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Greeting to everyone in this site.

This is my first time to post. My wife and I just found out today that my kid has epilepsy. He's turning seven this year and all along we thought that his seizures were nothing serious. Until his school teacher suddenly woke us up and told us that she also noticed his seizures a couple of time already. My wife went to the hospital this morning and the doctors confirmed he has it. He'll be undergoing his EEG's and other things starting on thursday.

It's just a shock to me right now and my wife and I cried while we were talking on the phone. I don't know what to do. My wife is losing hope and I told her not to... I said to her that there's a lot of people who has epilepsy and still manage to live normal lives.

Maybe I'm just thinking too far ahead. I'm worried about his school, his teens and his adulthood. I really don't know what to say. This is the most painful time in our lives and I don't know how to help my kid and ease his and our pain. I joined this group in hopes that you can offer me some help. Like I've said, I'm new to epilepsy.
Hi NewGuy and welcome to CWE :) I am new to E as well, although I am 28 and was just diagnosed a couple months ago. I would think it depends on what type of seizures, how often, how they're managed, and most of all ATTITUDE. If you let it defeat and define him, it will. If you don't, it won't. There is a tremendous amount of information and support here and I hope that you feel welcome here. Everyone is always ready and willing to help out and answer any questions and help point you in the right direction! (Just wandering around and reading old posts has taught me SO much in the short time I've been here!) Welcome aboard and I hope this forum and we on it can help you....
I've always wondered what parents go through with a kid who has epilepsy. Now I know why my mom has high blood pressure.

It's best to take this one day at a time. My childhood was both happy and sad. Epilepsy was a mere inconvenience during recess or some other interesting activity. The trick is to try to help your kid adjust to the epilepsy. Personally, I grew up with a dog who was a really goofy, funny cocker spaniel. I learned responsibility by walking and feeding him. He was my best friend as is my current border collie mix.

The one thing my parents did was stay involved pretty heavily in my education. I hold several degrees, work full time (today's a day off) and am owned by my border collie who runs my house. Driving, or a lack of it, is just a mechanical issue. My seizures, with the right mix of medication, stress management, good health and lifestyle were frequently well controlled. A lack of transportation forced me to find other venues of entertainment.

Oh, and by the way, I drive now. I'm not normal. Never will be, even if epilepsy is gone from my life. I try to be sensitive to others with handicaps as well.
Many Thanks...

Thank you very much for your kind advice about my kids E (as Graidyn calls it :)). It's really great to find help here in CWE. Even my wife and I have found it really difficult to cope up with our current situation. I think I've read more about epilepsy the past 24 hrs compared to any other book I've read in my existence.

I just have one question to you guys (especially you aliveandwell). Will it be possible for my kid to experience a normal life when he grows up? And can you give us an advice on how you managed to minimized (if not totally erased) the seizures especially when you were younger?

I'm really amazed since you sound like your a very active person in real life, plus you hold several degrees.. I really want to encourage my kid and the rest of the family to fight the disease and not get beaten by it...

Thanks guys..
Hiya NewGuy

Welcome to CWE

You couldn't have found a more friendly or informative site to learn about epilepsy. I am sure you will get a lot of the answers you are seeking and plenty of support for yourself and your family.

I have had E since I was 10 years old and it hasn't held me back at all, I have a very good job and I spend my spare time world travelling, I do everything I want to do.

I have daily absence seizures, which are more of a pain in the butt then anything, the only area in which they interfere with my life is that I am not allowed to drive, apart from that I live a crazeeee normal life.

Take care

The Crazy Monkey
Hi NewGuy! Welcome to CWE. :) Well, let's see about some of your questions...You said that you really hadn't considered the seizures much until the teacher mentioned seeing them too. So, I'm assuming that your child doesn't have grand mals (tonic clonics)...they're the ones that movies and TV usually show with a person falling to the floor, frothing at the mouth (I've never frothed at the mouth..I still wonder why they show that...), and their muscles twisting and convulsing. (I have these. :) ) So your son has a different form of epilepsy. Some can completely escape notice. If you saw it, it would look like your child just staring off into space daydreaming...Others are a little more noticeable with an occasional twitching spasm or loss of conciousness and repetetive movements. These are just the ones I've read the most about...they certainly aren't the only ones. So first of all, don't feel bad.

