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JME"...... Levetiracetam?

Posted , 5 users are following.

Shelly0069
Shelly0069

Hi all my 15 year old daughter has been diagnosed with JME juvenile myoclonic epilepsy, and just started taking the above medication. 

When she had a seizure only happened when she had a period usually in the AM time.....however 2weeks ago she had a seizure THEN this morning Another seizure so intact more seizures taking this medication than before when she was on NO medication?

i have however rang her consultant and waiting for him to call me back...I'm at my watts end with a thousand questions that I have no clue with the answers? If that makes séance?

why has she had another seizure? I know medication takes time but to have anther seizure again doesn't make séance I thought they helped reduce the amount NOT have more!!!!

my partner says they aren't working I don't know what to think?

i will continue to have her take them just ARE they working ... Do I give them time it's very frustrating,

may I ask as a parent has anyone who is currently or have had this drug give me some advice 

she will be coming up2her 7 week 15 years old and having loads of sleep so I know that it's lack off her sleep

many thanks

1 like, 4 replies

4 Replies

  • sarah_36431
    sarah_36431 Shelly0069

    Posted

    hi shelly

     your not alone here ... im 19 and iv been taking levetiracetam for over 3 years now. ive gone up in dosage from 250mg to 1000mg plus im starting the ketogenic diet ..... its worth looking into. seizures as you probly know by now are a very complicated thing, and although doctors and consultants have alot of infomation on it .... they will admit theres still a very lot they dont know. this medication has only been around for 40 years or so ... so thats as far as the reaserch goes..... there are many side effects .... but please God the siuzures will stop with the right dosage of meds .

    doctors in the UK are recomending the ketogenic diet for children ... its worth pushing for it ( i have it harder coz their not keen to try it in adults). your daughter may need an aditional medication to keep her stable. 

    wishing you the best of luck, feel free to post any questions you have. 

    Sarah 

  • Winnie143
    Winnie143 Shelly0069

    Posted

    When I was young many moons ago , good memory I have !!

    I reached puberty and had a fit and they said it was my age and sent me home. Then I had another and Doctor put me on phenobarbitone in those days.

    Get her pills sorted ie what suits her, not what they want to try her on.  As all my life I have had different pills  First Librium with phenobarb, then Valium with phenobarb then they put me on Epanutin and my teeth started to become loose Grrrr.  So make the choice for Daughter and be strong if you feel keppra makes her sleep as it does me then get her off them PDQ xx   Don't be bullied by the Docs as you know your own child, still have them and still on phenobarb with Keppra and the Docs messed with my pills and I had the first one in 6 years another grrr read up on the pills and Good luck to you and Daughter xx sorry if I rambled on xx Good Luck

    Win xx

  • Winnie143
    Winnie143 Shelly0069

    Posted

    Also meant to say if I get up without any jerking of arm it means normally I will be okay today, there has been the odd occassion but few and far between xx
  • kory.alex96
    kory.alex96 Shelly0069

    Posted

    I had 2 grand mal seizures a week ago from today. Been on keppra since and smoked pot 3 times. No seizures since
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