Epilepsy Foundation

17 YO DAUGHTER RECENTLY DIAGNOSED...I NEED BADLY TO HEAR SUCCESS STORIES TO HELP ME COPE

I've been visiting the site for a while, reading, and trying to learn all I
can from others who are going through this.  My daughter was diagnosed this past
March.  She had a fainting spell in October 2010, which I now think was a
seizure, but the paramedics just called it a fainting spell because it was not
witnessed.  When I got to her, she was unconscious with a fixed gaze.  When she
came to, she could hardly speak, had bitten her tongue, and had a headache.  The
paramedics told me it was probably due to heat and going without food or drink
all day at work and recommended that I just keep a watch on her.  Shortly after,
in January, she was diagnosed with diabetes type 2 and had to take insulin
injections for a couple of months and then Metformin.  She was doing well with
her blood sugar levels and then in March, while driving home from school, she
went into a full blown tonic-clonic.  It scared me to pieces, as I had never
seen a seizure and had no idea what was happening.  I took her to the fire
department, which I had just passed, and they identified her as being in
postictal state.  They stabilized her, and I took her to the emergency room
where they suggested we see a neurologist.  We have no family history on either
side that anyone knows of, and this just came out of no where for a child who
has rarely even had a cold.  Before the neuro appointment, my daughter had 2
more seizures.  She has had an MRI and EEG, and the EEG was abnormal, so she was
diagnosed with epilepsy and put on Keppra, titrating up to 2000 mg (1000 mg
twice a day) over 6 weeks.  Keppra worked for 2 months and then the seizures
starting coming again.  After increasing her dosage to 3000 mg (1500 mg twice a
day), the seizures did not stop, so her epileptologist decided that Keppra
wasn't working for her and changed her to Zonegran (generic), titrating up to
300 mg over a 3 week period.  The plan was to eventually start weaning the
Keppra, but after her neuro appt, we decided to wait for 3 months to see how the
Zonegran works and then start the wean in October.  Things had gone well with
the Zonegran 300 mg until this morning, when she had another tonic-clonic.  It's
the first in exactly 1 month and 2 days.  She came out of it and was her usual
self and had not bitten her tongue.  In fact, I had to tell her it had
happened.  When I told her she cried, and it broke my heart into pieces. 
Everytime she has a seizure, my heart breaks because there is nothing I can do
to take it away from her.  I've lost 20 pounds worrying about her, and my blood
pressure is high.  I want her life to be as normal as possible.  She's starting
her Senior year in high school this year and planning to go away to college next
year.  I have so many fears, but I want her to live life and not let the
seizures control her, but I can't help but worry.  I also don't want her to get
into a state of depression over this.  For all who are seizure-free, please
share with me how many meds you went through before you found the right
med/dosage/combo for you.  Also, please tell me how long you've been seizure
free.  I know everybody's experience is different, but I read so many
not-so-great stories online, I really need to hear something hopeful right now. 
Thanks in advance everyone.  This site has been really helpful in educating me,
but now I'm feeling exasperated and in need of support, so I decided to tell my
story.

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I'm so sorry for what's going on with your daughter. The hardest thing to deal with is the shock and worry at first, I think.

My son had his first seizure (tonic-clonic) at school this past fall. Like you, we never expected life to throw a curve ball, but it did. My son was nine at the time, and the confusion was unreal. Since that first tonic-clonic seizure, he had them every 2-3 days, absence seizures every morning (no idea how many during school) and he also had complex partial seizures too. He had a CT which was clear, the MRI was clear but the EEG was messy, so he was started on meds. It all came on very, very fast. After trying keppra (doesn't work for him), and another med, we finally had success with depakote. He has been seizure-free for about a month and a half now! That's not bad for a kid who couldn't wake up without having a seizure for months. We have another increase coming next week so hopefully he will continue to be seizure-free.

 

I know what your feeling right now. It's the hardest thing I've ever been though too. You feel so helpless, right? It's normal, but It doesn't make it any easer. Try to find your local suppart group, and know how strong you are. Try to be positive for your daughter...she needs to feel normal too. Also, educate yourself on epilepsy, meds, side-effects, moods ect. and you will feel better. Hang in there and know we know just what you feel. Sending you lots of hugs and strength!

 

I also have to adocate for the family link thing. You may have seen my other posts, but in a nutshell, we found out there is a high rate of epilepsy in one side of the family. Epilepsy tends to skip generations (my son's great-grandmother had the samy type of epilepsy). If you wonder about this, my advice would talk to the older generations and ask around. It's just a thought. It gave me the closure I needed to move on so I could help my baby.  

