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Thread: Mickey, how's your ds doing???

  1. #1
    NancyR's Avatar
    NancyR is offline INCIIDer - A Community Creator
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    Default Mickey, how's your ds doing???

    Any changes? HUGS! N

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    mickey2 is offline INCIIDer - A Community Creator
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    Hi nancy

    Thx for asking. Its not any better. Hes having more episodes now for unknown reasons. For niw we decided on lamictal but i want him at home for the 1st 24-48hrs of it so we havent started it yet. This week he has adventure camp and has been waiting all summer for it.

    Still waiting for appt with neuropsych and mito doc is reviewing his chart too. All seem to agree that hes at high risk for adverse reactions.

    My nerves are shot and the chrons and lupus are flaring simtaneously so ive been trying to take it slow.

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    We used Lamictal for Ian. Took it very slowly getting him up to his current dose of 125, 50, 200. We did have reactions. At one point we landed in the ER for Double Vision. Lamictal has cut Ian's seizures dramatically. We are currently looking at adding zonegran or tegretol due to breakthroughs.

    Keeping you in my thoughts!

  4. #4
    NancyR's Avatar
    NancyR is offline INCIIDer - A Community Creator
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    Default LM! So sorry to read this, I've been thinking of

    McK!!! Hugs to you too, so sorry this is happening! Hoping they'll find the right combo for him!! Hoping Adventure Camp is going well too!

    This rollercoaster is something else, huh??

    Many, many heartfelt hugs to you!! XOX! N

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    trek is offline INCIIDer - A Community Creator
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    BriNJ is offline INCIIDer - A Community Creator
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    Hugs L... sorry to hear this A next door is on lamitical and has done very well so far, no reactions or seizues.

    Big hugs- keep us posted please

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