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Thread: Tamie...

  1. #1
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    Default Tamie...

    Hi Tamie!
    I saw that you were here online. How are you feeling? I hope you're better!

    Thinking of you...., XDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Tamie & Tyler))))))

    Still praying for you daily. Please update us, when you have a moment.

    Always sending healing, positive energy your way ~

    Love & Light,
    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi. I get a little stronger every day. Been off all pain medication and no longer dread waking up in the morning. All good signs. I see the vascular surgeon the first
    week in September to see why I still have no feeling in my right leg or left hand. Both are getting very annoying. Have an echo cardiagram scheduled for the 6th (I
    think) and a followup appointment with the cardiologist on the 12th. Very busy few weeks. Since I am finally well enough, we scheduled Tyler's VEEG and MRI for
    September 26th through the 28th at Kaiser Sunset (Los Angeles). Not thrilled with spending three days in the hospital, but looking forward to seeing if there are any
    changes in Tyler's brain and brain waves. His seizures have been awful every since the UTI that put him into the hospital last month. Thanks for asking.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    (((((Tamie & Tyler))))))

    Good to hear that you are improving Tamie, and I hope that your doc can remedy the numbness in your leg and hand (opposite sides too ... ???). I'll be praying that you pass all of your tests with flying colors.

    Do the docs feel that Tyler's current seizure activity is tied to his last UTI? To the meds used to treat it? Poor guy. I will pray that the tests will be revealing and helpful in getting these seizures under control, and that the 3 days fly by quickly.

    Peaceful and restful thoughts are on their way for you and Tyler and your family ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi Rose. Tyler's neuro doesn't know what to make of Tyler's seizures. He is having atonics (drop seizures) and we haven't seen those since Tyler was a toddler, and that is on top of his myoclonics, tonics and petites. He seizes so bad in the mornings when he wakes up that he is in a sweat from the constant activity. We tried raising his dilantin dose for a week with no change. His neuro didn't think it would work, but it was worth a try. It is possible (and very likely) that what we are seeing is a
    progression of the underlying disease. It's hard to watch him seize like this and not be able to help him. He is getting about 45 mg of diazapam a day now just to try
    and give him some relief. He still has his marvelous smile and that makes every day worth while.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Tamie & Tyler))))))

    Did you recently add Felbamate to his AED cocktail? I'm trying to recall now from the old forum...it seems you mentioned adding another medication. Is it possible that the increase in atonics correlates to the new medication?

    As you know, all AEDs are dicey drugs, and sometimes they can increase seizure activity or even promote new seizure types. There is also the interaction between AEDs to consider.

    After 22 years of solid, daily seizing, which started with atonics and progressed to every seizure type, including gelastic, I feel that Michael's condition was the perfect example of the Kindling Theory, that "seizures beget seizures." One of Michael's neuros analogized it to a record with a scratch on it. The needle gets stuck on that scratch, until it creates a deep groove, then the needle skips to the next groove, creating a deeper, wider crevice. Like you, I helplessly watched this happen.

    So, I truly understand the consideration of disease progression. Still, you know me, I always look at the "evil" drugs first! ;)

    I don't recall Dilantin as the drug of choice for atonics. I know that Depakote was touted as the best drug for that back in the 80's, when we started Michael on Depakote. But by the time he started it, he had advanced to other seizure types, thanks to the panoply of drugs his first neuro experimented with on Michael.

    Isn't it amazing how our boys can give that radiant, beautiful smile every day, despite the ordeals they endure? I have no doubt that Tyler's incredible smile lifts you up and mends your heart daily. God Bless him and you.

    Know that my thoughts and prayers continue to be with and for you ~

    Love & Light,
    Rose

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    We tried Felbamate, but Tyler didn't tolerate it. He started gagging, retching and trying to vomit all night while he moaned and seized. That was day 1. Not a good
    choice for Tyler. He has failed on 20 drugs so far. He has been on Dilantin since birth and we tried Depakote when he was two. It was actually his miracle drug until it attacked his liver after four years using it. One neuro told us that Tyler's brain has patterned itself to seize after so many years of this and no drug will stop the seizures. I think he is right.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Tamie & Tyler))))))

    I've been praying that Tyler's seizures have ceased or at least slowed down considerably.

    I know what you mean about trying different drugs with out success. And I know that several of the ones we tried for Michael made his situation much worse.

    I'm so sorry. If only there were a food to avoid or to try, or an herb that would help, or a vitamin that would be beneficial ... this was always my longing and hope for Michael, and I feel the same for Tyler.

    My thoughts and prayers for you both continue.

    Love & Light,

    Rose

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