 

Again, good luck and ask all the questions you can here! It'll help! Good luck!

I'm on 500mg x 2 times a day, 125mg Lamtical x 2 times a day

 

I started my seizures about 2 and half years ago. I had came home from a day at school (college) and I was talking to my cousin and then I had woken up with Paramedics giving me a sternum rub. So started the whys hows and the journey through to my freedom of seizures. I have tried dilantin, keppra, zongran, lamictal, topamax and depakote. Right now I've been seizure free 5 months on depokate and lamictal; I have tried lamtical may times the XR formula and regular pills with different dosages and with almost every medicine that I've been on, which is the only time I have been seizure free. I had seizures almost everyday, though not always tonic clonic, but still seizures. I owe my friends everything getting me through school since the medicines affected my ability to remember or learn at the same pace as everyone else. which I'm starting another semester of college in the fall. I have finally found a wonderful neurologist and a resident that have done  everything I needed, answered any questions and any information I didn't understand. We all talked different ways, different medicines that may make me seizure free. I didnt want to get on depakote because of the side effects which I am dealing with now; wright gain, increased hunger, hair falling out ( which lamtical had done before so put them together im surprised im not bald lol). Anyways I talked and tried to get myself informed with what is going on with me. I have no history of seizures or family history of seizures on both sides of my family as I know of, but they say that most cases cannot be explained. I gained and then lost a lot of weight the first year after I was diagnosed. I had lived in california and wasnt getting the answers or the care I needed. When I moved to NY where I am now I found the care I needed. Suggestions went back and forth between me and my doctors, I would ask your doctor on maybe doing an inpatient EEG in the hospital, they make her have a seizure and see whats going on during them. They 24 hour video her and a nurse is always around. That is what helped me and got me on the right track to these last 5 months. But before those 5 months I was getting the care I needed the changes in meds the seizures keep me frightened all the time. Not that I'm afraid to have a seizure but the pain, the concussions I have had, the effects of lack of oxygen or the possibility of choking on my spit or vomit and aspirating and causing lung problems scare me. Which are what anyone is scared of, but as long as you are proactive in the medical care she is getting. I have to say that the driving part puts a burden on not just the family. I drove before my seizures started, now depending on my family and friends really gets to me and them after awhile. I have great family and friends but it does get annoying after awhile.  

I would call and get together with your local epilepsy foundation. They have support groups and programs that make life easier and answer questions that other parents know or the experiences you have or might in the future come across. I went to the epilepsy foundations summer camp last year where I was a counselor and it opened my eyes to the different situations everyone has been through or is going through. There is people who have been going to that camp for 15 years the best decision for me, gave me confidence in knowing I really are not alone. I saw many many seizures and the first time I saw one it really scared me, to see what others see when I have one. The camp though does not stop just because someone has a seizure; they do horse backing, crafts, even stuff in the water, and  rock climbing of course with safety precautions, and very watchful eyes on everyone at all times. At least at my camp there is a neurologist and a nurse who give there time for a whole week for the camp. They help monitor the kids after seizures and giving adivan when needed. They do medication round up twice a day, no matter how needy the kids are with medications or even if they are special needs everyone can come to this camp, no kid is turned away.  It also creates bonds that last a lifetime, people who know what your feeling and have gone through the same experiences help the kids and even the counselors.

But keep your head up, keep hers up and even though its easier to say than to do but try not to stress too much because its effecting you and her and that could effect her seizures. I dont know what sets hers off, but I know mine are from my environment; stress, lack of sleep, not taking my meds, drinking (which I just turned 21 and had a few drinks thankfully I didnt have any problems other then all I can explain as a buzzing noise in my head even after a couple sips but it wasn't like I was buzzed or anything, weird I know). I know making a change in life is hard to deal with but you gotta roll with the punches. Keep her safe and your eye on her but let her go and do what she wants as a normal teen. I would talk to her friends, teachers, or anyone who is frequently around her about what to do if she does have one. Getting her a medical ID band helps too to know what medication, who to call if something happens the paramedics are trained to look for those, if she happens to be alone or with someone who doesnt know whats going on. I wore one everyday, never needed it but it was better for my safety and they have really cute ones around.

Everyone might be going through different situations but they have all felt the same thing you are, fear. I'll live with it my whole life but I put it in the back of my mind and put the effort to doing something positive and working with epilepsy foundation at camp and talking about what my almost 3 years have been like. Seizures, epilepsy sucks but its life now. Sorry if some of this is all jumbled I kept adding things after I wrote everything. Hope you found something helpful. You or her can email anytime j.pfeifer15@yahoo.com or facebook me https://www.facebook.com/jpfeifer6  I wish her and you the comfort of being seizure free soon. Hope and love are big things to rest on.

