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  1. #1
    Missouri Star

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    Mar 2012
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    Just outside of St. Louis in rural Missouri
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    Default We finally have some answers.

    It isn't great news, but could be a lot worse. We found out today what they believe are the cause for Gabes recent seizure activity. He has had 3 in the last 6 weeks. The do not believe they are cause from his TBI. They believe it is something called Benign Rolandic Epilepsy, with centrotemporal spikes. It most commonly spikes at the age he is currently, almost 9. They also believe that he will outgrow them by the time he is between 14-18. The cause is thought to be genetic, and since we know so little about his abusers family...we have no idea about any of that. The plan is to increase his seizure meds a little at a time, to get them completely under control. They may even change the one he is currently on. They are also most likely to occur upon his going to sleep, or waking up. All of those so far, that we are aware of, have happened after he has woken up in the morning. He has begun doing these severe leg twitching in his sleep, so he will also have to undergo an overnight EEG study to see if those are also small myclonic seizures.

    So as bad as it sounds, I am basically happy with the news. I have faith that he is not going to have a lifetime of multiple daily seizures , and he will most likely outgrow them over time. We just need to get his meds regulated, and try to keep him seizure free.
    Thank you to all of you who so diligently pray for my grandson and his family. It truly means the world to me.
    Blankets wrap you in warmth, quilts wrap you in love

    Marilyn......

  2. Thanks SallyO'Sews, mommadeb, SuzanneOrleansOntario thanked for this post
  3. #2
    Missouri Star

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    Oct 2013
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    West Viriginia
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    Default Re: We finally have some answers.

    Im glad that it is hopeful auntiemern. It's all so scary

    Women are Angels.
    When someone
    break's our wings
    we will continue to
    fly...usually on a
    broomstick.
    We're flexible like that.
    - embroitique

  4. #3
    Missouri Star

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    Jul 2013
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    Colorado
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    Default Re: We finally have some answers.

    Thanks for the update.

  5. #4
    Missouri Star

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    May 2013
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    Always on the road
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    Default Re: We finally have some answers.

    Been waiting and watching for the update. You'r right - it is good news that a medication regulation issue and that he will eventually outgrow the seizures. Nice to know they are monitoring him so closely and there is further investigation and testing to be done.

    Strength to Gabe, his family and you Marilyn. Stressful time but promising results!

  6. #5
    Missouri Star

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    Dec 2013
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    Missouri
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    Default Re: We finally have some answers.

    Thank you for the update. Prayers for the sweet little boy.

  7. #6
    Missouri Star

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    Apr 2012
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    Northern California, USA
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    Default Re: We finally have some answers.

    Marilyn, I'd missed your posts on Gabe's seizures. But I'll start praying now! He's such a sweet little boy.
    Toni ... If I keep sewing long enough, will they make their own dinner?

  8. #7
    Missouri Star

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    Apr 2013
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    Germany, NRW
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    Default Re: We finally have some answers.

    Marilyn, I am glad to hear that it is not as bad as it could have been. It sounds like the doctors will be able to deal with it and that's good news. Sending more positive thoughts and hugs.

  9. #8
    Missouri Star

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    May 2013
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    Default Re: We finally have some answers.

    I'm so glad, well I guess relieved is more like it, to hear this news about that sweet little guy. I've actually known kids that have outgrown epilepsy, so it makes gives me confidence that Gabe's gonna be ok. We'll keep those prayers coming for your little buddie Marilyn.

  10. #9
    Missouri Star

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    Apr 2016
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    Default Re: We finally have some answers.

    So thankful for you and your family for the diagnosis.....looks like an end in sight....eventually he'll out grow it....what a blessing!
    Wonderful news. Love and hugs to you all....such a journey.

  11. #10
    Missouri Star

    Join Date
    Jan 2012
    Location
    Missouri, but not close enough to MSQC!
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    Default Re: We finally have some answers.

    Continued prayers for Gabe and your family.

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