really understand your confusion right now. I was just diagnosed a few months ago. However, my one seizure happened right in front of my precious, sweet little girl. It really traumatized her. It happened in a Walmart and I split my head open, so there was a lot of blood. I was knocked out cold too.

We have dealt with alot and we have perservered! My husband, daughter and I have always been a tight unit, but this has kept us joined at the hip:-D

You will learn a lot, as I have, and your little angel will live a completely normal life. Be patient as far as her medication is concerned. It may take a bit to get that right. She will have a perfect life and be able to do what any child does!

It will be less shocking as time wears on. I learned that over the past 1 1/2 years.

 

Keep the faith and I am proud of you for posting your story!

 

Fishy

 

Hi,  I just wanted to say that having epilepsy is not easy, not for the person having the disease and neither for the people around them.  I'm 19-years-old and i suffered from epilepsy.  My case was rare, and the first 4 years, doctors couldn't figure out what was wrong.  At night, amost every night while i was sleeping, my attacks or seizures started, i felt scared, i wanted to scream but i couldn't talk but my parents were always by my side, holding my hand and telling me everything was going to be alright.  I felt so bad because i couldn't understand why that was happening to me. 

About 2 years ago, my parents took me to another hospital to get a diagnosis that made sense and to seek treatment, the took the EEG test and that is when they told me i had epilepsy which at that time i didn't know what it meant. 

On December 2006; the doctor put me on treatment, for one more month, i still couldn't sleep right, but by the middle of January, the seizures were gone.  Since then i haven't suffered another seizure and i'm still taking my medicine.  When i look back at what happened to me, i feel sad but suddenly i feel better knowing i had someone next to me telling me to be strong and to hold on.  My parents were and still are there for me.

It is good that you as parents want to be informed about your daughter's condition but never make her feel different from anybody else, just be strong for her because she will need you.

I don't really know what is going to happen but if treatment's working for me, it can work for your daughter, just have faith like my family did.  I thank God for blessing me and taking all the bad from my life for almost 2 years now.

I hope that your daughter gets better, i wish you all the luck from my heart.  God bless you and her.

Hi! I take Keppra, and it has been my miracle drug along with Topamax. The Keppra dose is on the higher side, but after years of uncontrolled seizures, and countless medications, I finally found the right combination. I'm 27, had a great, healthy little girl in 2004. No complications at all. And my last seizure was 4 years ago due to lack of sleep and accessive drinking. Now, the really positive news....I'm following my dream tobecome a therapeutic riding instructor. I'll be in school from 8 a.m. to 8 p.m 5 days a week. I feel fine. Healthy, my seizures are under control. The one thing I learned to do about my particular seizure disorder is listen to my body. I can tell when a seizure is going to come or even whena cold is going to come days befor it comes. Take time to nurse yourself back to health. And, it may seem like the end of the world for your daughter and your family. I was involved in therapeutic riding lessons, and they made me feel so much better. I interacted with horses, rode horses, made friends, volunteered when my seizures were controlled, gained confidence. It's great for someone her age.

                      hello and welcome to the site

                     can tell you that i was diagnosed at age 17.from age 17 to around age 20 ive had some almost daily gran mal seizures "age 34 today" ,ive read many books as well as being on the internet through that age.one day something came across my mind,"why not go over three years of medical records at age 20.i went over them and found out alot of certain things pertaining towards my health.then my research kept going,seemed the more i read,the more questions i had for my neurologist.things changed,seizures were much less due to my self education on side effects,interactions,as well as how they started which is still unclear at age 34.slowly things came to a halt for five years i had total controle and no seizures.somewhere in my mid twenties seizures came back but were only once or twice per year and i dont think i had any more gran mal seizures,they were mostly partial seizures.durring my controle period i decided to start going to community college where i gained 48 credits,though at age 32 seizures became more severe,neurologist said i became immune to the drug Tegretol.had to switch meds and things slowed to about two to four seizures per year.had no choice but to withdrawl from classes for that period and still havent went back due to family problems as well as legal problems that came with my seizures.

                things did slow me down but with posativity,my educational life took a turn.i thought"why wait on community college while credits will always be there?" then enrolled in the art institute www aionline,edu.where im working now on earning an online degree while those credits sit behind.i have posative feelings that i will earn a degree this way while seizures are here but medications are comming out everyday i read in the news which is great!anyhow,thats likegoing for a drive someplace far and the highway(community college) is covered with snow and i couldnt get by.somehow i made the choice to find an alternative rout to bypass the danger while my road seems clear now.

