Recent Epilepsy Diagnosis of 14f

Mardell - posted on 05/11/2010 ( 9 moms have responded )

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I would love to speak to other parents whose child/children have Epilepsy. Our Dr has already, within a month said she will have this for life. I'm worried what this means in real life terms. THe medicine can cause irritable mood swings, depression and a laundry list of others. Seems the cure is as bad as the cause. Im fearful for her being 14 and already dealing with puberty, and soon high school to boot. Thank you for your reply in advance.

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Kandy - posted on 05/21/2010

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my daughter is 13 and she has serizure seens she was 10years old and we try different medicine that didnt work for her try surgey that didnt help her to much and now she has to alot of different kind of medicine thats still dont help her to well so we just take it day by day and its hard to but we learn to deal with it and we do the best we can with her at least im not alond with this and i read some of the others story thats on here.

Veronica - posted on 05/19/2010

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My daughter was diagnosed w/ epilepsy at six months. She will be turning 18 this year.During her toddler stage she was having 40-50 a day. At age 7 she had brain surgery because her seizure frequency was out of control and medicine was not helping. The surgery cut her seizures down to 2-3 a year, but did not eliminate them. Courtney also has Aspergerger's. I have always been very honest and tried not to white wash anything about her condition. She has succeeded in things that I never would have dreamed she could do - Special Olympic Ice Skater.
She doesn't always get why she will forever have to take meds, but I explain it by comparing her to her cousin w/ diabetes.

There are many of us out here. Feel free to contact me if you like

Kimberly - posted on 05/14/2010

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I have had seizures since age 4 I'm now 53. mine were generalized grand mal seizures. My Husband of 34 years has whats called complex partial seizures. We both had good paying jobs. Our son had grand mal seizures that started at age 9. I don't know that your doctor can tell the future for your families experience with seizures. If you can get your daughter to a hospital that specalizes in seizure disorders. Cleveland Clinic in Ohio is were we took our son. Puberty can be the on set for some seizures. I have been seizure free now for twenty-eight years. My son and husband still have seizures. We all have our drivers liscenses. Like other illnesses it can only rule your family if you let it. Take charge of your health care. Don't accept the first thing you hear as fact. Drugs for seizures almost killed my son he got very sick from Depakote. Dilatin was a much better fit for him. I have been on Phenobarb since I was 4 years old. My husband had the most success with another medicine. It take time to find the right one for your daughter. Teens tend to not follow rules very well so my son stopped taking his meds. a lot as a teen with sometimes frightful resaults. He is now 27 with his own seizure free son who is 4. Our daughter who has never had a seizure has nine year old son who has had some seizures. She has chosen not to put him on meds. He has sleep walking and some other issues but for them since his doctor wasn't sure where to start after a long hospital stay my daughter made the hard decision to wait and see if he got better or out grew his trouble. They gave my Mom such a huge amount of restrictions for me as a child. She chose to not listen an not treat me any different then my seizure free sisters. That was the best move for me but the hardest for her. They said no tree climbing, never drive a car, no boating or fishing ect. I was an auto worker until I retired last year. So have a lot of faith and tust your Mothers instinct.

Renee - posted on 05/13/2010

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The key to meds is play with them until you find one that works that she tolerates well.Mysoline made me a real B@@@.That excactly how mom describe it to the neuro.I was 10.
What is she taking.Please don't let them give her depakote it causes Polycystic ovarian syndrome.if taken during puberty and pre puberty.You can have Epilepsy and be very successful.google the list of historical leaders who had it besides Julius Cesear.I had Epilepsy from 8 months.My epilepsy is surgery controlled,no seizures in 23 yrs.
know that some mood disorders are common with some forms of Epilepsy esp Temporal lobe Epilepsy.Feel free to PM if you'd like to ask ?'s about my experiences with Epilepsy.i remember being 14 dealing with it.

