Whats a mom to do

Tanza - posted on 05/07/2010

Many hugs for you! We just started this adventure in March ourselves when our 8yr old son had his first seizure and has escalated since. He sleeps with us every night now.

I think the most important thing is for you as her primary caregiver to find a solid support system for you!
You need to be able to get rest, have good friends to vent/cry with, be able to get out and walk/exercise to clear your head, pray , etc. This will then give you the strength, clear head and stable emotions to be there for your daughter - even when you don't have all the answers yet, talk to the doctors, listen , understand and be a sensible advocate for your daughter.

Trust me - I understand the pull to freak out … sometimes there are extreme situations posted that make you worry and go there but don't.

Take each day and piece of information 1 step at a time.
Your daughter may need someone besides you to talk about how she is feeling with this - and also how she worries about it affecting you, etc.

We just started Keppra this week as well and are seeing how it goes. Hang in there - and you can check in anytime with me! =-)

DAWN - posted on 05/05/2010

I have had gran-mal seizures since I was 14 and other types of seizures since birth. Been on so many differant medicanes that I can't even remember them all. Just remember to stay strong for her sake and yours. I always hated it and still do, when my parents would frreak out everytime I had a seizure. I'm 32 now and still if I am in deep thought and trying to concentrate on something my parents will start yelling at me. That irks me so bad. Don't keep her from doing anything, she still needs to live her life and never let her think that the seizures make her odd. I always think of them as something else that life threw at me to deal with, and that I am a stronger person because I have seizures. Have her look on-line at differant sights that give a lot of history of seizures. There is one that has a list of names of people that had epilepsy and celebs from now that do.
She can still play sports and go places with other people. Just make sure that her teachers and coaches know what to do and not do if she has one. Good luck.

Kathy - posted on 05/05/2010

I have epilepsy and my son has epilepsy. I know it's scary but I will tell you that the best thing my mother and father ever did for me was to teach me that I had a condition that needed to be managed but that I could live my life normally. I swim and I play tennis -- I don't limit my activities because of my epilepsy and neither does my son. Just let her coach know about her epilepsy and tell the coach what to watch for. I know seizures are scary, especially if you have no experience with them -- just know she isn't hurting when she has them. There are a lot of books out there about children with epilepsy -- check your local public library and see what they have. When you know more about her condition, it won't seem so scary to you. You may still cry -- I cried every time my son had a seizure (and I said I never would because it used to irritate me that my mom cried every time I had one) but the more you understand the better off you'll be. Sorry this is so long.

Samantha - posted on 05/05/2010

If your dr. does not answer your questions switch dr. Dr, Stanely Johnson at Barros at St. Josephs answers all my questions and my daughters questions. rather we are there for 30 mins or 2 hrs. he answers.

Julie - posted on 05/05/2010

I personally, wouldn't ask the 20 million questions....I've asked doctors questions and have been dropped as a patient. I've asked questions and have been dismissed, had them unanswered, etc. . I have even been told not to ask the doctors questions. You need to keep it short and sweet, maybe a couple of questions per visit so you don't overwhelm the dr. and don't come across as to anxious, worried, threatening to the dr.'s ego, etc. . At least that's what happened in my case I think, but I grew up with it, am an R.N., and see things differently than a dr. does. It's to bad we have to conform to the medical and society standards instead of them having to conform to the patient's demands/ requirements of care. Which only leaves us with educate and advocate. Patients/Family/Advocates vs. medical community & society (media, status quo, norms, etc.).

Samantha - posted on 05/05/2010

My heart goes out to you and your daughter. I have a 16 yr. old who was diagnosed when she was 10, It is scary at first and all you want to do is keep her in a bubble and by your side. My daughter was in depakote, and then she had a new doctor at st josephs and he took her off and put her on lamictal. It has worked great, she has epilipsy, focal and generalized seizures, take it one day at a time, ask the doctor 20 million questions, do reaearch.

ElaineGuilbeaux - posted on 05/04/2010

My youngest daughter has petit mal and grand mal epileptic seizures. She ahas had them since she was between 10 and 13 years old. Some people grow out of them and some people keep them their whole lives. She had stopped having seizures and then one day she started having them again. You need to have the doctor check on her medication because they may have to keep changing it until they find one that will keep the seizures under control.