Ok...now as to your concerns about how will this impact your son. Honestly, I think that depends on him and you, the parents. There are people at this site who have many different types of seizures, take multiple meds, and have other medical conditions. But they view life as a glorious challenge. Something to be embraced head on. And they have managed to accomplish quite a bit. Education, marriage, career, etc. Other people I've met, they viewed it as a death sentence, and just kind of gave up. They didn't socialize with others, and just kind of faded into their own little worlds. How your son will view his epilepsy will be determined by his life experiences and how he sees those around him whom he loves cope with it.

For example, when I was little and had seizures, my mom would freak out and when I came to she'd be hovering over me, occasionally crying, but definitely looking stressed out. I always felt guilty for making her feel that way, and so to this day, I feel guilty about having the seizures. (and yes, even though mine are controlled quite well, I still on occasion have ones that breakthrough.) My dad on the other hand would be smiling, and crack a small joke (Let me guess, you had a math test today.. :). He'd help me to the car, and drive me home, tuck me into bed, and give me a kiss on the forehead. I never felt guilty with him there...just safe. Might be why I love my husband so much. :) He reacts like my dad. :)

Now, there were some restrictions that I had that other kids didnt' when I was growing up. Such as no swimming alone. Which was fine by me because swimming alone really isn't a whole lot of fun anyway. I had to wait a bit longer to get my driver's license (21) but I got it. :) My mom and dad never let epilepsy be an excuse for poor schoolwork, so I got good grades and went on to college. From there, I got an advanced degree, made lots of friends (it's much easier in college and grad school, as they tend to react more maturely then kids in elementary and middle school. Although I always did manage to have at least 3 or 4 friends when I was young. With the younger classmates, it was fear that made them avoid me.), entered my career (I work as a schoolteacher, and yes I have on occasion had seizures in class...my kids were fantastic and supportive.), got married, and am expecting a child. :) I still drive, although that's been cut back abit due to pregnancy...and I have some marvelous friends. So honestly, I wouldn't worry about your sons future right now. :) My sister-in-law is a Doctor at a pediatrics hospital, and also has seizures. My classroom aide also has seizures. And you never would tell by looking at any of us. And yes, we all drive.

Right now, you're best bet is just reading up. Find out the information. Information is power. The more informed you are, the better you can help your son and wife. :) So here's some basic info.

First of all, epilepsy is not that unusual. It's just not talked about much. It tends to stay hidden. I'm going to give you USA statistics, as I'm not sure about statistics in the Phillipines. In the US, the Center for Disease Control did a ten state study. They found that 1 in 100 people had epilepsy. That's alot of people if you think about it. Currently in the US there are approximately 3 million people with this medical condition, with approximately 300,000 new cases diagnosed each year. Migraines have recently been reclassified as a form of epilepsy.

Second, read the Epilepsy 101 thread in my signature. It gives some great info on the different kinds of seizures.

Third, if your son ever does have a grand mal, just roll him onto his side, do NOT stick anything in his mouth, move everything away that he might hurt himself on, and try to keep a track of how long the seizure lasts. If it goes over 5 minutes, call an ambulance. Hopefully you'll never need to use this particular piece of info, but if you do, I hope it helps.

So, what to do in the meantime. First of all, remember that he is your son. He is no different now than he was 2 months ago. The only difference is that now you know. It's better to know and be able to help, then to now know and have no clue about how to help. Try to think of epilepsy as being like asthma or diabetes. It's a medical condition that can be dealt with and treated. Now, I'll be honest, meds only work in about 60-70% of cases, and some of them have horrible side effects. So don't expect the doctor to be able to give your son a "magic pill" that makes it go away. Your son will probably have to make a few lifestyle adjustments...like making sure that he gets 7 hours of sleep, that he doesn't get stress out, and probably avoiding caffeine as he gets older. If you and your wife don't want to risk the possible side effects, then investigate the alternative treatments. They're written about in the alternative treaments thread in the library on this site. Also, keep a journal.