 

Judy

I've been in your daughter's foot steps.  I suffered from having Complex Partial seizures, which I started having when I was a year old.  I've been on almost every med that you can think of, such as Dilantin, Mysoline, Keppra, Neurontin, and many others, that I can't think of right now.  All of them were not working 100%. 

 

Seven years ago, I had four seizures within two days.  A couple of months later, the doctors suggested that I have surgery.  I went through lots of tests, and I ended up having surgery on my left temporal lobe back in 10/05, and have been seizure free since then.    I feel that I've been given a second chance on life.

 

Jeanne

Thanks A.C.!  Every day is a challenge.  I'm sitting here with her right now watching her from the corner of my eye.  I know I have to stop it and regain some form of normalcy.  I want her to stay encouraged and positive.  I will definitely look into support groups.  I don't think she's ready, but my participation may help her. 

Just curious, when trying a new med and your son has breakthrough seizures, did you contact your physician for every breakthrough?  My daughter has been on full-dose Zonegran for about a month and had 2 seizures yesterday without any triggers I can think of.  It makes me question whether the drug is working or not.  I felt something needed to be done like checking blood levels or increasing dosage.  When I call Emory to tell them about the breakthrough, I feel as if I'm overreacting.  In your experience, are breakthroughs normal at first when changing meds, even when you're on the full dose the doctor prescribed?  I would appreciate anyone who can answer this to tell me their experience.


A.C. said:

I'm so sorry for what's going on with your daughter. The hardest thing to deal with is the shock and worry at first, I think.

My son had his first seizure (tonic-clonic) at school this past fall. Like you, we never expected life to throw a curve ball, but it did. My son was nine at the time, and the confusion was unreal. Since that first tonic-clonic seizure, he had them every 2-3 days, absence seizures every morning (no idea how many during school) and he also had complex partial seizures too. He had a CT which was clear, the MRI was clear but the EEG was messy, so he was started on meds. It all came on very, very fast. After trying keppra (doesn't work for him), and another med, we finally had success with depakote. He has been seizure-free for about a month and a half now! That's not bad for a kid who couldn't wake up without having a seizure for months. We have another increase coming next week so hopefully he will continue to be seizure-free.

 

I know what your feeling right now. It's the hardest thing I've ever been though too. You feel so helpless, right? It's normal, but It doesn't make it any easer. Try to find your local suppart group, and know how strong you are. Try to be positive for your daughter...she needs to feel normal too. Also, educate yourself on epilepsy, meds, side-effects, moods ect. and you will feel better. Hang in there and know we know just what you feel. Sending you lots of hugs and strength!

 

I also have to adocate for the family link thing. You may have seen my other posts, but in a nutshell, we found out there is a high rate of epilepsy in one side of the family. Epilepsy tends to skip generations (my son's great-grandmother had the samy type of epilepsy). If you wonder about this, my advice would talk to the older generations and ask around. It's just a thought. It gave me the closure I needed to move on so I could help my baby.  

 

Again, good luck and ask all the questions you can here! It'll help! Good luck!

Thanks for your response, Jean.  What a blessing for you?  My daughter has generalized epilepsy, and the doctor's say she'll be on meds for life.  I don't think she's a candidate for the surgery because they don't know where the seizures start, or at least that's what they say from the initial EEG.  Congratulations on your new, seizure-free life! 

Jean said:

I've been in your daughter's foot steps.  I suffered from having Complex Partial seizures, which I started having when I was a year old.  I've been on almost every med that you can think of, such as Dilantin, Mysoline, Keppra, Neurontin, and many others, that I can't think of right now.  All of them were not working 100%. 

 

Seven years ago, I had four seizures within two days.  A couple of months later, the doctors suggested that I have surgery.  I went through lots of tests, and I ended up having surgery on my left temporal lobe back in 10/05, and have been seizure free since then.    I feel that I've been given a second chance on life.

 

Jeanne

Wow Judy!  Thanks so much for your response, and I commend you for your courage.  I had a talk with my daughter this morning about ways we could cope with this process of finding the right drug to control her seizures.  I think when she had the 2 seizures yesterday, she felt betrayed.  We both did.  It's so disheartening when something works for a month or two and then BOOM!  I know it's a process, but it's very difficult to see your daughter's heart broken over something you can do nothing about.  I will continue to encourage her to join a support group or at least read this site.  She says she's not ready yet.  I appreciate your encouraging words.  I pray you continue to be seizure free.  I asked A.C. a question above about breakthrough seizures.  Please let me know your experiences while trying to find the right meds and how you handled breakthroughs. 

