Page 2 of 2 FirstFirst 12
Results 11 to 15 of 15

Thread: CN Central: OCTOBER UPDATES!

  1. #11
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,198
    Blog Entries
    16

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    Simple and complex partial seizures can manifest in a variety of ways. It is best if you ask her what she wants you to do for her during and after a seizure, because there is no one right way to respond, other than to make sure that she is not in danger of falling or aspirating.

    Epilepsy.com has very helpful information about all seizure types. Here are the links to simple partial seizures and complex partial seizures:

    http://www.epilepsy.com/learn/types-...rtial-seizures

    http://www.epilepsy.com/learn/types-...rtial-seizures

    Michael's partial seizures were absence/staring, which later progressed to hour long tonic clonic (convulsing/grand mal) seizures.

    Jon's partial seizures are a mixture of staring, facial grimacing, fixed, dilated pupils, hand and shoulder twitching, drooling, as well as automatisms (pulling at his G tube or trache or his shirt or sheet).

    Regardless of the type of seizure, we always stay close, comfort and reassure ("it's okay, you'll be okay, we're here, we love you," etc.), and ensure safety.

    There isn't much you can do about post-ictal fatigue, except to make sure that she's in a comfortable place (a chair, a sofa) and that she's allowed to rest and recover for as long as she needs.

    It's important that you remain calm and keep your focus on her. Seizures can be frightening to observe, and we often feel helpless. But she's going to need you to be calm.

    You might ask her about the frequency and duration of her seizures, so that you have a benchmark to judge whether she's in trouble while seizing (lasting longer than usual or having different manifestations than she's described to you as typical). If possible, note the time of the seizure onset and when it subsides, so that you can inform her of its duration.

    Ask her whether she has auras, or senses the onset of a seizure, so that she can warn you. Ask her whether she has memory of her seizure, when it subsides. Ask her whether there are specific triggers to set off her seizures, so you can help to avoid them.

    The more you know about her particular situation, the better prepared you will be to help her with it. I would imagine that she would appreciate your questions, interest and willingness to help her.

    I think that it is wonderful that you are meeting people with various neurological conditions, expanding your awareness and understanding. All of them are informing your work, your breadth of knowledge about disabilities, which will be reflected in your storytelling and your films. There is a reason for everything, and I strongly believe that this is the reason you are meeting people with various disabling conditions.

    Love & Light,

    Rose
    Thanks so much Rose! I definitely plan to ask her what you suggested I ask, but just wanted your insight just in case. As far I know she is fully aware during a seizure and remembers the seizure which makes them very unpleasant for her, and gets exhausted after a seizure. I'm so sorry you had to watch Michael go through that and still have to watch it happen to Jon. I guess I need to learn to let things like seizures NOT scare me half to death in my line of work eh? Yeah people with brain conditions seem to be coming to me from everywhere now. It's super cool. You are exactly right!

    Read the Speechless thread. I posted a review.
    Last edited by funnylegs4; 10-26-2016 at 06:01 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  2. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,992
    Blog Entries
    1

    Default

    ((((((funnylegs4)))))) ~

    Seizures are scary. There's no two ways about that. Michael seized every day for 22 years, and I never got used to them. We've nearly lost Jon numerous times to tonic clonics lasting 3 or more hours. It took massive amounts of Ativan to pull him out of them.

    So, if your friend has a seizure, you will be scared, because that's a natural response. That's when you have to tell yourself to remain calm and remember what she needs from you to help her through the seizure. We can't necessarily stop a seizure, but we can be attentive and supportive, so we aren't totally helpless.

    It's wonderful that you are gathering information and asking for our experiences. That will be tremendously helpful to you, should you find yourself in this situation.

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  3. The following user says "thanks"


  4. #13
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,198
    Blog Entries
    16

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    Seizures are scary. There's no two ways about that. Michael seized every day for 22 years, and I never got used to them. We've nearly lost Jon numerous times to tonic clonics lasting 3 or more hours. It took massive amounts of Ativan to pull him out of them.

    So, if your friend has a seizure, you will be scared, because that's a natural response. That's when you have to tell yourself to remain calm and remember what she needs from you to help her through the seizure. We can't necessarily stop a seizure, but we can be attentive and supportive, so we aren't totally helpless.

    It's wonderful that you are gathering information and asking for our experiences. That will be tremendously helpful to you, should you find yourself in this situation.

    Love & Light,

    Rose
    Hi Rose. Thanks! Is it true some seizures are bad enough to stop a person's heart???
    I have heard stories like this where a person's heart stops, but wondered if they were true. When my teacher had those dizzy spells they really freaked me out but I was somehow able to keep myself calm because I didn't want him to panic either(I haven't the slightest idea how I managed not to scream honestly), so I can only hope this same instinct will kick in again should I witness a seizure. Glad you understand my need to ask for info! Praying Jon will not have any seizures any time soon!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  5. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    2,992
    Blog Entries
    1

    Default

    ((((((funnylegs4)))))) ~

    You may be referring to SUDEP, Sudden Unexpected Death in Epilepsy, which is associated with uncontrolled tonic clonic seizures.

    http://www.epilepsy.com/aimforzero/about-sudep

    Jon has always been intubated (put on a ventilator), when he's had his hours long tonic clonics. The last time, his entire body turned blue, while an incompetent Respiratory Therapist tried to change out his trache for one which would attach to the vent. That could have been the result of the Ativan and Versed he'd received to stop the seizure; both meds suppress the respiratory system.

    When you stop breathing, your heart stops beating.

    So, I surmise that SUDEP could be the result of lack of oxygen during a tonic clonic. The person might be in bed, thrashing, turns over and smothers in the pillow. Or chokes on excess saliva generated during the seizure. Or chokes on vomit.

    Thank you for your prayers that Jon doesn't have any more seizures, as right now we're contending still with chronic insomnia. It's nerve-wracking, since sleep deprivation is a major trigger for seizures with Jon.

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  6. The following user says "thanks"


  7. #15
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,198
    Blog Entries
    16

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    You may be referring to SUDEP, Sudden Unexpected Death in Epilepsy, which is associated with uncontrolled tonic clonic seizures.

    http://www.epilepsy.com/aimforzero/about-sudep

    Jon has always been intubated (put on a ventilator), when he's had his hours long tonic clonics. The last time, his entire body turned blue, while an incompetent Respiratory Therapist tried to change out his trache for one which would attach to the vent. That could have been the result of the Ativan and Versed he'd received to stop the seizure; both meds suppress the respiratory system.

    When you stop breathing, your heart stops beating.

    So, I surmise that SUDEP could be the result of lack of oxygen during a tonic clonic. The person might be in bed, thrashing, turns over and smothers in the pillow. Or chokes on excess saliva generated during the seizure. Or chokes on vomit.

    Thank you for your prayers that Jon doesn't have any more seizures, as right now we're contending still with chronic insomnia. It's nerve-wracking, since sleep deprivation is a major trigger for seizures with Jon.

    Love & Light,

    Rose
    Thanks Rose! Makes sense. I would think the constant intense movement during a tonic clonic would cause a person to hold their breath so they therefore don't breath correctly(just guessing) plus the reasons you mentioned. Now I see why the recovery position is so important when dealing with seizures! Hope the insomnia ends ASAP.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

Page 2 of 2 FirstFirst 12

Similar Threads

  1. CN Central: MAY UPDATES
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 9
    Last Post: 05-26-2016, 04:23 PM
  2. CN Central: MARCH UPDATES!
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 22
    Last Post: 03-29-2016, 09:07 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.