Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Update on Lydia
Fri, 01/19/2007 - 00:14Topic: New to Epilepsy.com
We had our MRI on Tuesday and another EEG and appointment with the neurologist today. The MRI showed no abnormalities, everything looked just fine and her EEG today was fairly normal. Two seizure discharges but no actual seizures. They upped her evening dose of Zonegran to 50 mg and scheduled a follow up eeg for the 30th.
What gets me is that no one has any answers for us. No real diagnosis, just a type of seizure. No answers as to why, no prognosis except for "if she's seizure free for 2 years we'll consider weaning her from medication." Where is that crystal ball when you need it? Honestly can anyone tell me if my baby will walk, say Hi mommy, go to kindegarten, much less prom, college, get married or have babies of her own?
Nope. Not this guy anyway. I can't nail him down on anything.
Anyone know ANYTHING about myoclonic seizures? Any specialists out there in this area of epilepsy? We'll go anywhere we need to to make sure she has the best care possible. She's not even 8 months old. She deserves to live her life, even with seizures, but with some answers not just questions.
Wow, I'm angrier than I thought about this whole thing.
Sorry about the vent there, its just really hard to watch her play in her exersaucer, hit her head on the toys from a seizure and then go right back to playing.
Jenn
Comments
Re: Update on Lydia
Submitted by jj.gitties on Fri, 2007-01-19 - 08:40
Hi Jenn. I am really sorry to hear about your daughter. I am a parent as well. I have a 2 year old. He does not have my seizures -- thank god.
You story is almost the same as my own. They did all the tests. They all came out normal. They could not find anything. They never gave me any real answers or anything. They just said -- "you have seizures". Thats it.
Perhaps look at the bright side. The MRI and EEG did not show anything. So you can be fairly certain that there is not physical damage/abnormality on the surface of the brain.
Re: Update on Lydia
Submitted by Anonymous on Fri, 2007-01-19 - 08:04
There are neurologists who specialize in treating children with seizures - called epileptologists. This site has a Find a Doctor feature that takes you to the database of American Epilepsy Society. By putting in location, you can find members, many of whom are epileptologists.
www.aesnet.org/Visitors/PatientsPractice/find_a_doctor/index.cfm
Also check out the National Association of Epilepsy Centers and look specifically for pediatric epilepsy groups.
www.naec-epilepsy.org
Hope this helps,
Epilepsy.com Resource Specialist
Hi there and feel free to vent! That's what a community is all about. A place to vent, share, get support. The lack of a crystal ball is tough but a common one many of us share. When seizures affect children so young, it often is very hard to tell what is going on in the future. Sometimes time is needed to see how a child will respond to treatment.
There are neurologists who specialize in treating children with seizures - called epileptologists. This site has a Find a Doctor feature that takes you to the database of American Epilepsy Society. By putting in location, you can find members, many of whom are epileptologists.
www.aesnet.org/Visitors/PatientsPractice/find_a_doctor/index.cfm
Also check out the National Association of Epilepsy Centers and look specifically for pediatric epilepsy groups.
www.naec-epilepsy.org
Hope this helps,
Epilepsy.com Resource Specialist