Melinda - posted on 05/12/2010

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Hi! My sister had epilepsy up until age 16 and my daughter has it now, but has been seizure free for over a year (knock on wood)! Basically, they will put her on medication, and its not fun. My doctor supplements with vitamin b6. It works!!! But she is at the highest dosage of b6 allowed. Once they have been seizure free for two years, they begin to wein (sp) off medication. My sister was actually able to get her license right on time. My sister will be 35 this year and has been seizure free since I guess about 16. Now she gained a lot of weight on her medication, but it was a lot different back then. She was horrible too. You just have to have a lot of patience. In the end, its worth it - instead of dealing with the seizures.
I hope I helped a little!
Melinda Timmester

Babs - posted on 05/11/2010

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Take it "One day at a Time" and don't think about living with it for "life".
Learn everything you can about Epilepsy and teach everybody that is willing to learn about it. Become an advocate for your daughter and teach her to become and advocate for herself to stand up for herself. It will build her confidence and her self esteem. Educate the school, the teachers, her classmates.
Record everything!!! You think you will remember things but in a week, a month, or a year, you won't. Record doctor visits, medicines that are given, mood changes (regardless how small they may be)
As hard as it is, try to live a "normal" life.
Check with your doctor about a treatment called a "VNS" Vegus Nerve Stimulator.
There is Hope.

Carrie - posted on 05/11/2010

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Julie, thank you for your comments, you sound like you speak from a long experience with seizures. Lately I feel sometimes it is hard for those who have a long history to be very empathic or remember the very beginings such an experience. They tend to generalize their negative experiences with people and situation to others experience or possible experiences. When you have something for a long time it becomes your NORMAL (which is a generic term for a new person's understanding of a new experience) thus, our NORMAL has changed significantly. And that is something to grieve. Fear of all the things I discribed is a NORMAL reaction to the dramatic changes that have happened. My daughter is 3 years old and so is her brother....they are supervised in the bath tub very closely not only because she has seizure but because they are very young children. I am sure it is different for a 14 year old with seizures and I am sure when Carlee is 14 I will have the same fear because a close friend of mine died at the age of 43 from having a seizure in the bath tub and drowning. We all have different experiences that shape our awareness of safety and our awareness of safety with a disability. As her mother Carlee's safety will come first. Her privacy second...she will have a therapy dog to allow her more privacy and freedom from my watching eyes. The example I want to set for her is that she can live, thrive, dream and succeed but she will have to take precautions to ensure her safety. That will become her NORMAL as a person who will grow up experiencing seizures. No she is not a victim and no she doesn't suffer... and she doesn't get to misbehave just because she has seizures...I am a Spiritualist and in our beliefs we see those with seizures as highly spiritually gifted people. She has a purpose and so do her seizures. SoI yes, we are grieving but we are also learning something very new. Learing to live and thrive with seizures. It is a difficult place to be as a parent...trying to balance fear and safety with whatever it is that is NORMAL. Carlee has a very kind and loving father.

Julie - posted on 05/11/2010

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I'm glad to see you are reading the information included with the medications regarding side effects. Those will vary from person to person, but it is good to be aware of them. Sometimes I've noticed doctors, the government, family, and patients will tend to blame behaviors on the side effects of the medications instead of actually assessing the situation and seeing what the cause of the behavior actually was from. Actually talking to and listening to the person helps at times though most people don't ever think of that one.