                         i figure that in the winter or spring of 2009,if things are back under controle,then ill take that highway back home,ill have one degree in my pocket but i wish to enroll back in community college in 2009 in order to finish what i started with a bunch of credits already waiting for me there.when finished ill have two degrees.

            it all depends on a persons age when they start i guess?the younger,the better.most say have fun while your young,i would rather have my fun trying to better myself so maybe one day i would be able to help others in the same boat or worste?with two degrees,where will that bring me?i thing i may be able to get very far and at the end of the whole education.i will have a career that is safe,secure,and very posative.

                           maybe ill have my fun later in life?ive had fun as a younger person but that stopped when i enrolled in community college.decided to abandon 98% of all friends and fun for an educational goal in life.seems like its working so far.best i can do is update you when i graduate.

                                      is it worth it?well,ive had a great neurology team whom wouldnt let depression overcome my emotions.ill never forget how the first books i read on epilepsy myself came from a couple neurologists and they educated me on how to educate myself as well,they treated me like family.

                        theres one thing i cant forget.my neurologist kinda shed light on a path in the beginning on others with disabilities.ended up volenteering for years for parapaligics,peop[le with parkinsons,and disorders that were much worste than epilepsy.somehow that lit my heart up for those people.maybe thats how depression never overcame me?but i promise that if i do earn both degrees,i will dedicate my life towards any and all with disabilities throughout the rest of my life.

                              havent volenteered for a year due to educational plans.but afterwards,i think my goal in life would be heading in a very posative direction with two degrees in my bag and possibly working$ to help those less fortunet.                

                               All i know is i had a neurology team who never let me down and wouldnt let me let myself down,somehow it all came together and i think ill owe them alot for what they did for me and how they cared for me.not all neurology teams are like that though i read.either i did my share of research and it worked out,or someone helped put a great head on my shoulders,which ill never forget.

                                                              Bob

 

I completely understand where you and your daughter stand.  I know from what I see in my job as well as what my family encountered with me, the first year of seizures is always the worst. I was diagnosed with Epilepsy at the age of six months (I am now 22) and went through some good and bad times. Just in case you wonder, I have Complex Partial and Secondary Generalized seizures. I must say, there were a lot more good times. I am currently on Keppra also along with Carbatrol and  the Ativan to serve as a sleep aid since the keppra makes me a little hyper. I must say, I have been on over a dozen different medications for the seizures and the mixture of Carbatrol and Keppra has been so successful that it has let me get through and graduate college and get my bachelor's degree in Nursing. Before I was on the Keppra, I was having anywhere from 15 to 100 seizures a month. I actually took the good side of having seizures and went into the field of neurology to work. I know it's not something you want to hear but it wasn't until January of this year that they were actually able to find the cause of my seizures. I must say the technology has improved SOOOO much since I started having them, and there is a great outlook for your daughter. I work in a hospital myself and help people who have seizure disorders in any way possible. I always tell our patients, "use the condition to an advantage", which is what I did by becoming a nurse in the neurology sector. I was even offered $55 an hour before I even graduated to work for a hospital in their neurology department but turned it down since I wanted to stay closer to home. One thing to remember is "if you ever get the feeling that you're not being helped by the current neurologist, GO FIND ANOTHER ONE." I t may sound like a good thing or bad thing but I actually had to go through five different neurologists and defy my parents to get the successful treatment. You may switch neurologists a couple of times but you'll eventually find the right one. Just don't give up on the treatment. If it even comes down to it, try and find a university based hospital with a neurology sector. I had to do that in order to get proper diagnosis and treatment. I know I have to travel more than two hours to get to UT Southwestern Medical Center in Dallas, but in my view, it is well worth it. If you have any questions about seizures or treatment, you can e-mail me at shawn@tcvfd.org. I love to help people whether they are friends or strangers in any way possible.

I am very sorry to hear about your daughter's diagnosis. I am also very sorry to hear that you have been crying for days and weeks over her diagnosis of epilepsy. Although it is true that epilepsy can be a challenge, each case is individual. Some people have difficulties on medication and with seizure control, others do not. I think that there are many things in life that challenge all of us.  That is part of being alive.  Your love and support will help your daughter immensely no matter what the future holds.

I have a friend who has had epilepsy for over thirty years.  She had her last seizure over twenty years ago. Although she does take medication, she drives, works, and is married and has two beautiful children. Her life is not defined by her epilepsy any more than my life is defined by my taking high blood pressure medication.  I also know people who have active seizures but stil manage to live very active, "normal" lives.  Even if your daugher has active seizures, it does not necessarily mean that she cannot have a very full life.

I hope everything goes well for your little girl and for you. Remember that if you need support, you can always come to this site.

