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Thread: Tyler Update

  1. #61
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    Thanks Rose. Tyler has been pretty miserable the past few days. Just found out this morning that the urine sample we took in was contaminated by multiple bacteria. Have no idea how, but we took another sample in just to be sure. Something is really bothering him. Either shrieking, sweating, gagging and retching, and seizing or unresponsive. His temp lasted two days, which is pretty normal for him. The Primary Care doctor looked at the EKG at our last visit, and saw the abnormalities, but didn't think much of them. Too unspeciific??? We are losing hope they will ever figure out what is going on with him. His neuro thinks all of this is part of the progression of that illusive underlying disease that has never been identified. Wonderful. I just want him back to baseline.
    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."

  2. #62
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    ((((((Tamie, Tyler & Jerry)))))) ~

    Do you feel that the doctors are doing all that they can to determine the core issue causing Tyler's symptoms? And do you think that Tyler's neuro is correct that this is a progression of Tyler's underlying disease?

    Has his GI ruled out a gut problem? Bacterial infection in the intestines? Ulcers?

    Has a systemic yeast infection been ruled out?

    You must all be so utterly exhausted. I'm so sorry that things are not improving, even slightly.

    Continuing prayers, as 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.

  3. #63
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    ((((((Tamie, Tyler, & Jerry)))))) ~

    Hoping you'll stop by with an update soon. I worry about you, especially since you had a heart attack, Tamie. Never ending prayers continuing for all of 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.

  4. #64
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    I'm doing OK Rose. Tire more easily, but other than that, up and running. Tyler's 72 hr. EEG was a bust. They hooked him up to 27 leads and then sent us home with miniscule supplies to keep the leads in place. By Saturday night, we just gave up. All the leads were either off or coming off. They did not send extra glue, prep lotion or a diagram of where the leads belonged. I found one diagram on the internet, which helped some, but without the glue to hold the leads in place, it was a loss. Hopefully they got enough information to at least give them a start in figuring out what this young man is doing. Still having the daily AD episodes (I am listening to him scream, seize and sweat buckets while I am typing this). Still going unresponsive multiple times a day. On an up note, no UTI's in about two months. Yea! 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."

  5. #65
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    So glad you are still alright Tamie! I was worried too! That is crazy that made you do that at home without proper equipment. Outrageous.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  6. #66
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    Oh I'm so sorry it was such a bust! Crazy that they sent you home with no way to keep them or put them back in place. Kathleen absolutely hates getting those leads hooked up cries and fusses through the whole process. Wish they would come up with a better way to do this. I'm glad your doing okay... I so wish they could figure out what's going on with Tyler it just sounds awful. Breaks my heart...Thank you for the update please keep us posted.
    Mary Grace

  7. #67
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    ((((((Tamie, Tyler & Jerry)))))) ~

    Good news that you're ok, and I sure can understand the fatigue you're experiencing, given the constant stress. I hope that you're able to take time to rest. Also good news that Tyler hasn't had a UTI for a couple of months. May that continue to be so.

    What a shame to go through all of that to get a 72 hour EEG, and they don't give you what you need to conduct the testing. How infuriating! Did you do it over the weekend and were unable to contact them to get the necessary supplies? Those kinds of things always happen to us on a weekend or a holiday. I hope what you did capture will give some clues to help Tyler.

    Meanwhile the AD episodes and seizures continue ... I'm so very sorry.

    Prayers continuing for all of you ~ and please do keep us updated ~

    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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