While you're waiting for all the tests, start keeping a journal on your son. Write down everything he eats and drinks (how much and what time) as well as how much sleep he gets each night, any stress he's under, and if he has a seizure - what it looks like, how long it lasted, where he had it, and what he was doing before it. The reason you want to keep a journal is to see if you can see if there's anything in particular that's causing the seizure. Here are some "triggers" ton consider: specific foods, flickering light bulbs, lack of sleep, too much stress, hormones (is he getting ready to go through puberty?), low blood sugar, hyperventilating, being too warm, etc...this is just a short list. If you can see a pattern, then try to avoid the triggers and see what happens. So keep the journal and see if you notice a pattern. And take the journal with you to the doctor. You will want to write down any questions that you have for the doctor. That way, you'll remember what exactly you wanted to ask him. It's too easy to let your emotions distract you while at the doctor's office. I hope this helped.

Again, welcome to CWE. Feel free to ask questions, vent in the padded room (E can be very frustrating), or just chime in. Invite your wife to at least the info here. Knowing some basic info and talking to people with E might help her to calm down. :) Just remember, you aren't alone. There are lots of people here who are also either the parent, spouse, or relative of someone with E. It's not all just people with E. :) We all need to cope, and we all need some help at times.

Oh dear...my apologies that this is soo long.
Hey NewGuy. I'm so sorry to hear about your son. I'm relatively new to epilepsy too and had what you could call a crash course into the illness. I was diagnosed in June 08 at the age of 28 and 3 months later my then 8 month old son was also diagnosed. I hold all the same fears for him that you do. Will he be picked on or made an outcast, will he miss out on things. I will give you the advice given to me. Education is the key. Educate his friends and classmates on what epilepsy is and what to do. If they understand what it is and know that it doesn't make him any different than hopefully they will accept it. Obviously there will be activities that will need to be restricted or more supervised than others like swimming but it doesn't mean he has to miss out on everything. I also think the way you are with him during and after a seizure will make a huge difference to how he copes with his epilepsy as well. If you are panicked and stressing out afterwards it might scare him or make him feel like there is something wrong with him. If you deal with him calmly and lovingly (which I'm sure you would!) I think it would make a huge difference. I know just how scared you guys are, there is honestly nothing worse than seeing your child suffer and feeling helpless but educate yourself as much as you can and stick together and deal with everything together. I'm so grateful I had my husband with me to go through all of this with, I could never have done it on my own. You have come to the right place for support, this website has helped me tremendously, it's amazing how helpful virtual friends can be! Hang in there and make sure you keep us posted!

there is no reason to give up hope, and here's why:

He still is able to walk. He's still able to talk. He's still able to see. He's still able to hear. He still has the use of his limbs.....it's not like he's been stricken with CANCER.

OK, he's got EPILEPSY. You can say it now. "My son has epilepsy." Now, WHAT are you going to do about it? Are you going to sit back on your haunches, and let everyone steamroll over him, and make fun of him, OR are you going to STICK UP FOR HIM and be his ADVOCATE?

I am NOT saying that it will be easy. No sirree bob. Not by a longshot. But your son deserves the same chances that any other kid gets...as much as he can possibly get. It is UP TO YOU to see that he gets those chances.

I am NOT trying to be mean, either. I AM just trying to point out what you will need to do.

As an E patient myself, my parents stuck up for me, unbeknownst to me, for years during school. If the original school system had had their way, I would have been locked up in the funny farm. And as much as I fight with my mom to this day, I WILL give credit where it's due in this particular instance. And, I KNOW it could NOT have been easy for them, either. Especially based on what my one aunt tells me..............

Feel free to ask what ever questions you need to. The ONLY stupid question is the one that is UNASKED. We will be here for you, no matter what, OK?

Now, go love that son of yours, and make sure he knows that you do, even with this stupid new diagnosis. Trust me, knowing that you're loved anyway makes ALL the difference in the world......