 

Wow! You are doing EVERYTHING you are suppose to be doing!  I am pretty new to "E" as my daughter has only been diagnosed for 2 years. She also had no trauma or injuries.  I have spent alot of time crying, praying, crying- A huge amount of anger at God and There are moments when I still feel that way .  BUT...  A gal on my blog told me something I haven't forgotten..."Your daughter is as beautiful now as the day she was born"  You will go thru some rough patches but you are becoming a better person for it.  When the shock wears off- you go into a "handle it" mode.

So, your daughter has epilepsy! You can't change it!   It affects your life no matter what-  but it does not define her heart ,who she is or who she will become. 

You may have to deal with different medications, second opinions...whatever is thrown at you.  Remember always- she is "your girl"  You have the right to ask questions and to find the doctors you feel comfortable with. 

My daughter plays varsity soccer- has good grades and though she's hit some rough spots recently- she does bounce back. I'm a big one to talk- if you read my blog- you'd be amazed how similar we feel.  I have decided that I will not let my fear control me nor will I let it control my daughter.  These girls "are beautifully and wonderfully made"  Good Luck.  You are in my prayers---Jayna

just wanted to welcome you and your family to our site...............i am so sorry to hear that sammie has e but it can be controlled and she can have a normal life........it was hard on my parents as well .....i was dx at 16 and i had grand mals and petit.......but through proper eating and sleeping and getting the right meds ....i pray that she will be fine........i know it's hard on everyone but just take it day by day and before you know it she will be graduating........take care and god bless .......scratch

I feel as you do and hope you will keep us posted...I just had two of my four children diagnosed in sept and oct 07 and share all of your emotions.  We are supposed to expect our younger two also to be diagnosed down the road.  I try to think of this as our little struggle.  I pray alot and thank God for the many blessings in our lives and for the health we do have and that we are all together.  I ask God to be with us and just please not take my babies away from me.  I believe in my heart that God sent your daughter to you because he knew what a fantastic job you would do taking care of her.  She is destined for great things someday and he knew you would be sure to help her through all of this.  Crying is an important part of the process ... as important as acceptance.  Be patient with yourself and remember what a great mom you are.

hi, i just wanted to let you know that it is important to treat your daughter no different then you would otherwise. i have had epilepsy all my life, and as a child, i would take my zaron tin as it was given to me and played with siblings and friends as any other kid did. there was nothing different to separate me out except i happen to take meds a couple of times a day. i had a great normal childhood which i dont think i would have had if my parents would have been overly protective or contstantly worrying about me. right now this is extremely new to you, which in the beginging, it took my parents quite by shock they told me. they thought i was just a daydreamer type of kid but then found out it was abscence seizures when i started school and they called them to have me checked out by a doc. so yes it took them a little while to adjust butwere determined to let me be a regular little girl and with 3 siblings that probably was hard at first since we played hard  all the time.

turns out many years later, i have been diagnosed with primary generalized siezures which is heretitary and it took a lot of looking through the family trees to find where it came from. the epi spec i see know at 49 is the one who finally diagnosed it throuh all the new modren technolegy they didnt have back then. my poor mom thought it was something she did or didnt do, though the docs told her that it was just a fluke of nature back then. it is not unusual to not find it in the family trees at all since up until recently, people hide it like the plague, the person in the family was always refered to as having some other disease or mental breakdown or the such. the only reason i found out is my dad remembered reasontly that his little sister who died at about age 13 of lukemia use to stare off into space alot as a child and not talk or anwser you when she did this. with out this info we would never had known either which side it came from. though there are other relatives that going back on his side no one ever spoke of or it just says they lived then died. it is indeed a blessing that we live in a time that epilepsy is more open and so many people you talk with will say they know someone or are related to someone with epilepsy. there still are some naive people out there but slowly we will educate them all.

God Bless,

banffgirl

life is fragile, handle with prayer.

I have had epilepsy uncontrolled since the early80's. In July of  07 I had a neoropace stimulator installed into my skull. With several visits to the hospital, I am seeing a significant reduction in my seizure activities.  Iwould like to see if there is anyone out there who has had this device installed and would share on this forum there progress and encourage others like myself that there is hope on the horizon.

 

Hi Onemarvy, My name is Miriad and I am from Ireland. I am now 27.
I started having seizures at 11 months old. I was disagnosed with Peti Mal Epilepsy at the age of 4. I was on a lot of drugs from a very early age. I finially was put onto a drug called Tegretal which partially controlled my seizures. As I got older my seizures got worse around my time of the month etc. I finally took action when I was 25 and decided to go forward for Brain surgery and in January 2007 I had the operation. I am now seizure free 13 months. So there is hope out there. Your daugther might be a lot luckier than I was and will get her seizures under control with medications. I suffered with Complex Partial Seizures and unforunatly mine are a lot harder to control with medications. But Please god your neurologist will work with you and her husband to get ur daugthers seizures under control.You will be in my Prayers. God bless Miriad

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