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.
My son may have epilepsy
Thu, 03/23/2017 - 18:00I have a family history of epilepsy. My sister had undiagnosed absence seizures her whole childhood and grand mal starting when she was 14. She was killed in a car accident at age 23 following a seizure.
My 5 year old son keeps having moments where he seems unreachable. I have to yell his name over and over again sometimes for a minute before he will respond. He also can seem uncontrolled in physical group activities. After switching peds I brought this problem up he wanted to check out possible absence seizures. I was floored. It had never entered my mind that this could be a possibility.
We were referred to a ped neurologist. In office test did not cause a seizure but he sent us for an eeg just to check. The test was abnormal during the falling asleep portion. I was a bit upset(teary eyed) because I thought the results would be a firm negative. I asked if he could still be completely normal and the doctor said he might be. But he sent us for an mri. Now that I am home and less upset it seems odd to send us for an mri unless he thinks there probably is something wrong. I'm wondering if he was just trying to delay telling me the news so I could have time to deal with it and not start bawling.
So my question is, is it normal to use an mri to diagnose seizures, or is it usually just used to identify the cause? I want to prepare myself and family if it is likely that my son will be diagnosed and we will need to live with this. Thank all in advance for your replies.
Comments
Thank you so much for your
Submitted by Chantel on Thu, 2017-03-23 - 22:18
Thank you so much for your reply. It was very helpful. If my son has epilepsy it is upsetting to me because it is what caused my sister's death but it is also that much more important as well for him to get treatment because of it. Denial isn't going to be a problem for me. I really don't want it to be ignored if it is the problem.
Well, it took me months to
Submitted by Amy Jo on Thu, 2017-03-23 - 22:50
Well, it took me months to wrap my head around it all, it also took ~6 months to get a diagnosis after we initially reported likely seizures - mainly because other weird symptoms were occurring that we followed up on... and in the end they turned out to be seizures. Those extra months gave me chance to come to terms with a lot. My husband didn't quite believe the initial diagnosis (mainly based on excluding other possible issues and on few discharges on 2nd EEG, but symptoms were increasingly worse) and kept harping on things but things were so, so!!!, much better on meds (that only treat seizures) that I finally said that if he truly thought that then we should get off the meds. But he wasn't willing to go that far because it was truly better on meds (night/day almost). Three years later they finally did see some seizures (completely new kinds for her so things had changed) and he could not wrap his head around these things being actual seizures (days of seizure data on inpatient EEG) so denial can come back to haunt one even at more definitive points.
Depending on the abnormal
Submitted by Amy Jo on Thu, 2017-03-23 - 20:44
Depending on the abnormal readings an MRI is common. E.g. if they saw interictal epileptiform discharges associated with focal seizures, an MRI is standard - but activity related to generalized seizures is not a reason to order an MRI. Absence seizures are usually very brief, 20 seconds or less, absence seizures are generalized seizures. Complex partials can look like absence but often last much longer, complex partials are focal seizures.People with epilepsy can have clear EEGs (takes 2-3 well chosen EEGs for ~90% of patients with epilepsy to see evidence of epilepsy on EEG, some people have focal points that are too deep and even intracranial EEGs can be hit or miss with someone with epilepsy). Most people with seizure related EEG abnormalities have epilepsy, only a very small percentage do not. So the odds are it is epilepsy (>95%) if there were epileptiform discharges on the EEG. I think the doc is used to seeing parents in denial - there's something about hearing epilepsy which really triggers disbelief.MRIs are often clear, it only sometimes shows a possible explanation for the epilepsy, MRIs don't diagnose epilepsy. Epilepsy diagnosis is an art form, but usually a good history is the most important component and that's just talking. If the MRI is clear but there were epilepsy related abnormalities then it would be odd if your doc says everything is fine.Lots of people have epilepsy. There are many forms and kids have good chances of growing out of a number of them.