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Thread: Tyler Update

  1. #21
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    ((((((Tamie)))))) ~

    I'm so sorry that this issue still continues without any inkling of a resolution. I agree with Mary Grace that it's incredible that Tyler's team of doctors can't agree upon the cause and the appropriate treatment for Tyler's AD.

    Why does Tyler's urologist only want to try the indwelling cath for a week? I think a month would provide more information as to whether it will help reduce Tyler's symptoms with continual bladder draining. The three urologists, who examined Jon at the hospital, agreed that an indwelling cath was a better solution for Jon, because, like Tyler, he is always going to need a catheter.

    I gather you said no to Baclofen and reminded the docs why it's not an alternative. Something that they, as physicians, should know anyway.

    Have the Atonic seizures increased significantly with the AD? Sounds very scary.

    There are lots of recipes for homemade electrolyte drinks on the internet. Much better and safer than Gatorade.

    Healthy high calorie meals ~

    https://www.healthaliciousness.com/a...meal-plans.php

    http://www.webmd.com/diet/how-to-gain-weight

    http://www.livestrong.com/article/29...r-weight-gain/

    Prayers for answers and for healing continue ~ Please 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.

  2. #22
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    Took Tyler in on Monday. They took his vitals for a baseline and a urine sample to be sure there was no UTI. All set for the 25th and the urodynamic test, OR, so we thought. Got a call yesterday from Kaiser.....Tyler's appointment has been cancelled. Apparently the doctor has been called into surgery that day. REALLY???? They will call us with a new appointment when one comes available. No biggie right!!!! In the meantime, Tyler is still having at least 2 or more AD episodes a day, every day. Some medical emergency. I am so ticked. This has been going on for seven months with virtually no help. So wrong on so many levels. We have an appointment this afternoon with the Physical Medicine doctor. Hoping he can be of some assistance. We are so not impressed with the care, or lack of, Tyler has been getting.

    Spent a week at the cabin and came home for the first appointment. Should have just stayed put. Tyler didn't handle the altitude well. Would wake up between Midnight and 3:00 every night unable to breath cause it is so dry on the mountain and stayed awake the rest of the night. A humidifier didn't even help him. Course, breathing difficulties causes less oxygen to his brain, which brought on more seizures. Spent the day unconscious with Atonics or jerking with myoclonics, or both and then went into AD episodes. Look out beach chairs and ice tea, here I come!!!
    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."

  3. #23
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    I can't believe the lack of attention Tyler has gotten through this. I remember going through some health complications with Kathleen and not feeling like some Dr.'s took it seriuosly enough and just allowed her to be "stable" but in pain and discomfort all the time. It may not seem like an emergency to them but when something has been going on so long enough is enough and get things done.
    Kathleen has had a couple of Urodynamic tests. It was very uncomfortable for her but at the time she didn't have the appendicovesicostomy. this meant using the typical catheter to fill her bladder. She takes Oxybutynin for irregular bladder contractions.
    Praying that the tests can be done soon and will give you some well needed answers.
    Mary Grace

  4. #24
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    ((((((Tamie)))))) ~

    Well, this sucks!!! How infuriating! I'm so sorry that you've waited all of this time, and Tyler's in shape to have the test, and then it's cancelled. I thought that Kaiser had improved its performance and provision of care, but that doesn't seem to be the case. Did you get any help from the Physical Medicine doc yesterday?

    And I'm sorry that Tyler didn't tolerate the altitude in the mountains. I hope that he's doing better now that you're home again.

    Your chaise is reserved



    and your awaits you ~

    Healing prayers and prayers that the medical community actually does something to help Tyler ~

    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.

  5. #25
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    Thanks guys. Got a call yesterday. The urodynamic test is rescheduled for August 12. Still waiting to hear if he has to have another sterile urine sample taken to rule out any infection two weeks prior to the test. His Physical Medicine doctor was very disappointed to hear about the cancellation. He is leaving Aug. 1 for Hawaii on a leave of absence and won't be back until sometime next year. It just keeps getting better and better.

