Page 4 of 4 FirstFirst 1234
Results 31 to 34 of 34

Thread: CN Central: FEBRUARY UPDATES

  1. #31
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Tamie, Wow I'm just speechless about your PC Dr. I totally agree with all that Rose said... I know the ER is not always the best option but Rose made so many good point. We've been at that point and had good results from the ER with ongoing issues. Monitoring vitals and all the specialists they can gather in one room may be helpful. Prayers for your family and some relief.
    Mary Grace

  2. #32
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,217
    Blog Entries
    18

    Default

    UPDATE ON MY END: "L" is improving slowly. She is extremely tired, like my teacher was those first few weeks. They have not found the cause of her stroke yet. That is also one area where my teacher was lucky where they knew why he had the stroke and gave him meds to hopefully prevent another stroke. As for my teacher he showed me a video taken a year or so before the stroke and I could see the abnormally in his head and neck movements are indeed from the stroke and I'm not just being paranoid when I look at him. His brain is messed up. It's a relief to know what I saw was exactly something real rather than my own anxiety. I mean, I knew his spells and movements were real but I always wondered if I was exaggerating in my mind. I'm not nuts!!! I just wish he never had those issues in the first place.

    Mary Grace, You asked how old my teacher with the stroke is, I think he's 50 something from what he's said. I originally thought he was much younger.

    Tamie, I also agree with what Rose said. Let some people with fresh eyes and new perspectives see the situation and perhaps provide you with a better answer.
    Last edited by funnylegs4; 02-25-2016 at 08:11 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  3. #33
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    Tyler's episode yesterday lasted until 10:00 a.m. Gave him Motrin and he settled down until 1:30. Gave him Valium. Settled down until 6:30. Started up again. Gave him more Valium and took him until 8:00 to settle down. Had a fairly decent night, but started up again this morning at 8:00. More Motrin and Valium. Not impressed with the Vicodin. Took until 10:00 to calm him down again. I sent an email to the neuro on Tuesday. Have yet to hear from him. We are basically on our own. The last time we took Tyler to the ER in October, they gave him so many unnecessary drugs (until I made them stop), that he spent hours vomiting them up. Their knee jerk reaction is to give drugs first and try to figure out the cause later, if at all. It was a complete nightmare and the bill for the ER/overnight stay was $30,000. So thankful we have Kaiser. One less stress.
    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."

  4. The following user says "thanks"


  5. #34
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,047
    Blog Entries
    1

    Default

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

    I'm so very sad for your predicament. Our ER experiences are the opposite of yours. So, I was hopeful that Tyler would receive the same attention as our boys have at our hospital.

    Sending continuing healing 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.

Page 4 of 4 FirstFirst 1234

Similar Threads

  1. CN Central: JANUARY 2016 UPDATES!
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 23
    Last Post: 02-04-2016, 08:27 PM
  2. CN Central: DECEMBER UPDATES
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 26
    Last Post: 12-24-2015, 08:09 PM
  3. CN Central: NOVEMBER UPDATES
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 43
    Last Post: 12-01-2015, 03:39 PM
  4. CN Central: October Updates
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 56
    Last Post: 11-02-2015, 07:00 PM
  5. CN Central: September Updates
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 37
    Last Post: 10-04-2015, 02:29 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.