Can I vent???

[Hadley]

I know that you probably don't care what I have to say, but I just need a minute to vent to someone, anyone, that understands. I can't cry in front of my child because I try really hard to be optimistic and upbeat for him. He is 12 and this is our second go round with E. This kid, he is my life, my love, my hope, and my strength. He is 12 and has had 7 surgeries, none related to his E, and it seems that everything just always goes wrong for this kid. He is a good kid, a miraculous life that I brought into this world. How do I tell him how strong he has made me simply because he lives his life everyday without complaint, or frustration, or being down about what God has handed him. I get so angry sometimes simply because I want my child to not have to worry about whether or not he is going to get to drive in 3 1/2 years, or whether he is going to have a seizure when he goes on his first date. I try so hard to be positive for him, when I really want to pull my hair out and scream WHY at the top of my lungs. I love my child more than life and I want the absolute best for him, but with him being on 3 different medications and nothing is helping, it gets a little frustrating. I know that we have a good doctor, but it is like they do not care what happens at home because they aren't having to deal with it every night. I just want to get this seizure's under control. I want him to be able to sleep at night, I want to be able to sleep at night without having to be hit or punched or kicked because he is having a seizure. I want to be able to sleep without having to worry about him having a seizure that he isn't going to come out of. I just want to understand why. Why him...why does everything happen to him? I get so angry at parents who treat their "perfect" children so terribly when I know what my son has had to go thru and how thankful I am just to have him with me every day.

Ok, I am through venting...bawling...poor me'ing it...

Thank you for letting me vent, I hope that I don't have to do that often...but I have no one to understand my frustration. Thank you

[DAVE1967]

I know that you probably don't care what I have to say, but I just need a minute to vent to someone, anyone, that understands. I can't cry in front of my child because I try really hard to be optimistic and upbeat for him. He is 12 and this is our second go round with E. This kid, he is my life, my love, my hope, and my strength. He is 12 and has had 7 surgeries, none related to his E, and it seems that everything just always goes wrong for this kid. He is a good kid, a miraculous life that I brought into this world. How do I tell him how strong he has made me simply because he lives his life everyday without complaint, or frustration, or being down about what God has handed him. I get so angry sometimes simply because I want my child to not have to worry about whether or not he is going to get to drive in 3 1/2 years, or whether he is going to have a seizure when he goes on his first date. I try so hard to be positive for him, when I really want to pull my hair out and scream WHY at the top of my lungs. I love my child more than life and I want the absolute best for him, but with him being on 3 different medications and nothing is helping, it gets a little frustrating. I know that we have a good doctor, but it is like they do not care what happens at home because they aren't having to deal with it every night. I just want to get this seizure's under control. I want him to be able to sleep at night, I want to be able to sleep at night without having to be hit or punched or kicked because he is having a seizure. I want to be able to sleep without having to worry about him having a seizure that he isn't going to come out of. I just want to understand why. Why him...why does everything happen to him? I get so angry at parents who treat their "perfect" children so terribly when I know what my son has had to go thru and how thankful I am just to have him with me every day.

Ok, I am through venting...bawling...poor me'ing it...

Thank you for letting me vent, I hope that I don't have to do that often...but I have no one to understand my frustration. Thank you

Hi , My name is Dave & I was diagnosed with Epilepsy at the age of 14 months . When I was diagnosed with Epilepsy the doctor told my mom I might not live to be a NORMAL boy I might be a vegtable for the rest of my life . Well I proved the DR & NURSE wrong cause the very next day I sat up in bed & was speaking in full sentences .
In other words in child terms I told them to bite the big one LOL I beat my hurdle as a child . But now i'm 41 & living in Kentucky with my fiancee & at first I was scared when I told her about my condition cause of the women in the past , they treated me like a onenight stand & dumped me . Atleast with my fiancee she LOVES me & understands my downfalls & up coming hurdles I'm gonna try to go over . As far as your child let him know it's ok to let friends know about his Epilepsy , but only gently let them into it for they need to feel comfortable with his illness & not shy away from him. In terms of what i'm saying is , have his friends over for snacks & drinks then sitdown with them & lead them into your sons medical background thatway they'll feel more comfortable being around & with him & also know what to do when he has a siezure . Edjucate them about it & get them to know what to look for as far as signs go. Thats the main key to gaining not only his friends trust but getting thier help for you when he's at school & you can't be there. Another thing is get a Neroligist that is a SPECIALIST in Epilepsy of all cases , but be sure he or she is certified & has thier degree in your sons medical background . Otherwise you'll be going from DR to DR like theres no tomorrow . I hope I helped you out some & please write me back Thank You DAVE.