    That chaise and ice tea look pretty inviting right now. Tyler's mom and siblings come in next Tuesday. I was hoping Tyler would be feeling better before they came, but no such luck. I wonder how my daughter is going to react to Tyler's shrieking in a total AD episode, much less going unconscious for long periods with the Atonics. This is not going to be relaxing. Oh, and Tyler is back down to
    112 lbs from the constant seizures, sweating and stress on his body AND he may have an ear infection (which would explain some of his difficulty in the altitude....Wonderful!
    Last edited by Tamie; 07-15-2016 at 02:46 PM.
    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."

  6. #26
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    ((((((Tamie)))))) ~

    For crying out loud! How about another urologist, who can perform the urodynamics test sooner? Is that possible? This is absolutely unacceptable. And the only doctor, who seems to care about Tyler, is going on a sabbatical to Hawaii? Is there any kind of an appeal process through Kaiser? What would happen if you presented at the ER and demanded a Urodynamics test? I know it's a radical idea, but I'm feeling desperate for you and Tyler and Jerry now.

    And what guarantee do you have that the urologist won't have a surgery on 8/12? Does Kaiser have an ombudsman? An appeal process?

    Would it help your daughter seeing Tyler have AD episodes and Atonics, if you videoed them and sent them to her? At least then she might have a better idea of what to expect. Just tossing that out there for pondering ...

    Many healing and hopeful prayers are on their 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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  8. #27
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    I'm so sorry! That's awful!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  9. #28
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    The Urologist that is performing the urodynamic test is head of that department. She wants to do the test herself because she is interested in Tyler's case. She could have passed it on to someone else, but I trust her judgement. So we wait. Tyler had 4 nasty AD episodes yesterday and already had his first this morning. We are walking on eggs around here. Tyler is wearing out. Watching him unconscious from the Atonics is almost a blessing. I did watch his pulse yesterday during an atonic episode and he was sating in the mid 80's. I knew his breathing was labored and shallow, but had no idea how low his pulse was going. Sure explains why he sweats so perfusely. He was drenched for most of the day. Even the Physical Medicine doctor told us to stay away from the ER with Tyler. They had no clue what to do with him and just made matters worse. They all want to stop his seizures and ultimately overmedicate him to the point of his vomiting. You cannot stop the seizures, never have been able to. Add the other problems and they really freak. We do better on our own at home. At least we know what works and what doesn't, his every seizure type, what he does during an AD episode. It goes on an on. Frustrating, but endurable.
    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."

  10. #29
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    ((((((Tamie)))))) ~

    The ER idea was a last resort thought. I was only thinking of getting the test, not having ER docs assess him for anything. I know you do better at home. We do too.

    When you referred to "sating in the mid 80s," are you referring to Tyler's O2 SATS or to his heart rate? Mid-80s isn't a low pulse/heart rate, but it is concerning with regard to O2 SATS. If he's working hard to breathe, his heart rate should elevate to the 90s - 100s (which is what happens to Jon).

    I'm so sorry that Tyler continues to have these horrible AD episodes and seizures. Since the urologist is interested in Tyler's case, do you think she might respond, if you call to tell her that the episodes continue and Tyler is wearing out, by fitting Tyler into her schedule for the test, or notifying you if there's a cancellation before 8/12? In other words, begging?

    Thinking of you and continuing to send healing prayers ~

    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.

  11. #30
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    Tyler is Sating in the mid 80's during the Atonic seizures, which can last an hour or more. His heart rate is usually above 100, while his blood pressure can drop into the lower to upper 80's/lower 40-50's. They are more worried if his blood pressure sky rockets close to the 200's during an AD episode. That could cause a heart attack or stroke. It is one thing they will watch for during the urodynamic test. I wish them luck getting a blood pressure during an episode. Virtually impossible. He's seizing during the episodes and moving constantly. Not exactly conducive to getting a blood pressure.
    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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