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Old 12-01-2011, 08:30 AM
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new to group hello all


Daughter diagnosed with epilepsy at 10 1/2 had 2 grand mal seizures then put on keppra been on it for a year now just devloping absence seizures grand mals occured very early am.(500 am) My daughter has not been the same child since taking keppra and going to wean her from it and start zonegran. Very nervous about taking her off and causing a seizure she is so mean and nasty with the keppra for the sake of her mental status and our family we are going to try this new drug. There is no family history of seizures no tumors no head injuries. She has gained so much weight has horrible rages now 13 so we are aware that some teen crabbiness is involved but the outbursts and crying is heartwrenching and she is really mean to her sisters 11 & 8 ALOT. Being diagnosed so much later I know there is a child inside that is my real daughter she is such a great kid I hate this poison we give her we have tried the modified atkins diet as well and B6 for the moodiness. I would love to hear any advice very frustrated getting her and the family involved in seizure support group is our next step. Does she need a therapist? Do I? Everyday its an emotional rollercoaster with her mood swings!
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Old 12-01-2011, 10:36 PM
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Hi grootie, welcome to CWE!

Keppra is well-known for causing extreme moodiness and "Kepprage", so I would wait and see if your daughter is happier on another med before trying therapy. It can often take a bit of trial and error before finding the best med for seizure control. I hope Zonegran does the trick -- it is an appetite suppressant, so your daughter may lose weight on it. It sounds like this may be a good thing, but if she starts eating less it's important to make sure she continues to get proper nutrition, and drinks plenty of water. Her neurologist should do tests for metabolic acidosis before and after she goes on the Zonegran. More info about that here here: http://www.fda.gov/Drugs/DrugSafety/.../ucm095251.htm

Best,
Nakamova
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Old 12-02-2011, 09:34 AM
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Red face


Thanks for the link it was very helpful. Does anyone have any input with diastat and this drug. We have it just in case of gran mal happening we have had to use it . My neurologist feels she doesnt need bloodwork prior which i am pissed off for because my husband has a history of kidney stones. I am looking forward to a different mental status once she has gotten off the keppra really nasty stuff. I have already made an appointment to see a different neurologist according to that website fda has not approved zonegran in peds patients WTH is with my doctor! this site is great! I pray for everyone and welcome all insight! thanks for the vent session
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Old 12-02-2011, 10:16 AM
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There should be no problem using Diastat on an emergency basis while your daughter is on Zonegran. Hopefully, she'll have seizure control, and you won't need to use it! I hope your daughter can transition to the Zonegran smoothly. Keppra has a relatively brief half-life, so once she's off of it altogether, she should start to improve mood-wise within a week or so.

It's definitely important to find a neurologist who will listen and be responsive to your questions and concerns, so you're doing the right thing in getting a second opinion.
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Old 12-02-2011, 10:30 AM
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Grootie,

Welcome to the forum!

Keppra is infamous for causing anger and outbursts. Even with counseling only a certain amount of them would be under her control. I was on Keppra and I'd just snap. I'd rage and there was nothing I could do about it. Hopefully the Zonegran will be better.

In the meantime here's a link to the package insert for Keppra. It's from the National Institute for Health (NIH) website. It will tell you what percentage of people experience each of the different side effects. Notice that emotional lability (rapidly changing moods), anxiety, and hostility are all listed.

http://dailymed.nlm.nih.gov/dailymed...937#nlm34084-4

Here's a link to the package insert for Zonagran. It has a higher incidence of side effects, but that doesn't necessarily mean your daughter will experience those side effects. Everybody is different and she could be perfectly fine on it. In fact according to the stats most are.

http://dailymed.nlm.nih.gov/dailymed...aae6a5426a19c7

I hope your daughter is feeling better soon.

Last edited by Endless; 12-02-2011 at 10:37 AM.
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Old 01-06-2012, 09:07 AM
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hello all and happy new year. So my 13 y/o daughter is almost fully off keppra and I just wanted everyone to know I feel like my child came home to us. We have been fortunate to know her personality for 11 years before she started taking keppra so her being on the keppra was horrific! We have since found a new neurologist who actually listened and she is taking zonsimade>few small setbacks once in a while she forgets but wakes up everyday so happy and looks forward to her day. I feel her quality of life is so much better and her emotional well being has changed so much after getting away from keppra next stop another eeg but we get to do it at home the hospital hooks up at night go home and come back also was not aware there was sublinguinal klonepin for school purposes instead of diastat. Looking forward to 2012 what the hell was our last doctor doing for us?
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Old 01-06-2012, 09:46 AM
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Such great news grootie! Just goes to show how much damage the wrong medicine (and the wrong doctor) can inflict. I hope you and your daughter have a terrific new year, and that it just keeps getting better.
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