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Nocerisdave

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Trying to gather info that may help with my daughters seizures. Nice looking site kudos to the mods!
 
Welcome to CWE ! im sure you'll find plenty of helpful information here , there are alot of very knowledgeable people here , and they've always jumped at the chance to answer my questions .... when was your daughter diagnosed and how is she doing ? and how are you doing ? i really believe there are times when my E is harder on my husband then it is on me , good luck & enjoy
 
Welcome Nocerisdave

Glad you like the site & thanks for the compliment.

I hope to be able to help but would you like to share more about your daughters seizures? What kind of seizures does she have & is she on any kind of treatment for them?
 
lovemyladybug said:
Welcome to CWE ! im sure you'll find plenty of helpful information here , there are alot of very knowledgeable people here , and they've always jumped at the chance to answer my questions .... when was your daughter diagnosed and how is she doing ? and how are you doing ? i really believe there are times when my E is harder on my husband then it is on me , good luck & enjoy
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Thanks for the welcome. She had this diagnosis confirmed 6 months ago. We now know she has had at least two, tonic-clonic, prior to diagnosis. She has tonic-clonic, and absence Seizures. The absence seizures are common and daily. The tonic-clonic, (1-3 every ten days since diagnosis) seem tied to sleep patterns like most I have read about. She is 13 so she bounces back quickly after most. On the lighter side even after a seizure she still knows everything and we are idiots.
I cant imagine this being worse on a parent, spouse or otherwise who is tied to epilepsy. You are kind to think that, however, personally, my feelings about how her condition affects my wife and I has never really came up. I would bet your husband feels the same.
 
epileric said:
Glad you like the site & thanks for the compliment.

I hope to be able to help but would you like to share more about your daughters seizures? What kind of seizures does she have & is she on any kind of treatment for them?
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She is currently taking the below

Zonisamide 2-100mg Morning 2-100mg evening

Levetiraceta 1-250mg morning 2-250mg evening

See anything that jumps out at you guys, please let me know.
 
Welcome
My daughter began having tonic clonic seizures at the age of 14.
We tried 4 meds with seizures increasing in numbers and the side effects were horrific.

At that point of desperation, we decided to try some alternative therapies > Neurofeedback, Nutrition. Funny that nutrition is considered "alternative". Now after what I have learned, I would start there first. Nutrition has made the most improvement in the quality of her life.

She remains seizure free and med free. She still gets a "soccer punch" around her time of month, but it is now in the range of PMS. It no longer puts her over her seizure threshold. Which I am not sure you know (as I didn't know for quite a while)... everyone has a seizure threshold. The label is what starts throwing us off course of looking for causes.

I share because it is rare that you will get this info from a conventional doctor.
 
Aloha Nocerisdave! As a parent of a child with E, you will learn much here on this site...probably more than you will learn in a doctor's office. We will continue to be here for you:e:
 
You will definitely get more information here than from your doctor. From my experience they don't seem to have enough time to explain everything you need or want to know. This is the greatest place I have found, with the best people. I don't know enough to put my 2 cents in yet, but wish you the best.
 
I want to welcome you here.

Just as the others before me have said, you will get more info. here. HELPFUL information. I say this because in little over a week since I came upon this site. I have learn answer to question I have had for some time.

I
 
Welcome Nocerisdave!

The thing that jumps out to me is that your daughter's meds don't seem to be working if she is continuing to have daily absences and frequent tonic-clonics. It's great that she can bounce back from the t-cs, but they can take a toll over time. In addition, the more you have, the more likely the brain will get in the habit of seizing.

I haven't tried Levetiracetam (Keppra), but I have done a stint on Zonisamide. I found it to be very hard on my stomach/appetite/blood suage, and there were cognitive side effects as well. I hope your daughter isn't suffering any of those, but if she is, take note and let the doctors know. Since her current meds aren't doing the trick it may be worth re-evaluating them or the dosage. And there's a possibility that making nutritional changes could help -- gluten-free or low carb diets (like the MAD) have shown a lot of success. If you read RobinN's thread http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/ you can see how nurtitional changes made a huge difference for her daughter.
 
