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Hello, I'm new at this, but I'm going to try this out. Our son was recently diagonosed with epilepsy. He has grand mal, petit mal, and partial complex seizures. He was 3 when he had his first grand mal and just recently turned 4. We've started him on Keppra and he's having really bad side effects, so they are trying Lamictal while decreasing the keppra. He is having a lot of seizures while changing the meds. How does everyone cope with the day to day fear of this? How do we deal with his brother that is 5 and scared to death? Does the stress get better...ever??
 
Welcome to CWE

Good to have you here. My seizures are mostly partials, it's very rare that I have a tonic/clonic (grand mal) seizure. I realize I am lucky that way. There are numerous parents here in your position that might have some advice for you.

In my opinion though, I think that making sure your 5 year old sees that you're not scared will hopefully be contagious & his fear will subside. Maybe even teach him what to do during a tonic clonic seizure-move anything sharp or dangerous away, never hold him down, never put anything in their mouth & put something soft under his head. Remind him his brother will be a bit tired & confused afterwards but not to worry. He'll come out of it eventually.

Meanwhile have a coffee:cheers: & check out the rest of the site. There's a lot of info on this site that's helped me out. Hope it helps you out too.
 
sorry about your stress and welcome to the site

Hi, I'd like to say welcome to the site first and foremost. I'm sure this is a major life change for you so stress would be the initial reaction. If you're stressed and fearful can you begin to imagine what the children must be trying to digest. I've had seizures for over 25 years mostly tonic clonic. So for me its just a natural/unnatural extension of my being. I was my parents first and only child to be diagnosed with Epilepsy. I must say they always handled me with confidence and complete reassurance-I always felt secure and cared for and for the most part not any different than my siblings (6 others). My parents allowed me to go places with my siblings who all knew what needed to be done or if an ambulance needed to called etc. I think that making yourself familiar with seizure first aid and learning as much as you can about Epilepsy will lend you confidence through your plight. There is a ton of information on this site and success stories through alternative methods. I pray that you find a great medical team and are really proactive in your sons treatment because as cliche as it sounds knowledge is power. We are all here to support you so if you ever just need to vent please feel free use this as an outlet while making your home environment a source of comfort and love.
God Bless You!
Christine.
 
Wow, Thank you for the insight, what a great way to look at it. I think you've hit upon the most important thing; a great medical team. I just don't think we have it yet. We are seeing a pediatric nurologist who is by all accounts great, but really I feel he's so busy that I'm not sure we are getting any more than the basics. They change his meds at the drop of a hat and send his emotions flying. He is so smart and funny it pains me to see him like this.
 
there is nothing more disgusting than having a physician who you don't feel has your well being as priority. The side effects of the medications can be (but should not be) as traumatic as the actual seizure. We are in the age of technology so do as much research as possible about the specific medications, the known side effects and other treatment options. Make a follow up doctors appointment asap go armed with questions about the current treatment describe the unacceptable side effects etc. Demand to be a part of the treatment team don't let them throw vague terms and cookie cutter reasoning at you if you need an hour in that office that's what you should have. If this physician is not the one then he's simply not the one move on. I don't have children but I heard it said best in another thread on this site you have to be your childs advocate. I'm really sorry to hear about your three year old though these are critical years for him and he should be as healthy and coherent as possible. If you decide to stay on the traditional medication route there should be something out there with far milder effects (I say that but each person reacts differently) I am Praying for you guys.
 
Hi Cathy
My daughters first seizure was at the age of 14. She is now 17.
We found the medication to not be useful. It caused more seizures than now when we are using alternatives. Be aware, there are some people that medication does not work. There are so many contemporary ways of treating seizures that I feel it is worth at least learning about them before jumping on the medication merry go round.
 
Hi Cathy,
I myself am an Epileptic and have had seizures since I was 2 years old, I am also a caregiver and one of my clients has just been diagnosed with epilepsy, I have learned that you need to stay strong for yourself and your children,That way you can and will be able to take care of your children and family. I know it is hard because my son had his first seizure at the age of 17, caused by a fever of 103, ask your Doctor about the Vagal Nerve Stimulator, I have been put on almost every single anti-seizure medication ther is. and every time the doctors changed my meds my seizures were out of control.

You and your family are in my thoughts and prayers.
 
Hi Cathy and Phillip! You said that the med changes make your childs emotions go flying..was this before or after the keppra? If it's more noticeable after being on Keppra, your child might have what's called Kepprage. If that's the case, you might want to try a vitamin B-6 supplement. That's worked for adults on keppra...don't know if it will help your child...so ask the neuro first...and tell him why. Let him know it's because the child is more irritable..