[Hadley]

Dave, you have helped me tremendously. I can't speak for my son, simply because I don't know what it is like for him, only from an outsiders perspective. I like the idea of introducing his friends to it slowly, I would never have thought about that. I guess for me, his life has always been full of suprizes...for lack of a better term, lol...and that everyone should just accept his as I do. That was a rude awakening for me, though, when I married my husband 4 years ago. He was aware of my sons past conditions and medical issues, but we thought we were finished with the seizure's, until January when they started back. My husband told me about an occurance one night that sounded all too familiar. This came two weeks after my mother told me about something "strange" that my son had done at her house. I made an appointment for the pediatrician immediately. We did an EEG on a Wednesday which turned out normal, only to be followed by a 15 minute grand mal on Saturday. Now we are on 2 different meds, along with B6 to counteract the depression caused by the Keppra. Nothing is controlling it. Now I am having issues with the school because they don't think that seizures should be causing my son to have problems in school. HELLO! Have you EVER seen someone after they have had a seizure??? Are you aware of what their brain is doing during that time??? I want to slap someone!!! I just want the best for my child and have really thought about who I need to call if they continue to think that he doesn't need any help at school. Any suggestions???

Thank you again Dave! I appreciate your input!

[RobinN]

Hi Hadley- My daughters seizures began at the age of 14. I couldn't let her friends in on it gently... it was right in their face daily. She had the majority of the seizures at school, and she has classic tonic clonic seizures. Down on the ground convulsions from 3-5 min in Algebra class, or out in the lunch quad. Nothing graceful about that, and this is a girl that did not like to call attention to herself. That changed rather quickly as a freshman.

We went the drug route at first, because I had no knowledge of the disorder at all, except for what I had seen in movies. Unfortunately things that the doctors were telling me didn't make sense, so I started my education at the University of Google. We went through four drugs and I finally called it quits, as they made it no better, and caused further issues that were not bearable to live with.

It was about that time that I met Bernard and came to CWE. I started learning about neurofeedback. I did not tell the neurologist at first that we were going to experiment with this, but it seemed like a better second choice than surgery. Boy has it been.
Rebecca's seizures have been reduced so much. She use to have six a month and now she is still having one, that is hormonal, and a bit more predictable. Perhaps I can lock her up during that week.... JK.

I believe in the theory that the brain learns to seize. NFB trains it to manage the stresses, and assaults on it by redirecting the brain. I makes the whole brain stronger, and more stable.

There are some great threads here that explain this better than I can. I just know what it has done for my daughter, and I feel blessed to have found this therapy here at CWE. Somehow it was meant to happen and now I get to spread the word for them.

As for school issues, we have some great teachers that are members. Even special ed teachers. So you can be as specific as you want with your questions and they will offer suggestions. There are also some great educational threads, because many of us have dealt with similar situations. It has taken quite a while for me to teach Rebecca's school. Some teachers just don't get it, and can't see past the end of their nose, even if you point in the right direction.

Hang in there. Life is not fair but we learn from these challenges and grow to be stronger people because of it.

[tinasmom]

Hadley -
My daughter was diagnosed with E at the age of 6. Her dad has E and it runs on his dad's side of the family. My granddaughter was diagnosed last August with E. Since I have been on forums and researching, I have learned so much about E. I've had some head butting with the school, but they have found out that I do my research and I don't give up. I also have some articles on E and teachers and how seizures affect kids in school. At one meeting, I mentioned some of the problems seizures can cause with learning and some of the teachers looked at me and said "I didn't know that." If you would like copies of these, you can pm me your address and I will send them to you.