nakkamova is right-she might eventually start having a lot more seizures. I did not know what these were in my twenties, and since there was nobody in my family familiar with seizure, they did not notice. I suppose they thought I was daydreaming or something. In my twenties I remember mostly having trouble going to the movies. I always left feeling spacey and tired. I once left with this eye problem that scared me to death, but left after about 10 minutes, and of course I did not go to the doctor, because when your young you don't think your going to die or anything. I now know eye sight changes are a big sign that I have a seizure coming. By the time I hit 42, it was like I hit a wall. I thought I was just burnt out from all the years raising kids, school stuff, sports, and work. It was 6 weeks from my youngest child to graduate from high school. I thought I just needed a break to rest and thing would get better. I could hardly function. I went from somebody who got up at 5 worked all day, than did whatever else needed, made it to bed by 11, and started again. I loved to work in my yard, camp, have people over ect. That all stopped. That is when I started going from doctor to doctor trying to find out what was the matter. These thing can get a lot worse if left un-treated. Saying I was tired does not even describe what I was-I don't have the word to really describe it. All I know is that over 4 years ago, all I could do was the very minimum of what I had to do. I could not go or watch a movie, because I never knew what happened. I never slept through the night. I did not go to any family or social outings that I was not forced to go to. I basically checked out of life. I made it to work, and back to my couch to sleep or zone out. That is no life at all for a young girl. I am so sorry she has to go through this.
 
Unfortunately many of us have experianced changes in the frequency and types of seizures. The brain seems to find new pathways for the 'storms'. It is often hard for the person with E to see the effects of the drugs on their personality...that is where you come in! It is imperative that you are diligent in noting the changes however subtle. Many times my husband notices the difference long before I do, then of course comes the 'is it the meds, or is it the seizures'. Either one could be the culprit but the meds are the usual suspect. Help your daughter learn her auras and or triggers-it helps. If you see personality changes, take action as it can be a long and hard slide :ponder: Be strong, be understanding and most importantly be educated! Fear of the unknown is the most scary :e: It has been a learning experiance for me and my family but life is not without joy and laughter is my best medicine (upright or not):banana:
 
Thanks very much for the welcomes and info. Unfortunaly the side effects are not visible to her but are very much so to my wife and I. Lathargic, zoned out (for lack of a better term) constantly tired, and of course moods swings at the drop of a hat. I would think the mood swings are closely resemble a 13 year old girl, without E, and I would think the drugs help push that fact of life over the edge. We have started the diet now. Thanks you very much RobinN for that info!!
 
You mentioned your daughter was diagnosed just 6 months ago. How did she deal with the news? In addition to her age, and the developmental changes her body is going through, (for those of you wondering about how metabolic comes into it - learn about your thyroid and all the body systems and functions it effects and why so many of the side effects of your meds are also symptoms of thyroid conditions), now she is also dealing with a grieving process in addition to the normal teenage stuff. Make sure your daughter, as well as you and your wife, read all the fine print on the medications. Start teaching her to be an advocate for herself and getting her to talk to the health care providers about her concerns, ask questions, etc. instead of you doing the talking for her all the time about her or the doctors talking to her about how things need to be "controlled". Please make sure you don't indirectly make her feel like she's someone you're disappointed in now this has happened. You may not think that, but that may be something that's relayed as you get frustrated trying to help her deal with it all. The Epilepsy Foundation (have a library you can borrow from), FDA, NIH, CDC, are all good sites also for research, as well as the Epilepsy research journals (Epilepsia) and University hospital websites. Good Luck and take care.
 
USRN39GS said:
You mentioned your daughter was diagnosed just 6 months ago. How did she deal with the news? In addition to her age, and the developmental changes her body is going through, (for those of you wondering about how metabolic comes into it - learn about your thyroid and all the body systems and functions it effects and why so many of the side effects of your meds are also symptoms of thyroid conditions), now she is also dealing with a grieving process in addition to the normal teenage stuff. Make sure your daughter, as well as you and your wife, read all the fine print on the medications. Start teaching her to be an advocate for herself and getting her to talk to the health care providers about her concerns, ask questions, etc. instead of you doing the talking for her all the time about her or the doctors talking to her about how things need to be "controlled". Please make sure you don't indirectly make her feel like she's someone you're disappointed in now this has happened. You may not think that, but that may be something that's relayed as you get frustrated trying to help her deal with it all. The Epilepsy Foundation (have a library you can borrow from), FDA, NIH, CDC, are all good sites also for research, as well as the Epilepsy research journals (Epilepsia) and University hospital websites. Good Luck and take care.
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Thanks very much for the tips! I think in the beginning she took the news surprisingly well. I now believe with the frequency of the seizures she knows its serious and has possibly went through some frustration over it. Its so hard to tell with her.....I haven't been through a 13 year old girls normal 'issues' as a parent before, so I am not sure. We try not to treat her differently but of course decisions are discussed a lot more in depth, that pertain to her everyday life. Again thanks for the info it will be used!!
 
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