Judy Pfeifer said:

I'm on 500mg x 2 times a day, 125mg Lamtical x 2 times a day

 

I started my seizures about 2 and half years ago. I had came home from a day at school (college) and I was talking to my cousin and then I had woken up with Paramedics giving me a sternum rub. So started the whys hows and the journey through to my freedom of seizures. I have tried dilantin, keppra, zongran, lamictal, topamax and depakote. Right now I've been seizure free 5 months on depokate and lamictal; I have tried lamtical may times the XR formula and regular pills with different dosages and with almost every medicine that I've been on, which is the only time I have been seizure free. I had seizures almost everyday, though not always tonic clonic, but still seizures. I owe my friends everything getting me through school since the medicines affected my ability to remember or learn at the same pace as everyone else. which I'm starting another semester of college in the fall. I have finally found a wonderful neurologist and a resident that have done  everything I needed, answered any questions and any information I didn't understand. We all talked different ways, different medicines that may make me seizure free. I didnt want to get on depakote because of the side effects which I am dealing with now; wright gain, increased hunger, hair falling out ( which lamtical had done before so put them together im surprised im not bald lol). Anyways I talked and tried to get myself informed with what is going on with me. I have no history of seizures or family history of seizures on both sides of my family as I know of, but they say that most cases cannot be explained. I gained and then lost a lot of weight the first year after I was diagnosed. I had lived in california and wasnt getting the answers or the care I needed. When I moved to NY where I am now I found the care I needed. Suggestions went back and forth between me and my doctors, I would ask your doctor on maybe doing an inpatient EEG in the hospital, they make her have a seizure and see whats going on during them. They 24 hour video her and a nurse is always around. That is what helped me and got me on the right track to these last 5 months. But before those 5 months I was getting the care I needed the changes in meds the seizures keep me frightened all the time. Not that I'm afraid to have a seizure but the pain, the concussions I have had, the effects of lack of oxygen or the possibility of choking on my spit or vomit and aspirating and causing lung problems scare me. Which are what anyone is scared of, but as long as you are proactive in the medical care she is getting. I have to say that the driving part puts a burden on not just the family. I drove before my seizures started, now depending on my family and friends really gets to me and them after awhile. I have great family and friends but it does get annoying after awhile.  

I would call and get together with your local epilepsy foundation. They have support groups and programs that make life easier and answer questions that other parents know or the experiences you have or might in the future come across. I went to the epilepsy foundations summer camp last year where I was a counselor and it opened my eyes to the different situations everyone has been through or is going through. There is people who have been going to that camp for 15 years the best decision for me, gave me confidence in knowing I really are not alone. I saw many many seizures and the first time I saw one it really scared me, to see what others see when I have one. The camp though does not stop just because someone has a seizure; they do horse backing, crafts, even stuff in the water, and  rock climbing of course with safety precautions, and very watchful eyes on everyone at all times. At least at my camp there is a neurologist and a nurse who give there time for a whole week for the camp. They help monitor the kids after seizures and giving adivan when needed. They do medication round up twice a day, no matter how needy the kids are with medications or even if they are special needs everyone can come to this camp, no kid is turned away.  It also creates bonds that last a lifetime, people who know what your feeling and have gone through the same experiences help the kids and even the counselors.

But keep your head up, keep hers up and even though its easier to say than to do but try not to stress too much because its effecting you and her and that could effect her seizures. I dont know what sets hers off, but I know mine are from my environment; stress, lack of sleep, not taking my meds, drinking (which I just turned 21 and had a few drinks thankfully I didnt have any problems other then all I can explain as a buzzing noise in my head even after a couple sips but it wasn't like I was buzzed or anything, weird I know). I know making a change in life is hard to deal with but you gotta roll with the punches. Keep her safe and your eye on her but let her go and do what she wants as a normal teen. I would talk to her friends, teachers, or anyone who is frequently around her about what to do if she does have one. Getting her a medical ID band helps too to know what medication, who to call if something happens the paramedics are trained to look for those, if she happens to be alone or with someone who doesnt know whats going on. I wore one everyday, never needed it but it was better for my safety and they have really cute ones around.

Everyone might be going through different situations but they have all felt the same thing you are, fear. I'll live with it my whole life but I put it in the back of my mind and put the effort to doing something positive and working with epilepsy foundation at camp and talking about what my almost 3 years have been like. Seizures, epilepsy sucks but its life now. Sorry if some of this is all jumbled I kept adding things after I wrote everything. Hope you found something helpful. You or her can email anytime j.pfeifer15@yahoo.com or facebook me https://www.facebook.com/jpfeifer6  I wish her and you the comfort of being seizure free soon. Hope and love are big things to rest on.