I can understand how you feel about your son and just wanting the best for him. Sometimes it seems that life is so unfair. My granddaughter found her mother dead in bed from a seizure, she was 4 at the time. This little girl has had to endure so much in the last 2 years. Her biological father never knew her and she couldn't legally live with the only man she calls "Daddy". Then on top of it all, she starts having seizures.

Through this all, I have found compassion, understanding and knowledge from this wonderful forum.

[paradise survivor]

Hi everyone- I can see that this is kind of a caretakers thread but I would like to chime in if I may...First of all no one in my family on either side or either of my children have E, just me. I am also the only lefty in the bunch. I get great support from my immediate family although my own parents, well not so much. I did the med thing for the first decade on and off of too many to list and far too many side effects to go into here. For me and my family the side effects were the worst part- the seizures themselves were bad when they were bad but not 24/7. The side effects were 24/7. I now only recently started phenobarbitol but even that I cut in half-it lets me get a good nights rest and that is very helpful. I stopped the neurontin after 1 week because I felt drunk as a skunk all day and couldn't even stand or walk across the room. Control is a relative term for me...I prefer quality of life over 'control'. This makes my doctors nuts but my life happy and I can be a participant rather than a stoned out spectator. I think it is much harder on those around me to witness than it is on me when I have them- I aim for soft landings. I applaud those of you that have to struggle with schools and such and just trying to do the best for your child...you are wonderful. A side note, I am not sure what God intends but it seems to me that those who keep the faith can rise to great heights when given challenges, their stregnth and loyalty are remarkableok I'm done You parents rock in my book

[kris1230]

Hello Hadley,

I'm sorry to hear about your son, he sounds like quite the little trouper! I'm sure that's tough to go through at such a young age. I'm 21 and I was diagnosed with epilepsy a year ago and we're not having much luck with medications either. We've had periods we're I've done good. I expirenced many seizures at my college and thank goodness they were so helpful and understanding. I missed a lot of school, had trouble concentrating, reading , remembering, and there were days that I litterally was so tired I couldn't hold my head up. The school has a couch in their lobby and they would let me go out there and take a nap and an instructor, administrator, or someone from the management staff would end up covering me up with a blanket and just letting me get a little rest. Will my school took it upon themselves to educate themselves on seizures. They made a plan of action on what to do when I had a seizure and my instructors were all required to take a CPR class because I've stoped breathing in quite a few of my seizures. My college just got recognized with a certificate from the epilepsy foundation when I just recently graduated...That meant a lot to me, because that school has gone out of they're way for me. I can't drive and they even helped me find rides to and from school, how many colleges would do that? I would suggest talking to the epilepsy foundation around you. They offer free seizure education to schools and seminars(or at least the one by me does, I don't know if they all do), they also have all different kinds of sheets for schools about information on seizures and what to do, ect.

Krista

[TexasTravel]

Hi Hadley-Many, who do not have epilepy or have never been around someone who does, are just as confused as you might be. Many people are scared because of the baloney that society pushes about epilepsy.

I am in a very similar situation as your son. I have hydrocephalus, caused by chicken pox, that I aquired at 16 months old. My hydrocephalus, in turn, causes my epilepsy. I have had many of the EXACT experiences that your son has. It took me a while but I did find someone who, though they knew nothing about epilepsy at the time, is very understanding and has become a family expert in my situation, taking over what anyone else in my family has ever known.

I have been around the block with being kicked and abused, at school, by fools who did not understand or were scared or confused.

My advice is to be strong for him. I am quite sure that he can or will be able to deal with it, especially with someone encouraging him. And, when he does meet someone special, that accepts him as he is, I am sure that that person will be a special person within themself. Knowing how to deal with and learn and understand about problems.

