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Thread: CN Central: JANUARY 2016 UPDATES!

  1. #11
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    Thank you Rose! The MRI went well.Her appointment was at 11:15 but she didn't go in until about 12 so it was a very long morning. Nothing to eat or drink. She's such a trooper when I tell her we can't eat till after she never even asks for anything, she's so good about it. She was a little slow waking up. I probably got her up and headed home a little too soon and should have let her rest. She cried when we got home for a long time.She doesn't know enough to just lay down and rest, the stimulation was too much too soon. I know from experience that you just want quiet and dark for a while. I felt really bad for her...She fell asleep about 6:30 and slept till 6:30 am. Back to her old self when she woke up. We have an appointment with the neurologist Feb. 9th so we'll go over the MRI/MRA.
    Mary Grace

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    January isn't starting out well for Tyler. Been in Urgent Care twice and multiple doctors visits trying to figure out why he is in so much pain. Oddly enough, during the day he seems fairly OK, but once 5:00 hits in the evening, he starts shrieking, seizing, moaning, cold sweats and this goes on until 9:00 or so after doses of Valium and Motrin. Last night it started up again at 11:00 and finally stopped at 1:00 this morning after a dose of Valium and more Motrin. First doctor thought sore throat from a virus. Next doctor thought ear infection from the loads of wax in his ear. Chest xray done to rule out pneumonia and given Tylenol with Codeine for the pain (useless drug). Granulation, which is bleeding and oozing forming inside the mic stoma, but we are treating that with prescription cream. The rest have no clue where to start. We are heading over to the clinic to have his ears flushed after 10 days on antibiotic ears drops and mineral oil in his ears multiple times daily. Still shrieking. No vomiting, no runny nose, no temp, coughing only after being so upset he coughs until he coughs, so far, no UTI. Pooping on schedule, urinating with no problem. No change in diet or fluid intake ????? Very frustrating. The timing is what is so very weird. Don't want to put him through any unnecessary tests. Any thoughts?
    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. #13
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie & Tyler)))))) ~

    Among the options posited by the doctors, I'd go with an ear infection caused by wax build up.

    When these symptoms begin, is Tyler upright or laying down? Perhaps it's the change in positioning that is causing the discomfort?

    Wracking my brain for other potential causes ...

    Dental issue ~ cavity or abscess?

    Gas or intestinal discomfort, eg. cramps?

    Neurological cause, such as a new kind of seizure activity?

    Hallucinations?

    Kidney stone movement?

    Think about everything that goes on with Tyler from 3 to 5 p.m. Are there any clues there?

    Have you considered trying to pre-empt the episodes by giving him Valium and Motrin, before they occur, say around 4:00 or 4:30? I realize that you don't want to give him these meds, unless he needs them, but it might be worth the experiment tomorrow to give them to him prior to 5 p.m. to see if it works to stop the episode from occurring. Whether it works or doesn't, you'll at least have that information.

    While I wish that Tyler was not going through all of this, the news that he doesn't have a UTI is wonderful, as well as the other results you have so far in your journey to determine the cause of his symptoms. And that's why it's so confounding, isn't it? He's doing well in so many regards, so what is this now? I understand.

    I will continue pondering, and I'll post if I have any other ideas as to the source of Tyler's distress.

    Meanwhile, as always, healing prayers are on their way to all of you~

    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.

  4. #14
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    Thanks Rose. Tyler's been shrieking off and on since 5:00 this morning. Gave him yet more Valium and Motrin and he settled down, only to start back up around 8. Gave him 5 more mg. of Valium. Started back up again at 9:00. I'm hiding out in the office to try and not hear him. So hard to see him suffer and have absolutely no way to help him. Ears were flushed out yesterday and lots of wax removed. No redness, no infection. Throat look as good as it ever does. Husband thinks maybe a kidney stone fragment has broken lose, but this has been going on since the second week in January. No rhyme or reason to it. I suspect it is a gelastic seizure that is hitting the pain center in the brain. He laughs and shrieks at the same time until he just becomes so distraught that he coughs and chokes. Awful to watch. The doctors just stand back and stare at him. They really don't know where to start without giving him several unnecessary tests or putting him in the hospital, which we do not want to happen. UGH!
    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. #15
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    ((((((Tamie)))))

    Your theories of gelastic seizures and kidney stone migration seem to be plausible explanations. Perhaps a call to his kidney doc to see whether there is any way to rule in/out kidney stone movement? Jim had kidney stones and said that it can be intermittent pain, as opposed to constant. Maybe his neuro might be able to weigh in on the possibility of gelastic seizures?