 

Judy

I'll try to make it short and sweet. At 14 and 16 months of age I had two febrile seizures, of course the doctors thought nothing of it because lots of infants have seizures brought on by fevers. They sent me home. I didn't have another seizure until I was 8, in 3rd grade, a grand mal (more recently known as a tonic-clonic). Again, it could be nothing so I went home. Then fourth grade came. I started having multiple types of seizures; grand mal, complex partial, absence. From fourth til the end of  sixth grade I struggled with seizure control. We found a good combination that controlled the seizures during seventh, eighth and ninth grade. I believe it was the week before tenth grade that I landed in the hospital because I had a grand mal. From tenth to twelfth I struggled with control again. Junior year I was taking 42 pills a day, let's just say nobody sees my senior photos. When I landed in the hospital twice in one week one of the interns/residents (not really sure) asked my parents why we weren't in the city ( NYC). That's when we started the road to surgery. We met with an epileptologist who agreed we should see if I was a candidate for neurosurgery. I spent 8 days having a VEEG, ironic right, it took eight days to have a seizure. The location my seizures were originating from was easily located. I had neuropsych testing (you have to in order to have brain surgery). I had been on ten drugs by the time I had brain surgery in Dec. of 2006, and have been seizure free since. My doctor always claims I was the perfect candidate and finds it unfortunate that neurologists still see surgery as a last resort. He moved three hours from the hospital I had my surgery at, which was less then an hour from my house. He made such and impact on my life that my mom and I travel that far to see him twice a year.

Best of luck with your daughter.

read the post this friday 5 yam... its a very encouraging post
sorry to hear what your going through.  My Daughter isnt a success story yet but i know one thing that helps older kids is seizure dogs.  It helps them still have independence.
she was hit with a double whammy with diabetes and seizures . I was wondering if her diabetes the main factor in her seizure activity ?? Maybe she should consider a special diet and strict blood sugar monitoring it may reduce the seizures . If she knew what level her sugars fell or went up just prior to a seizure she may get a idea the range of numbers she should stay within to keep seizures away . Some people get hypo or hyper glycemic  within the usual normal numbers like 6-8 mmol . Some people do better on insulin than pills for blood sugar control also as the pills have side effects too or they not keepin sugars in range .

Tameka

So sorry you and your daughter are going through this.  I remember all too well the fear and anxiety you are going through.  My daughter was just diagnosed six months ago.  She was also tried on keppra at first - and went from having one seizure every other week to several seizures a day.  It was so disheartening.  I felt like I was losing her.  I lost fifteen pounds in the first two weeks (I am thin to start with - I became downright gaunt!)  I am happy to say that after much tweaking (and MANY calls to the neuro's office and MANY hospitalizations) - she is now well controlled on two meds.  Almost three months seizure-free.  There is light at the end of the tunnel.

 

Did they give you the name of the type of epilepsy she has?  Just wondering because they have learned so much about epilepsy syndromes and which meds work best for which syndrome.  I would push the neuro for a concrete diagnosis.  Also, I am a big believer in going straight to an epileptologist, if you have access to one.  At least until things settle down.  They deal only with epilepsy.  Some neuros are great - but it's more variable.  There is a thread somewhere on this website about good epi's.

 

Just curious - do her seizures correlate with blood sugar levels?  It seems so odd that both things should hit at once.  I'm just wondering if one is cause (diabetes) and the other is effect (seizure).  Both hyper- and hypoglycemia can cause seizures (even if a person does not have epilepsy) and certainly, in epileptics, it can make seizures worse.  It is more common during bouts of hypoglycemia, but can occur with hyperglycemia, espcially if someone is predisposed. 

 

Don't be shy about calling her neuro with every seizure.  I called EVERY time.  Even at night and on weekends.  To me, a seizure is a medical emergency.  My neuro's receptionist knew me by voice - she was so sick of my calling.  BUT, they did make a change with every seizure and finally got it right (fingers crossed!).

 

Good luck and hang in there.  It can get better.  Life may never be exactly the same - but you can find a new normal. 

 

Jennifer  :)

Thanks Emily.  We have a family dog, not really trained as a seizure dog.  I've thought about having him hang out in her room at night.  She's never had a seizure in her sleep, but I think about it all the time. 

emily shepard said:
sorry to hear what your going through.  My Daughter isnt a success story yet but i know one thing that helps older kids is seizure dogs.  It helps them still have independence.

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