You just need to be strong and encourage him to be strong. He is worth no less than any fools who try to intimidate him and, he most likely proves that he is even better than them for being able to overcome their foolishness.

By the way, I just had my Drivers License pulled after having a grand mal on a commonly used public main drag in or small town. I am in a small town so it takes a vehicle to get places.......you cannot just walk to the store or anything. So, I know exactly how that feels also.

If he wants someone to talk to about it, private message me. It is absolutely no problem and would be glad to help. I have been there.

[Katz]

Hey no problem you are entitled to sit on your own mat and cry for a bit as long as you are ready to get up and fight when you are needed. I'd say you don't have to be perfect only to love your kid and do the best you can for him. You need either a rub down or some of your mates to come over and have coffee or tea or sodas. Stop feeling bad or like you aren't a good mom nobody expects you to be perfect not even your kid and as long as he knows you love him and will be there for him no matter what then it doesn't matter what attitude you pick. So go head and cry. Go ahead and scream at god for doing this to your kid, rage at the universe and go to conselling or the gym if you need to but do not take it out on your family. I think trials of this nature tell us who our real friends are but what do I know I probably have had too much to drink or am crazy. Either way you sound like you need to be with your friends for a few hours. Since it's like studying for the finals occasionally you need to pig out or watch a video. Before returning to studying. Is your kid interested in anything? If he likes to draw stuff, likes baseball or likes animals or what not encourage him even if you are terrified. That's all you need to do rather than false optimism then just be with him and get to know what he likes and is into. If he likes to play soccer or wants to be whatever when he grows up then just be there even if you aren't certain it will actually work eventually he'll figure it out and be marrying some nice girl and moving into an apartment have a job and might have an inkling of guilt and call you occassionally. Don't think about all of the rotten luck he has had but think about getting to spend time with him. He's a tough kid and he'll make it inspite of everything he faces. I think he inherited it from you. Since you seem like a tough person to me. A great mom even if your optimism flags sometimes God doesn't expect us to be perfect and if he does he is a fool and I hardly think my creator is stupid. So what you aren't perfect learn to cope and get the help you need because kids are resilliant so you seem like the one who needs help. Just forget about all this nonsense and treat him like a normal kid yet make certain all the stuff is in your bag. Take him out for a fun time between medical tests and procedures. If he isn't bothered by it why should you be? One day he will bring a girl home for dinner and be holding her hand and one day he will be lifting the veil to kiss some girl. Or have a lot of wonderful friends who love him and a great job and if you dwell on what he's been through rather than what he can accomplish then you will lose him. In a way you are being pessimistic because all of those things don't matter to him most likely and they are normal for him. I think it is bothering you more than it bothers him because he is used to all of it but the thing you can do is make certain he has a mostly normal life and gets to try everything as long as it isn't unsafe.

[Tralee A]

i dont have any kids of my own but i have an idea to what my parents are going thru with me. i have had epilepsy for 5 yrs. they still haven't found what the cause or the triggers are (i have a video EEG next week) i also have type 1 diabetes, asthma and a genetic bone disorder. i get molly-coddled by my parents and as annoying as it is i kinda understand why. i was diagnosed with astyhma at 3 yrs, the bone condition at 4 months. my brother and mum have it too. my brother had it the worst and has had to have leg reconstruction done. it seemed like everytime something happened to my brother (high stress kinda thing) my body decided to say "ok my turn"
his first operation was in '94 and my family was home for 3 days then i was rushed to hospital with 5 hrs to live and was diagnosed with diabetes (was 9 at the time) everything went fine when he had the 2nd leg done. the next op was to have pins put into the tops of his legs to make sure they stayed stright. that was when i got E in '03.

there are times i want to scream WHY ME!! yet i have everyone comment on how i'm still always so positive. i'm like that coz i dont want anyone fussing over me more than they have to. i'm not down much but there are times when i feel confined by all this and want to scream. (today being one of them)
chin up. (((hugz))))

[Katz]

You can be angry with God angry with the universe and angry at fate but do not take it out on those people you love.