little sister with epilepsy

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New Member

Date Joined Mar 2005
Total Posts : 1
   Posted 3/18/2005 7:07 PM (GMT -7)   
Hi ... I just joined! My little sister has epilepsy... she started having grand-mal seizures when she hit puberty around age 11 or 12 and now she is 14 , 15 in April. At first she started having seizures, one every couple of weeks. Then when she got on some medicine she had a few more but then she was seizure-free for about a year and a half. But then recently ... well January... she started having seizures again. So we got her medicine changed and she just started it in the begining of march. She had just been on 300mg of Trileptal  and 200mg of lamictal.. taking one of each , twice a day. Now the doctors are weening her off of lamictal and on to 250mg of keppra ... taking one a day and soon, two a day.
       I just wanted to talk with others who are familiar with epilepsy because as long as my family has been dealing with this, we still could use more information and support. We are very lucky, God must be watching out for us because every seizure she has had, for the most part have been at home with all of us with her. We are so worried about her having a seizure somewhere away from home, and people she's with not knowing what to do. We just dont want her to get hurt. We have all had our individual break-downs dealing with this, but we have been very blessed and are getting better at dealing.
      I would also like to put something out there.. and that is that we switched her doctor about two years ago because we felt like we were not getting enough response... and when she started having seizures again we called the new doctor... so they were going to switch her medicine .. luckily my mom looked up that medicine on the internet and found that that medicine was for people with PARTIAL my mom called the doctor and questioned it... turns out they had no idea that my sister was having grand-mal seizures!!! How could your own doctor not even know what you have? Anyway.... always get a second opinion and dont be afraid to question everything!
    So basically i would like to hear what anyone has to say about anything i have written or any ideas or suggestions or stories to tell ! Thanks!

Veteran Member

Date Joined Jul 2003
Total Posts : 585
   Posted 3/18/2005 7:36 PM (GMT -7)   
Andrea, I am so sorry for your sister. You are a great sis to want to help her out!! Family support is so important. It also helps for you to get support. It is a tough thing for your whole family to have this stress. Hoping you get better help for her soon! I have 2 teens who both have seizures, but one was recently diagnosed. She supported her brother for many years prior to that.

It is tough trying to find the right med!! sometimes you just need to keep trying different ones or combos to see what will work. Has she seen an Epilepsy specialist (epileptologist?) Sometimes they can help!

Veteran Member

Date Joined Feb 2003
Total Posts : 668
   Posted 3/18/2005 9:52 PM (GMT -7)   


I have a similar story to share with you and again it's another example of what can happen if you're not careful with your meds and getting a second opinion.

Parents, Please watch that you child with epilepsy is seen by a NEUROLOGIST or EPILEPTOLOGIST, not just your family doc. who may not be to familiar in this field.
I have an interesting story about my 40 year old sister who was dx'd with EP when she was 13 yrs old.
At that time she didn't see a specialist, but instead, saw her family doc who over prescribed pheonobarb and dilantin, so much that it became toxic in her system and caused brain damage after long term use.
It (the grande mal seizure) was triggered when she got her first menstrual cycle.(puberty)
At that time, my mother took her to the family doc. but instead of getting a second opinion, she let the family doc. over medicate her.
The meds were so powerful that she has never advanced past age 13. Now she's 40 and has never worked a day in her life or played any sports and couldn't even complete high school or have a family because she was constantly in a fog and everything is "TOO STRESSFUL".
I blame my mother for most of her problems because every time my mother takes her to see a doc. if she doesn't hear what SHE wants, she takes her to another doc. because she doesn't want her daughter to be labeled as having a disability. I don't have anything to do with my mother because of what she's done to my sister.(Kelly).
Now my sister (Kelly) is so messed up that she barely regognizes me, She tried some voluteer work at the hospital and I happened to be in there one day to visit a friend and when I called out to her she didn't know who I was at first for a few minutes. When she speaks (which is rare) she looks through you. not at you. You have to speak to her like she is a 13 year old or she can't understand. She can't complete a setance without messing it up.
Her gait and co-ordination is so bad that she is always holding on to something and when she walks she always looks like she's going to fall.
She's a walking vegitable. What kind of a life is that.
My mother thinks that Doctors are stupid and just like to use big words.
Thank god I was dx'd after I had moved out or that might have happened to me.
All this from being over medicated.
And she still has several grand-mal seizures a week.
So this is what can happen if you're not careful and the meds go toxic in you're body.
I'm not looking for any help for her, she is permantley damaged and I'm just venting (pissed off) 
Randy (Ontario)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

Veteran Member

Date Joined Sep 2004
Total Posts : 775
   Posted 3/19/2005 10:26 AM (GMT -7)   
What a wonderful and caring sister you are to come here for advice. I would suggest you get her a "medical alert" bracelet for when she goes out in public. I am going to get one myself. I think it is great. Maybe you can get her to sign up here if she is interested. I know it helped me so much meeting other people with epilepsy. I was dx'ed at 23 and I am not 24, so this is all new to me too. I commend you for finding this forum and asking questions. Hopefully the new meds will work. I am on Keppra myself, for Grand Mals and partials. Take care, Tracy

Regular Member

Date Joined Feb 2005
Total Posts : 241
   Posted 3/19/2005 9:21 PM (GMT -7)   


You are a terrific big sister!  I agree with Tracy about the medic alert bracelet.  I actually have a necklace that I wear that has my name, allergies and  Epileptic engraved on the id.  I know it doesn't sound very fashionable, but in the unfortunate event that I am out for a walk or alone and I am found by someone and can't answer for myself I want someone to at least know that much about me.  It is personal preferance but I wear the necklace because it doesn't show under my ordinary clothes. But if I were to be examined by any medical personal, they would see it right away. 

The most important thing about medical care is having a good relationship with your doctor = good communication.  Good treatment is a partnership with your doctor.  I think everyone agrees that we want the most up-to-date, well researched treatment for our condition.  What we can debate on is how to go about getting that treatment.  Your sister's strongest advocate is you and her family.  Make sure those closest to her goes to her appointments (and keeps them!), asks questions if things aren't going right, get a clear plan of action  (e.g. how long to expect this med to start to work), long-term goals (is there any chance that surgery may cure/improve the seizures).
It can be frustrating and exhausting at times.  Not only for your sister, but for you too!   You have to have a form of release (exercise, yoga, hobby, music, etc...) and maybe a sense of humor doesn't hurt either. 
We all support each other here and encourage you to come as often as you like.   
Best wishes,       
Glenda :-)
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

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