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.

3 Year Old Was Just Diagnosed. What Can We Expect?

Wed, 01/18/2017 - 21:27
Hi My 3yo son was just diagnosed with Complex Partial Seizures. We are waiting on an MRI and a 72 hour EEG. We have had a really hard time catching the seizures and usually only see them afterwards where he is either awake but unaware of what is going on around him or he is completely unconscious and unable to be woken up. This is all new to us. Any advice or what we can expect next or as he grows? Thanks

Comments

Hi Cheddar, sorry to hear

Submitted by kkirk16 on Wed, 2017-01-18 - 23:02
Hi Cheddar, sorry to hear that you've joined the club. My daughter was diagnosed at 3 yrs old, also with complex partial seizures. Let me first say, and you'll hear and see this a lot, that *everyone* has a different story about seizures. Your best source of information is your pediatrician and/or neurologist. And research on this site, definitely. I practically lived on this site for the first year or so after diagnosis. My daughter is now almost 18 and we thought during adolescence that she might have grown out of her seizures because she didn't have any for almost 3 years (however she was taking meds the whole time). As for what to expect, I can only tell you my experience with my daughter in the early days. There will be a lot of tests - MRI, EEG at the least. They may or may not show anything. My daughter has had probably 10 EEG's over the years and other than one she had in the hospital during a seizure, her EEG's have never "caught" a seizure or shown activity. They are elusive. Her MRI's (two) were also inconclusive, i.e. they didn't show any areas of the brain that were damaged or anything that would be conducive to seizures. For this reason, with my daughter, she wasn't actually diagnosed with seizure disorder until she was 5 years old. So that is one thing to be aware of and understand: just because tests don't show anything doesn't mean that there isn't something going on. Have they put your child on any anti-seizure meds yet?  Another thing to be aware of is the first med they try doesn't always do the trick. And sometimes more than one medication is needed. Don't want to overwhelm you. I've been exactly where you are and I know it's scary. Hang in there and remember to take notes and ask a lot of questions of the medical professionals.

Thank you so much for the

Submitted by Cheddar on Thu, 2017-01-19 - 23:42
Thank you so much for the insight. We are waiting on an MRI and 72hr EEG. He is started on a low dose of Keppra. His initial EEG was abnormal but did not catch a seizure. We have had a hard time catching the seizure itself so most of what we have seen is him suddenly unconscious and not being able to wake him up.I have been researching like crazy and I'm honestly overwhelmed by it all. There is so much to learn, so much to tell the preschool, and I still need to tell his big sister. I guess we will adapt though because what else can you do? 

Thank you so much for the

Submitted by Cheddar on Thu, 2017-01-19 - 23:43
Thank you so much for the insight. We are waiting on an MRI and 72hr EEG. He is started on a low dose of Keppra. His initial EEG was abnormal but did not catch a seizure. We have had a hard time catching the seizure itself so most of what we have seen is him suddenly unconscious and not being able to wake him up.I have been researching like crazy and I'm honestly overwhelmed by it all. There is so much to learn, so much to tell the preschool, and I still need to tell his big sister. I guess we will adapt though because what else can you do? 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.