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Thread: CN Central: FEBRUARY UPDATES

  1. #21
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace)))))) ~

    I would love to see the photo of Kathleen feeding Grace. What a precious story and just proves that Kathleen is very exceptional. Animals know ~ they protect and love. I'm glad to hear that Kelly is recovering well and will pray that her pain subsides very soon.

    ((((((Tamie, Tyler, & Jerry)))))) ~

    I'm sure that you are all beyond exhausted, and the stress must be absolutely horrid. Motrin is hard on the gut and the liver. Valium affects BP and SATS. What a bind you are in! I'm so very very sorry.

    Do you still feel that Tyler is having Gelastic seizures?

    Has he seen a GI or had a GI workup just to rule out a gut issue?

    Is Tyler taking a probiotic? He's been on lots of antibiotics for so long, that it's possible that his system is imbalanced. He could have a systemic yeast infection. Has that been explored?

    I'm trying to come up with ideas to help, and I'm running out of them.

    Jim and I keep remembering Michael's 8 month episode of screaming and shrieking in the 1990s, and his neuro gave Michael Haldol, which made it worse, so we discontinued it. We had no idea what was wrong with Michael, or why it was happening. His neuro couldn't have been less interested. Then, as suddenly as it began, it stopped. I pray that this is the case for Tyler. That it just stops.

    Please know that my prayers for all of you continue. And please let us know what Tyler's doc says in response to your email.

    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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    We are at a total loss Rose. There is no pattern to the episodes. They just seem to pop up randomly and last for an hour or more. Could it be gelastic seizures? Sure. With Tyler, always a possibility. We are starting with his primary care doctor and going from there. Much easier than contacting all of the specialists and hoping for a rapid appointment. Tyler has been getting probiotics for a very long time. It was suggested by his gastro doc when he started getting monthly doses of antibiotics. We are all running out of ideas. Doesn't help when all the blood work came back normal, as well as, the CT scan of his abdomen. Maybe an ulcer? Don't know if that would have shown up on the scan or not. Muscle spasms? Gall stones? Joint pain? The list is endless, but trying to validate any of them is the problem and getting the doctor to pursue the search is questionable. They just throw up their hands and give up out of frustration or the hopes that the episodes will just stop. I don't think I can post a video here, but maybe if people saw what is going on, they would have some idea of the cause. I am hoping the doctor will look at the video from Saturday night. We'll see what he has to say this morning (that is, if we hear from him).
    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, I'm so sorry this has continued... It's all so frustrating and exhausting I"m sure. I hope the dr. today can start some kind of process to get a diagnosis and stop the episodes. Please keep us posted. Healing prayers headed your way.
    Mary Grace

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    ((((((Tamie, Tyler & Jerry)))))) ~

    I'm glad that Tyler is on probiotics. A good call by the doctor. And they shouldn't throw up their hands and give up! Until they have ruled out every plausible possibility for Tyler's pain and episodes, it's their job and their oath to keep searching. It infuriates me when doctors say, "I just don't know," or "We've done all we can." Medicine isn't a one size fits all practice. They should leave no stone unturned.

    I wonder whether it would help to have Tyler hooked up to an EEG during these episodes. What might that show, if anything? What about a CT scan of his brain? An MRI of his brain? Would those tests reveal anything? Something to ponder and possibly ask his Primary and neuro.

    It is possible to post videos here (use Go Advanced, not Quick Reply). Mary Grace has posted videos, so she'd be the expert to consult.

    Click on the rectangular blue icon:

    Attachment 4433

    This window will appear:

    Attachment 4434

    Did Tyler's doc reply to you today?

    I wish that I had a magic wand to make all of this go away. Instead, I will continue sending healing energy and prayers 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.

  5. #25
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    Tamie, Prayer that you can get this resolved... Keep us posted... It's heartbreaking to think that he is in pain. What happened to the compassion that should keep a dr. working at a diagnosis. I know how it feels to be clueless and know that there is something very wrong. It was those times I wished for a real life Dr. House! You can post a video pretty easily. It's just like posting a picture only click on the icon right next to the picture one, it looks like a "film strip".

    Rose here's the picture of Kathleen with Grace. I think she spent a half an hour sitting with her. and feeding her little pellets one at a time.WP_20160223_002.jpg

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    Well, saw Tyler's Primary Care doctor today and not real happy with him. Just as I expected, he has no desire to pursue the cause of Tyler's pain. Refused to look at the video cause he say he still remembers the first one and he didn't want to see it again (heaven forbid I should upset his day), and all it shows is that Tyler is in a great deal of pain. Asked what more I wanted him to do cause the blood work and CT scan is normal. Uhhh, maybe his job? Told me I was becoming combative and did not listen to a word I was saying. To put it mildly, I was furious with him. He did order a chest Xray (more to appease me than anything) and gave us a prescription for liquid Vicodin. Wants us to contact the Neurologist and see what he says. Don't think he is going to be Tyler's doctor ever again. Tyler has been shrieking since 4:00 this morning, but of course, he was quiet during the office visit after getting Motrin and Diazapam. Started up again when we brought him home and the nursing supervisor for respite was here. She couldn't believe how much pain Tyler was in. I tried to post the video, but for some reason, it won't upload to this site.

