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My son may have epilepsy

Thu, 03/23/2017 - 18:00
I 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

Depending on the abnormal

Submitted by Amy Jo on Thu, 2017-03-23 - 22:50
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. 

The 2 main tests used to

Submitted by just_joe on Fri, 2017-03-24 - 13:52
The 2 main tests used to diagnose epilepsy are the EEG and an MRI. The EEG shows the electrical output coming from the brain. Abnormalities are spikes or waves aka epileptiform or seizure activity. By seeing then the neurologists know where in the brain they came from. That means they know the origin or starting point of the seizures. What a seizure is "it's an electrical impulse hitting wrong in the brain which causes a chain reaction For me it was the left lobes of my brain. The MRI shows the brain as it is. That means anything on it can be seen. A cell formation that didn't grow right or grew too much. Or a cyst or in my case scar tissue which came from a concussion from a blow to my brain. For many or most people that can find no cause. Relax Amy Jo said other things which you need to understand. It takes time for anybody to get things set in their heads and understand the changes that can be made but your kid is just like the kid next door. Medications are out there that can control the seizures and working with the neurologists will help you control the seizures. Always ask questions and be sure you get answers you can understand. Even if it takes asking them to put it in plain simple terms. Hey I'm old school and mine needed to go over it a couple of times but after a few times I had it down

Thank you for sharing.

Submitted by Chantel on Mon, 2017-03-27 - 16:19
Thank you for sharing. Because of my experience with my sister's epilepsy I am not really going to be prone to denial. I am very focused on getting a treatment plan and controlling them. He has had a severe speech delay his entire life and attention problems that make it difficult for him to behave properly in group/classroom situations. That is the reason that we ended up investigating the possibility of absence seizures. My sister always had little pauses in speech where she would repeat a sound or stutter and look up. She was never tested. Then on New Year's Eve when she was 14 we were playing Chinese Checkers and she just started slowly looking up toward the ceiling. We all looked up to see what she was looking at and then she started having convulsions. It lasted for almost 10 minutes. She was confused when she finally came to and didn't understand why all these people were in our house. She pretty much had uncontrolled seizures everyday for months. The school district said she wasn't allowed back in school until her seizures were controlled. She ended up on a heavy dose of fenobarbitol(spelling?). She was always tired and gained a ton of weight. She wasn't able to accept it and thought we were lying to her. She started hiding her lapses. When she moved away from home she apparently stopped taking medication. She ended up having a seizure while driving, lost control and crashed. The crash killed her. So for me it is very important that my son be treated and observed if he does have epilepsy. It is equally important that we all accept and understand what it means if he is epileptic so that he takes it seriously and takes his medication to prevent the seizures.

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