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joan joan is offline

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Showing Visitor Messages 1 to 10 of 28
  1. CathyAnn31
    08-07-2013 09:23 PM - permalink
    CathyAnn31
    I hope you and yours are doing well.
  2. joan
    01-16-2012 10:02 AM - permalink
    joan
    With juvenile myoclonic epilepsy, it seems to me, being tired and stress is a trigger for mine. Good sleeping habits, healthy eating, I do find helps. i wish you well**
  3. CindyJ
    01-16-2012 07:59 AM - permalink
    CindyJ
    Hi Joan,
    I am new to this forum and just read your posts. I have one kid diagnosed with juvenile myoclonic epilepsy and my other is showing possible symptoms.... No family history, either. i'm wondering if you have any advice?
    Thanks,
    cindy
  4. joan
    10-11-2011 05:07 PM - permalink
    joan
    Thank you! KInd of you *
    I hope all is well with everyone*
    joan*
  5. Bernard
    09-22-2011 07:27 PM - permalink
    Bernard
    Happy birthday!
  6. stephanieholly
    05-13-2011 08:02 AM - permalink
    stephanieholly
    Hello! I think I have seen your daughter doing videos on youtube about her Epilespy?! xxxxxx
  7. RobinN
    11-26-2010 09:49 PM - permalink
    RobinN
    Happy Holidays Joan. I hope you are all doing well.
  8. epileric
    09-22-2010 12:07 PM - permalink
    epileric
    Happy Birthday to you Joan. Here's wishing you the best on this day.
  9. joan
    04-18-2010 05:49 PM - permalink
    joan
    Hiya ** I hope all are well. All goes well here. Ive just had a few rough months and have been trying to work through things. Jena is well. Still on 500 keppra and MAD. Phillip doing well and almost ready to graduate from the Fire Academy. We are all so happy SPRING is here!
  10. Rae1889
    03-04-2010 12:56 PM - permalink
    Rae1889
    Hey Joan
    Hope Jenn is doing okay, and those bumps and bruises are healing. how long ago was the accident?

About Me

  • About joan
    Seizure Background
    I am the Mom of 2 children with epilepsy. Genetic. Shocking to find out after them both "seemingly" fine the first 15 years of both their lives.

    My son at 15 (he is now 25) had his first Grand Mal, JME. Hes on lamictal and Depakote . He is also at a neuro pshycologist who found he has high intelligence with low memory. We are using therapy to help. I was told his epilepsy was triggered by puberty. His EEG is clear epilpetic. He also has mild OCD, anxiety and depression at times. He also has an odd birthmark on his chest. Rare bi frontal spikes & waves. Due to the side effects of lamictal we are considering our options with meds and are scheduled to change, in hospital, 2/4/09
    Update: Phillip now 21 still on 500 lamictal and does ok. Jennifer now 18 and on 500 keppra and MAD. She does well and is mostly seizure free. Jena deals with bi polar at times. !! ACK!!!!

    My daughter is now 16 (almost 18 ) and it seems puberty is kicking in epilpesy for her as well. She has myclonic seizures (JME) and has started on lamictal as well. Her EEGs show inconclusive and the Video EEGS are not clear. MRI normal. She also has an odd birthmark on the inside of her arms. SID.. but does show a few signs of natural b*tchiness : ) but we love her anyway : ) **
    As of jan 23 and due to a lamictal reaction, inculding a 4 day hospital stay, JEnnifer is being wweaned from lamictal and onto keppra. I so hope this is the right thing. The Drs say this is the only med that may stop the myoclonics. Lowered her lamictal to 50mg a day as she had a bad day.
    We have no known genetic Es in either family, we are still researching my xhusbands family, but it doesnt really matter. I am still trying to sort out all types of info and figure it all out. I will work on this. Lets consider it a work in progress.

    11/13/2008

    My kids both on lamictal and after getting used to it (several months) seem to do well on it. My son is the process of having his license evaluated, to see if he can continue to drive. He was also turned down by the Marines and he is heartbroken.

    My daughter just on her 6th week of meds. Her myoclonics seem less but I do hope they stop all together. She seems to be taking it well and looks at it as a good thing as she can help her brother.

    Phillip
    started meds 1/2006

    Jennifer
    started meds lamictal 75mg 2x a day 10/2008
    First Grand mal 12/5 lamictal 150mg 2x a day
    Jan 23 rash reaction to lamictal, St Barnabus till 26th. weaning off lamictal onto keppra 500mg 2x a day plus 50 lamictal 2x a day till Dr order

    9/1/11
    Jennifer almost 18 now, on 500 keppra xtended daily. She had been on Modfieid ATkins for Seizures since 6/09 she is doing wonderful. It is RARE she has any seizures. We are so grateful to Dr Kossoff

    Phillip 21, on 400 lamitcal still. He does ok. Was able to complete fire school to become a voplunteer fireman but kinda lost on what he wants to do.. than he can.

    Courage, discipline, fortitude and integrity can do a great deal to make a woman beautiful.
    Treatments
    Son Lamictal/Deprakote Remaron and Daughter Keppa & MAD lexapro
    Location
    NJ Shore
    Interests
    Live, Laugh, Love
  • Signature
    Live, Laugh, Love

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  • Last Activity: 10-05-2015 01:27 PM
  • Join Date: 07-10-2008
  • Referrals: 2

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