Julie - posted on 05/04/2010

So it's been about a month since your daughter's first seizure and about a week since you posted. When she had the seizure what did the doctors say? Have they ruled anything out (ex. diabetes, hormone related, illness, etc.) ? Don't stress yourself and your child out more about things that you are not able to control. You can control how you react to the situation, to your child (yes, you are greiving what you expected your child to be/become and they will pick up on that as you being disappointed in them), and how you are dealing with it and of course, if there is anything that triggers the seizures (stress, lights, illness, lack of sleep, sugar, etc) make sure you do your best to avoid those triggers.
The other things you can control are education and advocacy. Make sure your daughter is informed and participates in all of her appointments and activities - it is her life and at 14 under federal law, if she is diagnosed with epilepsy and it affects her education and/or lifestyle enough to warrant a 504 and/or IEP she needs to attend those meetings at school because at 14 the transitioning process begins and they have to be involved. You can't make them live a "what if this happens..." life. Educate and advocate and know when not to reveal (ex. certain job interviews - ADA law). Don't "stay strong" - that doesn't do anyone good. It just covers up a lot of feelings that need to be talked out and if you open up the conversation between you and your daughter about your concerns, even at the doctors office or even with a counselor, she may hate you for it for a while, but at least it will get you talking and realizing that you aren't alone and will give her the opportunity to know that mom is not a person reporting to the dr. and is not working against her trying to make her "normal" again by getting her "controlled" on medications, but might be feeling the same way she is and just wants to find the answers.
Other than that you take it a day at a time, just like everything else - set small goals, get through the rough times, and focus on the good things. Your daughter is a gift, don't waste time worrying - celebrate all the gifts she has and the things you will both learn, as well as others will learn, from this experience, which believe it or not, some people would also consider a gift. You will get a gift to see the world in a new way and see people differently and then get to educate and advocate. Good luck in your adventure. You will succeed.

Janice - posted on 05/02/2010

i myself have grand mal siezures when i have one i am out for hours when keppra came out my neurologist was thrilled to put me on it i am 48 right now my siezures started back in 1991 i was seizure free until last august i was on phenobarbital it was the only thing to stop my seizures originally my neurologist recentlly moved out of state so when i got this new young dr who came in and said your coming off the phenobarbitAL AND I WAS ON A HIGH DOSE OF IT AND HE TOLD ME OF THE KEPPRA I REFUSED AT FIRST BUT NOW I AM ON 4000MG OF KEPPRA AND HAVE BEEN SEIZURE FREE SINCE THE FIRST OF THE YEAR

Julie Anne - posted on 05/01/2010

My son was 19 when he started having generalized siezures, I fully understand what you are going through, he is on lamotragine, I worry everyday, but I know what you mean about letting them live their lives!! but I can asure you it does get better, its always harder for the parents, my son cannot see what the fuss is all about, he does not go swimming or anything which could be a possible risk, he always has a bath or shower when theres someone in the house, he lets us know where he is going, his friends all know now what to do if he does have a siezure in their company, its all about taking control, its a little bit different for you as your daughter is younger, but it takes time for everyone to accept the situation, but as long everyone is aware what to do if she has a siezure then thats all you can do really, its just about making sure she has a much normality in her life as she can, when my son first started having siezures I couldnt sleep for worrying was he going to have a siezure in the night and no one would hear, but im not too worried about that now, the epilepsy nurse said to me, you cannot put your life on hold, I hope you start to feel better soon :)

Jennifer - posted on 04/30/2010

My heart goes out to you, it's so scary in the beginning. You are all going to be ok - it's just a hell of an adjustment.

Renee - posted on 04/30/2010

It takes seizure drugs a minute to get in the system.Does she have an "Aura" or can tell when they are coming.?I have surgery controlled epilepsy,no seizures in 23 yrs.Best thing my mom did was empower me letting me live and experience life..I can't swim but i got in the pool rule was i stayed near lifeguards.I roller skated,rode a bike.i could feel mine and stop what I was doing.I know it's scary and a big life change for everyone.Once you find the right med course it will be ok

Jeanette - posted on 04/29/2010

it is very scary when it first happens. especially in your daughters case as she is now 14 and never had them before. all you can do is try to stay strong both for her sake and your own. has she been to see a doctor about what has started to cause them now? once you get a diagnosis it will seem a bit better, as then you will at least know the cause for her seizures. good luck hope it all works out for you both xx

Mary - posted on 04/29/2010

I feel the same way, I am scared to death to leave my 7 year old alone to do anything. I cry a lot too. All we can do is watch over them the best we can and do let them live their lives. I would make sure she is under constant supervision while in the water. Try talking to her nuerologist about your fears and concerns. Keppra is also what my son is on and it is working well other than the aggression, which is getting better now that the doctor adjusted the dose by a little bit. Try to take time to breathe, cry it out and just keep doing the best you can.

Meg - posted on 04/28/2010

my daughter has quite afew different kinds of seizures and has been on several diffrent meds for them... give them a bit to work.. if they don't seem to work after a bit there are always others to try... I am in the same boat with you...I fear that she will have issues when she starts big school in the fall...But she is almost 6 and I need to let her have some freedom... ( she does wear a seizure helmet at nursery school. : ) I hope this helps.. good luck.

Brandy - posted on 04/28/2010

Just stay strong and calm and it's ok to be scared my son has what they call drop seizures so they are scare for me as well. give the med awhile to work and if there is no change i would get in to see her doctor and decious your fear with him or her. but stay strong