Take care,

My daughter had her first seizure at the age of 14. She is 17 now. At it's worst, she was having 6 tonic clonic seizures a month. We have been able to reduce her seizures with a combination of nutritional changes, vitamin and mineral supplements, and neurofeedback. I am researching almost daily to find out the cause. She is med free, and lives a wonderful life.

She occasionally has a set back, but is able to follow her passion. The neurofeedback is helping with her cognitive abilities, and the vitamins are making her nails grow long and pretty.

We all work hard to bring awareness to the communities we live in. Just remember knowledge is power in finding answers. Help us stomp out this disorder.
Welcome NewGuy :hello:

I can totally relate to many of your feelings. My 7 year old son was recently diagnosed with epilepsy. Seizures can be a scary thing. The one thing I never wanted was for his life to be abnormal.

I've come to realize that he is still the same sweet, caring little boy that he's always been. Epilepsy doesn't change who he is and will not define him.

I spent hours and hours, days on end, researching epilepsy and various treatments. The one thing his father and I decided was to take a proactive role in our son's treatment and to avoid medicating him. So far his epilepsy is under control through proper rest, nutrition, and other natural alternatives.

Epilepsy does not change our expectations of him. He's excelling in school. He can run, jump, play, and keep up with other children. I expect him to grow into a well functioning adult.

Your son will see his epilepsy as you see it. If you don't let it get you down, neither will he. Hang in there. You're not alone :)
Welcome! I am 48 and my seizures started a year ago. This site is a Godsend! I have really learned a lot about E here. It really is a great place to come and ask questions or just vent.
E is strange because there are so many variables, different kinds of seizures, different triggers, different reactions to meds, etc. I sure helps to have this place to keep your focus. Best of luck, please keep us updated on your child
Hi NewGuy, welcome to the forum. :hello:

When I read your posts, it sounded to me like you (and your wife) were really struggling with (ie. the pain you mentioned) the stigma aspect of epilepsy. Epilepsy doesn't condemn someone to life in a Leper colony.

There are many treatment options available these days for controlling seizures. No need to give up hope before your son even starts his life's journey. :twocents:
:hello: NewGuy!

Well, the good news is, they have caught it early,
and another good news is ---> finding out specifically
what it is!

If it is "benign" epilepsy - aka Rolandic - meaning your
child will outgrow it, that news is even better, which
typically means by the time he gets older and out of
puberty, he has a brighter future ahead!

It does not necessarily mean that "epilepsy" is there
to stay forever. Some cases, they just fade away
and never to return back again. Other cases, unfortunately
stays. So let's hope it is just "benign" Rolandic where he
would just outgrow it, which is quite common with

I am sure it is a frightening thing to experience and
a shock-wave to learn of it, but only an EEG and a
repeat EEG would confirm this. But of course, they
would want an exhaustive background history of
both sides of your family if anyone in your family
has had Epilepsy, even if it was a childhood "thingy"
and they outgrew it (that would be a good news
right there - meaning it was Rolandic).

However, if there were members of your family on
either side who had Epilepsy, they need to know this
and if all possible the specifics, because it helps to
narrow down; for it is possible for Epilepsy to be
"genetic" or an inherited trait. Sometimes Epilepsy
just happens without an unknown reason, or for
some other reasons - so you will need to remember
a lot of things - such as did your child suffer high
fevers for prolonged period of times? Suffer from
Mumps, Red Scarlet Fever, Rubella, (German) Measles,
etc - they need to know this as well. So it helps to
be prepared and ready for the Doctor's office visit
upfront. The more you can write down and record
everything you know and remember - jot it down.

It means a lot to the Neurologist / Epileptologist,
for it will benefit your child a lot as well as bringing
peace of mind to you - please do not be afraid to
express your fears and concerns to the Doctor,
they understand for they deal with this on a
constant basis all the time. Do not hesitate at
any time, and if this helps, feel free to click on
the logo below - Epilepsy Foundation and give
them a call - they can help even further with
more assistance and information and even bringing
more calm assurance.
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