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Thread: Tyler's birthday

  1. #11
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    Follow-up to my last message. What you need to do is get him into the hospital, DC all of his meds, and hook him up to a video EEG. It's going to take more than just six hours, it may take a few days, but hopefully something will show up that they can work with. And if this doctor doesn't want to do it, go find another doctor. Tell him you're going to go for a second opinion. He sounds like he just wants to argue with you, and that's not good. Keep us all posted.

  2. #12
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    We ditched the psychiatrist this week and took Tyler off the antidepressnts. They did nothing for the AD episodes. Going to increase the Dilantin dose to see if that will help the nasty seizures. We know Tyler is seizing, no doubt. Have multiple video clips showing what he is doing, including the unconscious episodes (which we also believe are seizure related). Oddly enough, most doctors don't want to see them. So aggravating. The neurologist is retiring, so this is a perfect time to get some fresh eyes.
    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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  4. #13
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    Quote Originally Posted by Tamie View Post
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    We ditched the psychiatrist this week and took Tyler off the antidepressnts. They did nothing for the AD episodes. Going to increase the Dilantin dose to see if that will help the nasty seizures. We know Tyler is seizing, no doubt. Have multiple video clips showing what he is doing, including the unconscious episodes (which we also believe are seizure related). Oddly enough, most doctors don't want to see them. So aggravating. The neurologist is retiring, so this is a perfect time to get some fresh eyes.
    Glad he's off the anti depressants.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  5. #14
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    ((((((Tamie)))))) ~

    I see what you meant about Tyler being treated like a medical experiment by his multitude of physicians. While I'm sorry that the antidepressants didn't help with the AD episodes, I am not surprised.

    It's probably a blessing that Tyler's neuro is retiring. I hope that you can find a younger neuro, with an interest in Tyler's complex issues, who will really delve into the potential causes of his AD, which are clearly exacerbating his seizures.

    I'll be praying that the increased Dilantin will reduce the seizures significantly.

    Many prayers for you, Jerry and Tyler always ~

    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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