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New to the group and still a novice at seizures

Posted by on Oct. 29, 2009 at 2:20 AM
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Hi, i'm Tara and single mommy of a ball of energy JaidenDawn who is 2. She has been diagnoised with generalized seizures. She had another seizure last week and the doctor started her on a anti convulsant which is Depakote sprinkles and are hoping that they help her out. Were also working on getting her a seizure alert dog to help notify us when she's having them because she has particle/absent seizures and grand mal as well.

thanks for listening

Tara

WAHM to JaidenDawn 06/07
Our lives go on after seizures, just slower
by on Oct. 29, 2009 at 2:20 AM
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Replies (1-6):
LIZARD66
by Group Owner on Oct. 29, 2009 at 7:49 AM

Hey, Tara. :)

Welcome! I would give the Depakote at least a couple of months first before moving to getting a sz alert dog. If she's just started with szs, there's actually a good chance it'll help. I am 43 next week and have always had epi. After initial good GM control with phenobarbital, I began to have more obvious smaller episodes that weren't determined to be simple partials until I was 25 yo. In July, after a particularly nasty bout with a SP cluster and resulting lack of sleep, I talked with my doc about Keppra (again; it was the third time, I think), and I finally agreed to switch, after a harrowing 3-year experience over 20 years ago when I switched to Tegretol.

It's taken some adjustment time and a few experiments to calm my thyroid back down and get to sleep, but I can now say I have COMPLETE sz control on just one pill a day! :)

Good luck to you and your little one!

hugging

LIZARD :)

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

TaraBeth2007
by New Member on Oct. 29, 2009 at 1:00 PM

were working on the seizure alert dog becasue we miss some of her seizures ( i feel and the doc feels like we miss alot) so I don't know if the meds would be working or not.

WAHM to JaidenDawn 06/07
Our lives go on after seizures, just slower
LIZARD66
by Group Owner on Oct. 29, 2009 at 1:23 PM

Do you know what kind they are? I had simple partials for 25 years, and no one had any idea. They would leave me with post-ictal effects, but they didn't put me in any danger. I was aware--TOO aware--during them.

hugging

LIZARD :)

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

TaraBeth2007
by New Member on Oct. 29, 2009 at 1:39 PM

basic absent seizures i'm guessing. The doc's are still at a loss won't diagnosis her with Epliepsy since they can't figure out what kind they are or how they come on etc... so were diganoised with generalized seizures, i konw when i catch them they are for short periods of time but i'm not allways around and i don't allways catch them. So a service dog would let me know how many she was having so we could tell the doc's exactly how many she's having and how often..etc.

tbahn911
by Member on Nov. 5, 2009 at 11:50 AM

It's ok to miss some seizures.  You can't be with your child every second of the day.  My daughter is 9 months and has them in the middle of the night sometimes.  You just need to monitor the ones you do know about.  You will be able to notice if it is controlling the seizures by if they lessen.  It takes a while to know if the medicine is the right one too.  When they are seizing, they are ok.  There's not much you can do except give Diastat if it last longer than 5 minutes.  I just don't want you to spend a lot of money on a dog and have to take care of it.  Have a child with epilepsy is enough strain.  I couldn't imagine taking care of a dog too.  Sometimes my daughters seizures are hard to tell if she is even seizing because she might still click her tongue, but she is non reponsive.  I think you just need to give it some time.  My daughter was diagnosed 3 months ago and we are still working on the meds.

Olivia's Mom

TaraBeth2007
by New Member on Nov. 23, 2009 at 2:46 AM

The way the seizure dogs work is that you fund raise the money for the animal, and the animal  alerts you before or while they are having the seizures. I haven't made up my mind up but I think when she gets bigger it would be a good investment since she will be day care etc.. and not all of the teachers will be able to be taught what to look  for let alone have the time to do so.

WAHM to JaidenDawn 06/07
Our lives go on after seizures, just slower
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