    OK Rose, where is your umbrella and margaritas? Days like this make me wish I drank.
    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."

  7. #27
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie, Tyler & Jerry)))))) ~

    I am so very sorry that Tyler's PCP treated him and you so terribly. How shameful! What do you want? You want relief for your precious boy, and for you, so you can all sleep and have some peace, for crying out loud! Oh, he would have gotten an earful from me, boy howdy! I wonder how he would react, if he were in the same situation. Combative! Wow, what a lack of compassion. I'm so very sorry.

    Vicodin is Tylenol and hydrocodone, in case you didn't know. I've noticed that you're giving Motrin to Tyler, so I just wanted to mention the Tylenol, in case he can't tolerate it. And are there any interactions with any of the other meds he's taking?

    Is there anything that the nursing supervisor for respite care can do to help you help Tyler? Or Tyler's Regional Center Case Manager? Call in all of the help and support you can find.

    My heart and prayers go out to you, as you all struggle through this very difficult and mysterious journey.

    And for you, Tamie ~ some umbrellas and smoothies (or margaritas, whatever you desire)





    Healing prayers on their way 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.

  8. #28
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    Tyler's been shrieking since 5:00 this morning. Gave him the Vicodin, then Valium and finally gave him Motrin at 9:30 along with his other meds. He should be out of it, but he isn't. Feeling pretty helpless right about now. What I wouldn't give for Tyler to tell us where it hurts.
    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."

  9. #29
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    Quote Originally Posted by Tamie View Post
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    Well, saw Tyler's Primary Care doctor today and not real happy with him. Just as I expected, he has no desire to pursue the cause of Tyler's pain. Refused to look at the video cause he say he still remembers the first one and he didn't want to see it again (heaven forbid I should upset his day), and all it shows is that Tyler is in a great deal of pain. Asked what more I wanted him to do cause the blood work and CT scan is normal. Uhhh, maybe his job? Told me I was becoming combative and did not listen to a word I was saying. To put it mildly, I was furious with him. He did order a chest Xray (more to appease me than anything) and gave us a prescription for liquid Vicodin. Wants us to contact the Neurologist and see what he says. Don't think he is going to be Tyler's doctor ever again. Tyler has been shrieking since 4:00 this morning, but of course, he was quiet during the office visit after getting Motrin and Diazapam. Started up again when we brought him home and the nursing supervisor for respite was here. She couldn't believe how much pain Tyler was in. I tried to post the video, but for some reason, it won't upload to this site.

    OK Rose, where is your umbrella and margaritas? Days like this make me wish I drank.
    Tamie, I'm so very sorry the doc was so dismissive! THAT IS AWFUL! I want to give him a piece of my mind! As to the videos, I think it is likely the video is too large to be uploaded so if you could make the size of the video smaller by compressing the file with a video editor you may have better luck.

    As for me no news to report just yet…will keep you posted.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Tamie, Tyler, & Jerry)))))) ~

    How has the rest of the day been? I hope that he was able to sleep and settle down. That's a lot of drugs in him at one time. But maybe they are not the right drugs to treat whatever is wrong with him.

    Does Tyler have a good, caring neuro? If so, then maybe that's the next move for you. What if the shrieking is something neurological? And not pain? Is your neuro good enough to discern that from a video? Might your neuro suggest an EEG, maybe continuous monitoring, a CT and MRI of Tyler's brain?

    The last resort, which I know and completely understand is a last resort, is to take Tyler to the ER, show the video, and beg for help. In ER, they call in specialists, order tests, and monitor Tyler's vitals, particularly during an episode. Perhaps some fresh eyes and minds will discover the missing link in the mystery.

    When you explain to the ER docs how long this has been going on, and when they see how utterly wiped out all of you are, I would hope that they would do everything they could to figure out what is going on with Tyler.

    You can list all of the Urgent Care and doctor visits, all of the tests. Tell them you are desperate, because you are. I'm sure that they will be able to recognize that when you walk through the door.

    I know the ER is a place to avoid, especially at this time of the year. But it may be the only place, where you might be able to get an answer, and relief.

    Many healing prayers on their way ~

    And for you ~ a soft place to fall, with the beverage of your choice ~





    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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