Forums
New posts
Search forums
What's new
New posts
New profile posts
Latest activity
Internet Search
Members
Current visitors
New profile posts
Search profile posts
Log in
Register
What's new
Search
Search
Search titles only
By:
New posts
Search forums
Menu
Log in
Register
Install the app
Install
Forums
General Discussions
The Watercooler
Name for Type of Seizure
JavaScript is disabled. For a better experience, please enable JavaScript in your browser before proceeding.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an
alternative browser
.
Reply to thread
Message
<blockquote data-quote="susiestar" data-source="post: 463333" data-attributes="member: 1233"><p>Sorry to leave you all hanging with-o any info/answers/update. It has been quite a day. </p><p></p><p>Steely, the potassium/electrolyte thing is the first thing each doctor checks. none of them believe the lab tests from the other docs, even if they work in the same bldg and use the same lab and it was done a month ago. Annoying, but bloodwork isn't a big deal to any of my kids - anything that involved a needle means ice cream, so they are just fiiiiiine with that, lol. We have played with various supplements and vitamins with two of the pediatrician neuros, but they didn't do anything.</p><p></p><p>Lisa, there is NOTHING stupid about you. That reasoning did not make sense to any of the nurses. The main neuro we saw looked me in the eye and said that even if she was on medications they would see the seizure activity, it just wouldn't cause any other part of her body to react to the seizure. His nurse looked at him like he just swore that Tinkerbell and Peter Pan were standing on Jessie's head. I have no respect for the man - and he clearly has no respect for a parent's ability to read and use common sense. Several times I found nurses whispering about how what he told us didn't make any sense, but I am sure he would not have listened to them.</p><p></p><p>The nurse at the neuro says this is clear seizure activity - classic is what she called it though she didn't say a type. The appointment won't be moved up unless the primary care doctor calls and asks them to. We are seeing the primary care doctor on Tues, being worked in and I am betting they will call the neuro.</p><p></p><p>Today was terrifying for Jess. I spent the day curled up next to her, cuddling her. First she did the eyerolling, head to toe pain/spasm thing. Ten mins later felt a bit better but then suddenly got SUPER hot all over. I made her get into a comfy position because that is our cue that the freezing, unable to move type of seizure is going to happen. She was able to keep her hands moving, and her eyes and after about thirty minutes could talk and swallow. Too two HOURS more until she could move her legs even a little bit. Twenty minutes later that hot feeling hit her again, again I had her get comfy where I could stay near her, and this time her hands and arms and head were more mobile, but her legs felt nothing and could not move. When she couldn't see me I stuck a needle into her foot to see if she could feel anything. NO reaction at all, and that was 90 min after that freezing thing happened.</p><p></p><p>This is the koi the pcp tried to tell us "might not be normal for others but just might be normal for you". When we saw him last tme he blushed when I brought it up. Also said he had seen her records (by the latest visit) and that he was wrong when he said it might be normal for her - or anyone. He hadn't realized all we had already done/dealt with/tried/found out.</p><p></p><p>Thanks for the info about some people never having eegs that show seizures. I will remember that and use it to help push for help for my daughter. I hate this stuff and so much just don't want her to hurt or to deal with this koi.</p></blockquote><p></p>
[QUOTE="susiestar, post: 463333, member: 1233"] Sorry to leave you all hanging with-o any info/answers/update. It has been quite a day. Steely, the potassium/electrolyte thing is the first thing each doctor checks. none of them believe the lab tests from the other docs, even if they work in the same bldg and use the same lab and it was done a month ago. Annoying, but bloodwork isn't a big deal to any of my kids - anything that involved a needle means ice cream, so they are just fiiiiiine with that, lol. We have played with various supplements and vitamins with two of the pediatrician neuros, but they didn't do anything. Lisa, there is NOTHING stupid about you. That reasoning did not make sense to any of the nurses. The main neuro we saw looked me in the eye and said that even if she was on medications they would see the seizure activity, it just wouldn't cause any other part of her body to react to the seizure. His nurse looked at him like he just swore that Tinkerbell and Peter Pan were standing on Jessie's head. I have no respect for the man - and he clearly has no respect for a parent's ability to read and use common sense. Several times I found nurses whispering about how what he told us didn't make any sense, but I am sure he would not have listened to them. The nurse at the neuro says this is clear seizure activity - classic is what she called it though she didn't say a type. The appointment won't be moved up unless the primary care doctor calls and asks them to. We are seeing the primary care doctor on Tues, being worked in and I am betting they will call the neuro. Today was terrifying for Jess. I spent the day curled up next to her, cuddling her. First she did the eyerolling, head to toe pain/spasm thing. Ten mins later felt a bit better but then suddenly got SUPER hot all over. I made her get into a comfy position because that is our cue that the freezing, unable to move type of seizure is going to happen. She was able to keep her hands moving, and her eyes and after about thirty minutes could talk and swallow. Too two HOURS more until she could move her legs even a little bit. Twenty minutes later that hot feeling hit her again, again I had her get comfy where I could stay near her, and this time her hands and arms and head were more mobile, but her legs felt nothing and could not move. When she couldn't see me I stuck a needle into her foot to see if she could feel anything. NO reaction at all, and that was 90 min after that freezing thing happened. This is the koi the pcp tried to tell us "might not be normal for others but just might be normal for you". When we saw him last tme he blushed when I brought it up. Also said he had seen her records (by the latest visit) and that he was wrong when he said it might be normal for her - or anyone. He hadn't realized all we had already done/dealt with/tried/found out. Thanks for the info about some people never having eegs that show seizures. I will remember that and use it to help push for help for my daughter. I hate this stuff and so much just don't want her to hurt or to deal with this koi. [/QUOTE]
Insert quotes…
Verification
Post reply
Forums
General Discussions
The Watercooler
Name for Type of Seizure
Top