As for the 5 year old being scared...well, I'm going to tell you how I reacted to my seizures. My mom freaked out and got panicky looking and worried every time I had a seizure. It made me feel guilty for having the seizures...and my brothers learned to fear them. My dad responded to a my seizures in a relaxed, laid back way. When he came to get me at school or at the hospital, he'd smile at me gently and would ask how I was feeling...and then if he knew I had a test at school that day or something, he'd crack a joke...something like, "so you must really not want to take that test today..."..something that would make me smile. For the longest time as an adult, after a seizure I would feel so guilty for having it...and then, after a while, I realized that constantly apologizing and feeling ashamed of myself for having them was ridiculous. Try to make sure that your children dont see you panicked and worried looking. I know it's hard..but even at that young an age, they an pick up how you're feeling, and it can effect how they react emotionally. Your 5 yr. old is prollyl fearful because he doesn't know exactly what is wrong with the 3 yr. old...but it looks scary and definitely makes you and your hubby worried..so he gets his reaction from watching you. Try educating the 5 yr. old. In as simple a terms as possible. And do it when the younger one isn't having a seizure. Just take the 5 yr. old aside and say something like this..."do you get scared when X gets sick?" "Mommy and daddy do to. But you need to know that X has seizures. Epilepsy is kinda like having everything in your brain trying to do stuff at the same time...kinda like lightning trying to flash all at one time. You can't catch what he has, and even though it can look scary, he doesn't hurt when his brain does this. He loves you just as much. And so do we. We don't want you to be scared. The epilepsy is not a bad thing...just a different thing. do you have any questions?" Then answer his questions. Also, try telling him what he can do to help his baby brother if he sees him having one. Knowing what to do and what is happening will do alot to get rid of his fear. Trust me, I'm a teacher and have this talk to my kids at the beginnning of every semester. And yes, I've had them in front of my students. They all responded great.
 
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Thank you for the great advice. We've adopted a saying in our home now, This is our family and this is how it looks!!! We are trying to teach that every family is different in some ways and this is just who we are...no big deal! As time passes and we become more used to the seizures we relax and stop feeling as if he is going to die everytime he has one. We are even going to take a little spring break trip because of the confidence we are gaining from the forum.

Thank you so much for the answers, I think this is going to be a long process of gaining control of the seizures, but I feel we are finally getting some good information.

Cathy
 
Cathy & Phillip

Cathy & Phillip,
I am glad to hear that you both are getting to where you can stay more relaxed, when your little one has a seizure,I know its hard but I am always looking at things in different ways like Gods is always watching over us.
I know he is me because of my seizures that are now under control,
getting hit by a drunk driver twice in my life.

I know the God is watching over you and your family especially your little one.
My father was a paramedic/firefighter when I was very little, and as I got older he taught me alot about what to do and not to do for seizures.
There is so much I could tell you!
Let me know it you want me to e-mail it to you.


Shonni
 
Hi Cathy & Phillip!
I love your saying, I may just have to borrow it!! I was diagnosed with epilepsy in June last year and then 3 months later my 9 month old son was as well. I know just what you are going through and how scared you feel but it sounds like you have the right attitude and it's great that you aren't letting it stop spending fun times together as a family. I think that will be very important for both of your children, that epilepsy hasn't taken over everything. Best of luck getting everything under control, keep us posted and enjoy your spring break!
 
Hi Cathy and Phillip - welcome first of all.

I agree with the previous advice.

Children mimic parents - so if - somehow you can learn more and stay calm - so will you family.

With modern medicine and alternative care as you will find on this site, it is a much better experience to deal with this whole situation with your child now in 2009 than way back in 1958!!

Get good medical help, research on this site, learn, and try try try - we are all here to help you with encouragement and support.

It'll be ok. Information really helps and the moderators here really help us all to learn how to cope.

Ask questions - no question is a dumb question except the one not asked!!

Again, welcome!!
 
Welcome! Personally, I had epilepsy as a little kid around that same age. My older sister was my advocate and protector in school. The close relationship between your kids will become a support system for you as well as them.

The calm demeanor and appropriate reaction will help both you kids know how to deal with this condition.

I was on phenobarbital as a kid. I'm currently taking Lamictal with excellent results. I've read other posts about Lamictal causing skin rashes, but I've not had that side effect. Lamictal was a magic pill for me and practically stopped seizures for over 9 years. It has been great for me personally.
 
Alivenwell

:clap:Congratulations,:clap:
On Lamictal working for you, I had more seizures when I was on it,
I would continuously loose weight, and I was very moody, I would also
break out with red blotches all over my body.

I also have been seizure free for 9 years it will be 10 in july,

Keep you the great work.:clap:

Shonni
 
Welcome

:cheers:

Welcome to our home!

I have just switched from keppra to lamictal with good success. I started having issues with the keppra after five successful years with it. You will find that no single drug works for everyone and not forever. Thus, stay on path to find what works for you while learning what you can from our experiences.

:cheers:
 
Reply to BuckeyeFan

:I agree with you! because I have been there so far out of all the anti-seizure medications I have been on the Keppra,Topamax,Tegretol,Effexor are the ones that work for me. Not all meds work the same for everyone,

Shonni :clap:
 
Hi C&P, belated welcome to the forum. :hello:

... How does everyone cope with the day to day fear of this? How do we deal with his brother that is 5 and scared to death? Does the stress get better...ever??

Fear is the mind killer

Yes, the stress gets better when you get the seizures under control. :twocents:
 
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