As far as being 14, dealing with puberty, starting high school, and having epilepsy, please don't stereotype her and limit her. You didn't say what type of seizures she has or how often, but I am assuming you are new to the epilepsy community with no family history, the type and frequency will be a factor as far as how it will affect her in the social setting in high school (ex. abscence vs. grand mal seizure). As Carrie is also a newly diagnosed parent, I'd like to point out you are both grieving the loss of what you expected your child to become and what you expected to experience with them as a parent whether it be freedom from certain activities, not worrying as much about others, etc. . I hope you realize, as I have said before in other posts, that what you say, do, and how you react will shape how your children see themselves, will effect their relationship with you, and eventually how they will interact or not interact with others. Carrie said "you get to live your whole life with this". In some cases, yes. I'm one of those lucky people. I can't believe there are people supervising baths on their kids because they are scared - what sort of message are you sending to them?! They are something to be afraid of? Something scary is going to happen when they are in the water or if they are around? YOUR CHILDREN ARE NORMAL FOR THEM. "Normal" is something society dreamed up and it's forever changing. Accept them for who they are and build them up - they have strengths and gifts that you need to see and acknowledge. They are not a medical condition. Yes, you are concerned about them and how it will affect them. Teach them and the people around them that need to be informed about it and what they need to know to help your child if and when they need it. Also, teach your child how to advocate for themselves so when you can't be there for them, they can do it. Being able to stand up and speak up for yourself and others does a lot for ones self-esteem, especially when you know (and see) it is having an impact. This is crucial for self-esteem in younger children and teenagers, making sure they have tasks and activities they do well at. Having a diagnosis of epilepsy is not the end of the world and only happens after a period of time where there have been a number of seizures that have not been attributed to an illness or some other cause. In the case of a bath, don't fill it so much, leave the door open a crack for the mid - older kids so they have some privacy, etc. . How would you feel if your parent was in the bathroom watching you bathe because they were scared of/for you?

For the moms that are grieving, take your time, but be careful around your children. No name calling, including nick names given by husbands. Husbands/dads can be horrible at times because they think they are being funny or just having fun/teasing, but in a way it's bullying. Your children will have enough of that in society. They need home to be a safe place where they are accepted for who they are, all of who they are. Please, don't think they (your husbands or your children) will deal with it the same way you do. Your children are seperate humans, obviously, and are at different developmental levels than you. What works for you may not work for them. Healthy ways to get out frustration and stress - exercise, healthy eating, talking, but no talking of "I'm suffering", "I'm a victim", devastation, etc. because that only enforces that type of thinking - they did this to me. Empower them to do things, not wait for things to be done to them or for them. They can't wait and put their lives on hold because "what if...". No one with a seizure disorder would step outside their house if they lived life like that. The most important thing is to keep talking with each other, honestly, and make sure you do your research, use the correct terminology, and get the answers you need from your doctors, community groups, etc. . Educate and advocate everyone involved and keep good records. Then you take it one day at a time. Take care.

Carrie - posted on 05/11/2010

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Hi Mardell, I don't think I can offer a lot comfort because we have a new diagnosis too.But you are not alone in these fears. Carlee my 3 year old has epilepsy and is on meds too. I have the same concerns. I look at her at the age of 3 and think..."you get to live your whole life with this." Someday she is going to want to take a bath without my supervision, drive a car...have a baby. I feel like I am constantly watching her every move...on the stairs, at the playground...everywhere...fear leaving her with anyone but her dad...playdates have to be supervised totally and most parents don't watch them like I do. The seizures come on so suddenly and out of the blue. You go from NORMAL to being slammed and back to Normal. She had her first on May 8, 2010, the EMS took us to the hospital, then on April 28 she had 3...I had to give her emergency meds, EMS came and took us to the hosptial. We have a 9 month old yellow lab we are training to be a therapy dog so she can grow up with some privacy and indepedence...I trust this dog more than my friends.

The meds are rough too. Our doc prescribed B-6 to help with side effects. She has what my husband and I label as "cosmo kramer" moments.



I suppose the only thing I can offer you is that you are not alone in these fears. 14 is hard enough but to add seizures to it...it is devastating. The one thing I do know is that I have to be the example for my daughter....she is going to deal with it the way I do. So, my goal (and I don't always succeed) is to live as normally as possible, talk about it. We don't stop our lives and we expect good behavior....Carlee still goes to time out when she misbehaves. She still has to go to school. Believe me it is hard sometimes.



She has a twin brother who has had a really rough time with it. But we talk openly about it and he learned the word Seizure. Somehow that has empowered him...it has a name.

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