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Thread: Tyler's birthday

  1. #1
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    Default Tyler's birthday

    22 today. Spending it at the clinic hooked up to a 6 hrs. EEG. Yippie, only 3 more hours to go. Happy Birthday sweet boy. You are amazing.
    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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    Thumbs up Happy Birthday Tyler!

    HAPPY BIRTHDAY TYLER!

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

    By now, I hope that you are home resting and recovering from the 6 hour EEG.

    You are amazing, courageous, and beautiful, Tyler. I pray that this year brings answers to resolve your issues and that you may be healthy.

    God Bless You ~

    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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    HAPPY BELATED BIRTHDAY TYLER!!! I hope you enjoy being 22 and can finally get relief. How did the EEG go?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Well, Tyler has another UTI. Took a sample in last Saturday and found out someone dropped the ball and didn't culture it. Took another sample in today. They have put him on Keflex until they get the culture back. Love incompetence.

    We have been told for years that Tyler's seizures start so deep in the brain that they are hard to see on an EEG. Never been a question that what we have witnessed over the years have been seizures. The last EEG was no different, except this time the neurologist has decided that since the seizure like movements don't correlate with seizures on the EEG, Tyler isn't seizing. Taking him off the Dilantin he has been on for 22 years and wants him to see a psychiatrist and be put on anti anxiety meds for behavorial issues. Seriously. The psychiatrist office called yesterday for the initial consult and asked if Tyler is suicidal, self injurious or capable of injuring others. All I could do was laugh. She thought I was strange, but really...... this is going to be interesting. Told her she is going to have to meet Tyler to understand my reaction to all of this. I can hardly wait for the first face to face interview. Yet one more specialist passing us on to another specialty cause they don't know what to do with him. So done with all of this.
    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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    Happy belated birthday Tyler .

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  8. #6
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    ((((((Tamie)))))) ~

    Does the neuro realize that Tyler is diagnosed with Ohtahara Syndrome? How many neuros has Tyler seen in his 22 years? Did any of them ever say that he is not seizing? I'm baffled by this new diagnosis. I hope you aren't taking him off of Dilantin. And a psychiatrist for behavioral issues? This is just absurd! Wow! So, are you going to take Tyler to the psychiatrist? I'm just shaking my head at this one.

    So sorry that he has another UTI. Healing prayers continuing ~

    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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    This is the Neuro that originally diagnosed the OS. The biggest problem is that the majority of OS kids pass before their 5th birthdays. There are only a few kids around the world that have survived as long as Tyler has. There is no research, no protocols, no treatment and little understanding about what comes next. We know Tyler is seizing without a doubt. Been watching him 24/7 for 22 years. We are slowly weaning the Dilantin over the next several months and watching him closely. There is no way Tyler is anxious. They are trying to find a way to reduce the AD episodes and prevent Tyler from shrieking for hours on end. No real plan, just more trial and error. No idea why psychiatry, other than more informed about that class of drugs. We do NOT want him sedated and will refuse any drug that would reduce what's left of his quality of life.
    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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  11. #8
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    ((((((Tamie)))))) ~

    I wonder whether the other surviving OS individuals have recurrent UTIs and/or AD. They and Tyler should be studied, so that children born now with OS have precedents to help them.

    I just Googled a little and found some sites, which may or may not be helpful to you. Just wanting so much to find something that will benefit Tyler.

    Forum for people on Dilantin who have AD:

    http://www.ehealthme.com/support-gro...c-dysreflexia/

    Article about UTIs and AD:

    http://www.medscape.com/viewarticle/492771_5

    Discussion on AD and antibiotics:

    https://treato.com/Antibiotics,Auton...sreflexia/?a=s

    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.

  12. #9
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    Quote Originally Posted by Tamie View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Well, Tyler has another UTI. Took a sample in last Saturday and found out someone dropped the ball and didn't culture it. Took another sample in today. They have put him on Keflex until they get the culture back. Love incompetence.

    We have been told for years that Tyler's seizures start so deep in the brain that they are hard to see on an EEG. Never been a question that what we have witnessed over the years have been seizures. The last EEG was no different, except this time the neurologist has decided that since the seizure like movements don't correlate with seizures on the EEG, Tyler isn't seizing. Taking him off the Dilantin he has been on for 22 years and wants him to see a psychiatrist and be put on anti anxiety meds for behavorial issues. Seriously. The psychiatrist office called yesterday for the initial consult and asked if Tyler is suicidal, self injurious or capable of injuring others. All I could do was laugh. She thought I was strange, but really...... this is going to be interesting. Told her she is going to have to meet Tyler to understand my reaction to all of this. I can hardly wait for the first face to face interview. Yet one more specialist passing us on to another specialty cause they don't know what to do with him. So done with all of this.
    I laughed at the absurdity of this. Typical doc telling you its a mental problem when they can't find an immediate answer for the true physical problem. It is truly disgusting that they assume Tyler's obviously physical issue is "behavioral". I have to wonder if he is one of those types that assumes the severely disabled are depressed because of the disability. Stick to your guns. Do what you know is best for Tyler!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  13. #10
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    That is the most ridiculous thing I've ever heard. What is the psychiatrist think he/she is going to get out of someone who is completely nonverbal? Not to mention, how is he going to injure himself or others if he's a quadriplegic? This is definitely a head scratcher.

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