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Thread: Tyler Update

  1. #11
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    ((((((Tamie, Tyler, & Jerry)))))) ~

    I wonder whether Tyler could have the procedure that Kathleen, Mary Grace's daughter, had. It might be more entailed surgery that a supra pubic cath. I don't know, but Mary Grace could share her experience with you.

    I would think that continuous draining of the bladder would be the preferred option with AD, even though the Urologist doesn't see the connection, because my research indicates that the bladder is a factor in AD. I hope that the bleeding has stopped and hasn't been disturbed with the 4 x day cathing.

    The shrieking and seizures, all that movement, requires so much energy. It is strenuous. So, that could be a factor in Tyler's weight loss. What was his weight at the nurse's clinic? Any possibility that Tyler is dehydrated? With all of that sweating ...

    I'm just so very sorry for all that you're going through, and I continue to pray for answers, healing, and relief.

    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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  3. #12
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    Just been busy and trying to catch up with posts here. I read through this thread and thinking all the way through about the procedure that Kathleen (thanks for mentionig it Rose)has had done as an option for Tyler. She had an appendicovesicostomy. A channel from her belly (sometimes they can use the belly button) was made using her appendix and attached to her bladder. Through this stoma we catheterize her every 3 hours. she can still go on her own so we try to let her go and then make sure her bladder is empty after she goes. sometimes she can go sometimes not and she never empties her bladder so it was backing up into her kidneys causing pain. It's so easy and she's never once had an infection. It doesn't even have to be sterile just clean. If you have any questions please feel free to ask. Sometimes this can be laparoscopic.
    Mary Gace

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    Never heard of this one Mary Grace. Thanks for the info. I will run it by Tyler's urologist. The past few days have been pretty miserable. Tyler is having one episode after the other which is resulting in a slew of seizures, more shrieking, sweating, erratic heart rate and B/P. Something has to give cause he can't keep this up. It is so hard to watch. I really don't think the indwelling cath is the answer for Tyler. Between the episodes and the seizures, Tyler is constantly moving and tugging on the cath. A sore formed at the penis opening from the friction and that is where the bleeding was coming from. Didn't see a huge improvement in episodes with the indwelling and definitely not seeing a huge improvement with the multiple cathings. Why can't thing with Tyler just be easy for once?
    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 & Jerry)))))) ~

    I'm so sorry that this ordeal continues for all of you. I pray for a resolution and relief. Sending you unending positive, healing energy and prayers for strength 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.

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    ((((((Tamie)))))) ~

    What's happening with Tyler? Please check in with an update!

    Thinking of and praying 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.

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    Sorry, been out of town taking care of my step-mom. Tyler is pretty much the same. Still having multiple daily episodes of AD. Had a conference call today with a new urologist. She will be working with our normal urologist on Tyler's case. They have suggested using Botox injections to try and stop the bladder spasms (if that is what is causing Tyler's pain and triggering the AD). During the conference, we discussed our options and the two areas Botox can be used. Neither sound wonderful to me. There is a huge chance that the injections will not stop the spasms, so the doctor has ordered a uro-dynamics test. They will insert a catheter into the bladder and the rectum, fill the bladder with fluid and monitor the bladder pressure and emptying to see if there are spasms. Won't necessarily be definitive because if Tyler is having a good day it won't show what is going on. They have to closely watch for AD and have something on hand to lower Tyler's blood pressure and heart rate if the test triggers an AD episode. Always so complicated. Tyler does really well when he is not having an episode, so we will see how all this plays out.
    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, & Jerry)))))) ~

    It's good to hear that Tyler is doing "really well," when he isn't having the AD episodes. That's a plus, for sure.

    I'm glad that you have a new urologist initiating the uro-dynamics test to try to get to the bottom of this issue. The test sounds unpleasant, so I pray that Tyler will be able to tolerate it. I will also pray that the test provides the necessary data to determine whether Tyler's is having spasms, and whether Botox injections are the best treatment for him.

    Please let us know when the test is scheduled and what the results are.

    Healing prayers on the way for all of you, including your step mom.

    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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  11. #18
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    Went to urology on Friday and had the indwelling cath put back in. The urologist still isn't convinced the bladder is the source of the problem and retrying the indwelling cath for another week is his concession to dealing with all this.

    Tyler's primary care doctor contacted the physical medicine doctor and they both decided that using baclofen is the way to go. I guess both of them forgot why we stopped using that drug in the first place. Using a muscle relaxer when Tyler already has a floppy airway is nuts. This is so very frustrating. I understand that Tyler is extremely complex, but someone has to figure out something to help him and do it in a way that doesn't compromise his airway or his seizures.

    Some days he is unconscious for hours at a time with Atonic seizures. This is the only seizure type Tyler has that has this effect. Honestly, we haven't seen anything like this since Tyler was a baby. Atonics always made me nervous. Tyler's looks like he is asleep; shallow breathing; lips puffing in and out; totally limp and lifeless. He will come back with a huge myoclonic jolt and then be gone again. I guess it is better than listening to him shriek but still.....

    Also had him weighed while we were in the clinic. He has lost four more pounds. Down to 114 lbs. His profuse sweating is the problem. His body is constantly working so hard between the AD episodes and the seizures, that he is always drenched in sweat. Looks like he runs marathons hourly. Need to give him gatorade or the like to replace his depleted electrolytes and find a way to add healthy calories to his diet to build him back up. We are battling on too many fronts.
    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, This all sounds so exhausting and frustrating! I can't believe that of all the Dr.s Tyler has not one will follow this through to the end and find out what's exactly going on and why. I think I mentioned this when we were going through some things with Kathleen's health that were baffling us but we need a "Dr. House" Someone who will look at every angle and every possibility without wasting time. I'm just so sorry this is going on for so long. Wish I could help but always keeping you guys in my prayers...
    Mary Grace

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    Thanks Mary Grace. I really appreciate the prayers.
    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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