It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Epilepsy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-21-2011, 11:32 PM   #1
Newbie
(female)
 
mama2G's Avatar
 
Join Date: May 2011
Location: Las Vegas, NV
Posts: 1
mama2G HB User
Hello, new here...

Hello, I'm new here and thought I'd post instead of just lurking.
My limited experience with seizures before my daughter was bound to a roommate in college who did not take care of himself very well and a middle school student who collasped on my floor in the middle of class. I guess those were both "gran mal" type seizures...easily identifiable...?
My daughter is almost 9 months old now. She started having seizures on day one, and thats a long story I won't go into now. She was put on phenobarb but was too sleepy to eat. Then put on keppra...
When my sweet Baby G came home with me after 2 weeks in the NICU it seemed like she never stopped crying. Some nights it was 4-6 hours, straight. (Believe me, I tried everything.) Everyone kept telling me to wait for the magic "3 months old" marker and the "colic"/constant crying would go away...I had an inkling it wouldn't. I read about keppra...
We talked to her neuro about weaning her off the keppra, but he wanted to wait til she was 6 months. So we did.
At 6 months I was so excited to meet my daughter, what would she really be like without keppra in her!? Of course I only realized after that it would take 3 months just to get her off it.
But we never made it there (off keppra)because at half way through the wean she started making funny jerking movements. On a Saturday afternoon (read: neuro not in) after google/you tube searching the jerking movements my husband and I were pretty sure we were dealing with Infantile Spasms. The ER sent us home with a pat on the head (telling us it was myclonus, sleep jerks) and instructions to up the keppra again just in case.
Long story less long: the last EEG showed hypsarrhythmia. She has IS. We're on keppra, topamax and cytra-2. I do feel she is less aggitaged, but at what cost? She seems more sleepy but not sleeping more than before. We have another EEG this Thursday.
What does this mean for my beautiful baby girl? I've been reading some pretty crappy stuff about IS.
We are extremely overwhelmed and feeling very alone. I got on here hoping to get someone who understands and help me understand what my sweet girl is going through...and will go through.
Thanks for reading and any help.
__________________
Mama 2 Baby G

 
Sponsors Lightbulb
   
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
hello Im 17 and epileptic deeleeinep Epilepsy 10 03-14-2007 02:53 AM
Hello, I'm new to these boards. At Wits End Epilepsy 3 10-08-2005 07:18 AM
Hello...just wanted to quietly share tkdmom96 Epilepsy 11 04-05-2005 09:23 AM
Hello, My Introduction and Story Daimajin Epilepsy 5 06-30-2004 06:04 PM
Hello, we made it back.....~: ) gagcas Epilepsy 9 05-10-2004 05:10 PM

Tags
infantile spasms, keppra



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



030free (19), 92261 (11), Positive Cynic (9), Travis from MN (7), Nicole K (6), heyloe (5), cardshark (4), neurowreck (3), webartethan (2), Looking4aAnswer (2)

Site Wide Totals

teteri66 (1182), MSJayhawk (1015), Apollo123 (913), Titchou (862), janewhite1 (823), Gabriel (763), ladybud (760), midwest1 (671), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 04:09 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!