    I understand so well your frustration and despair. We went through this with Michael for 8 months of continuous shrieking, and nothing helped him. It stopped as suddenly as it began. We never figured out the cause.

    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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    ((((((Mary Grace)))))) ~

    I lost our internet connection last night, before I could respond to your post. Dang cable company!

    I'm glad that Kathleen recovered after sleeping for 12 hours. Hope she's feeling even better now.

    Be sure to let us know the results of the MRI/MRA after your Feb. 9th visit.

    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.

  7. #17
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    UPDATE ON ME: I wrote a new film blog post today which can be seen at this link
    http://cripvideoproductions.tumblr.c...ad-anniversary
    Or on the Braintalk blog feature here.
    http://www.braintalkcommunities.org/...e-they-will-go

    Rose, You’re very welcome! Thanks! Your spike explanation does make sense. I have a fascination with all things medical LOL. Just today I saw a medical documentary that by sheer chance mentioned neurologic symptoms like the types of symptoms I saw in my teacher and said it might have been the brain firing too many signals at once because of the stroke damage. It still kinda freaks me out but at least that explains some of the weird symptoms. Wow! Never realized Jon was such a tall guy. He sounds quite handsome!

    Mary Grace, Glad the MRI was sorted out and that Kathleen feels better. Sedatives made me feel awful when I had them so I don’t blame her for crying. I hope the MRI has good news about her delicate blood vessels etc.

    Tamie, I’m so sorry to hear that. It sounds neurologic to me from your description but I really do not know. Praying for his suffering to stop!
    Last edited by funnylegs4; 01-30-2016 at 05:27 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  8. #18
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    Took Tyler into Primary Care doctor today. Absolutely miserable weekend. Needed to give him Tylenol/Codeine and alternate with Motrin every 3 hours. Woke up at 1:30 this morning with him shrieking. The wind and rain didn't help any. Finally got him back to sleep at 4:00. Doctor always looks scared to death when we bring Tyler in. Decided to do a ton of blood work and ordered a CT scan of his kidneys. Hoping one kidney isn't blocked from a stone fragment. If that doesn't pan out, they will do an ultrasound of his gallbladder to look for stones there. I took a seven minute video on my phone and showed the doctor what we have been witnessing since Jan. 14th. Clear to see that Tyler is in great distress. It helped. Hopefully we will get to the bottom of it. Tyler is shrieking again. Poor kid needs a huge break!
    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. #19
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I haven't had a chance to read your blog post, but I will. Remember when I said that you will learn more from your teacher's stroke than you will in his classroom? Turns out to be true! That's great that you are discovering so many interesting things about how the brain works. And, yes, I am biased, but Jon really is quite handsome. He had girls falling all over him, when he was in school. He's a Babe Magnet!

    Tamie ~

    I'm glad that Tyler's doc ordered tests, and I pray that the results will get to the bottom of what is causing Tyler so much distress. I'm so very sorry for Tyler and for you. Please let us know what you find out.

    Healing prayers 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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  11. #20
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I haven't had a chance to read your blog post, but I will. Remember when I said that you will learn more from your teacher's stroke than you will in his classroom? Turns out to be true! That's great that you are discovering so many interesting things about how the brain works. And, yes, I am biased, but Jon really is quite handsome. He had girls falling all over him, when he was in school. He's a Babe Magnet!

    Tamie ~

    I'm glad that Tyler's doc ordered tests, and I pray that the results will get to the bottom of what is causing Tyler so much distress. I'm so very sorry for Tyler and for you. Please let us know what you find out.

    Healing prayers on their way ~

    Love & Light,

    Rose
    Thanks Rose! Please read the post when you can and let me know what you think?! He sure does sound like a babe magnet :) Of course I remember. Indeed. My teacher has no idea how much he helped me!

    Little update: One of my friends in another state has a blind friend/co worker who I will call "L" who has been suffering almost constant fainting spells. Apparently she even fainted in the middle of a lunch meeting. She has to wait until March to see a neurologist about it. This woman has been blind for many many years. I have read fainting spells could be caused by balance issues,stroke,low blood sugar and a host of other problems. It hard for my friends to have to watch her deal with the spells, just as I hated watching my teacher get dizzy etc. Any ideas on how my friends and I could help her? Could her visual impairment be making the problem even worse somehow? The woman works high stress jobs, could that have something to do with it? This woman is a big fan of my films too from what I hear. I am so honored!
    Last edited by funnylegs4; 02-01-2016 at 08:57 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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