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video EEG

Patty - posted on 03/15/2011 ( 6 moms have responded )

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Hi. My son is going to get a 3 day video EEG done in the hospital in April because one of the past ones have came back abnormal and another one normal. He has been diagnosed with generalized epilepsy. He continues to have seizures where he loses consciousness and he stops breathing and turns blue. His whole body will jerk and move. He also has twitches in his sleep. The doctor says she is unsure if these are seizures because they have never seen him have a :clinical seizure". THe report for the admission said they need to clarify what are seizures and what aren't. I am going crazy because I feel like the doctor doesnt really believe me as to what is happening with my son. She keeps increasing his medicine but the convulsive seizures keep coming. I keep pushing for tests to figure out exactly what is happening with him but am unsure if this is the right approach anymore. I am frustrated with the doctors. I know my son is seizing...why cant they do anything for him? My question is does anyone know what is going ot happen with this video EEG and if it comes up that he doesnt end up having a seizure while in the hospital what is the next approach with the doctors? Has anyone been in my shoes? I am sorry for the length of this post, I am just very frustrated and upset. Any advice is appreciated.

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May - posted on 01/17/2014

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my son is scheduled to have a 5 day video eeg..he was diagnosed of epilepsy at 5 mos..he is on valproic acid..the dr doesnt seem to believe me and my husband when we told them that our son had so many different types of seizures already..from half body twitching, kicking, jerking..staring spell..whole body shaking..turning blue..i am very frustrated as well..have u ever experienced something like this? inconsistent type of seizures??? godbless us all..

Amy - posted on 03/20/2011

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My son had 24hr EEG and video. We actual did it at our house and my son did a great job considering he had a machine attached to him. His EEG came back fine but the video showed many seizures. So confused? Why did it not show up on the EEG. He has been put on Keppra which has helped but not completely stopped them. Now the dr wants to put him on Lamictal which has serious side effects. I feel like we really do not have any answers. The dr has diagnosed him with complex partial seizures from just watching the video. The seizures happen everyday, starring and jerking for a few seconds and thats all.



Confused on what to do?

Patty - posted on 03/16/2011

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Beth - thank you. We are having the procedure done at Kosair Childrens Hospital...we too are in Kentucky. His "jerks" are nightly and he has at least 20 or more of them between the hours of 10 pm and 12pm and then more between 3 am and 5 am. It is crazy because he doesnt sleep real well. The tonic clonic ones are happening a couple times a week sometimes more. The problem is with the tonic clonic ones there isnt a real pattern...some weeks he will have one a day and then other weeks he wont have any at all. It is scary!

Cindy - thank you so much for your advice and support, I appreciate it. It had a lot of information in it. I am glad you were able to get everything straightened out for your child.

Have a great night everyone!

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My son has had many video EEGs. Here is some advice. Some hospitals have the parent involved with the EEG process by clicking a device when they see a type of seizure. I encourage you to do this if available. It is typical that they schedule you for 3 days, but if you are not getting results in 3 days ask for the time to be extended. Now the days are going to long and your child is going to want to get out of there. They are restrictive in movement and there is only so much you can do in a hospital bed. Also, if you are aware of triggers that precede the seizures, inform the team and see if you can recreate those triggers. There are also different ways to read the results of an EEG. I believe it is a way of taking out the residual movements and focus on the epileptic patterns.

Don't give up. It took us four years to get a confident diagnosis. We went to five hospitals. Big hospitals. Cleveland Clinic and Mayo. We had my son's case presented at a conference for input from the neurologists attending. We also did a lot of videoing of the events at home which were reviewed by the doctors. Have a camera available all the time and capture the events. Also log the events including the time of day, what was going on before the event, and then a description of the event - event video. All of this will help get to a diagnosis.

Listen to your gut feeling. No one knows your child as well as you do. If you have more questions, let me know. I am not a doctor but we have been through a lot.

Beth - posted on 03/16/2011

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She believes you or she would not have put him on anticonvulsants. The purpose of the EEG is to find out where these seizures are coming from so that they can more effectively treat him. If one EEG came back abnormal, they know that there is epileptiform activity, they just need to see a seizure so that they can do the best they can to treat him. It's hard not to take it personally, but try not to, I know it is an emotional time. But they will see on the video EEG. How frequent are his generalized seizures? And it sounds like he is having myoclonic seizures "jerks" during sleep, those will show up on the EEG as well. Even if they do not see a seizure on EEG, they may adjust medication again, but just have faith that he will seize and they will see what they need to in order to treat him more effectively. Other tests they may want to run are a MRI and PET scan, depending upon what they find. What facility are you having his test ran at? Best wishes, I know your frustration. Beth Baker - Kentucky

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While my son has not had a video eeg, I do have a friend whose daughter had one just recently. He daughter was admitted for 3 days, just as your son will. She was hooked up to an eeg and continuously monitored the entire time she was there. Her mom was able to stay with her the entire time and it was made as "normal" as possible. That is, she was in a private room with tv, video games, puzzles, books, etc. Unfortunately, she did not have a seizure while there, but I do believe some information was gained as the doc's were able to view a "pattern" to her brain waves. I not sure if this helps you at all, but hopefully, it will at least give you some assurance that your child will not be hurt by the test. Most likely, only bored. Good luck!

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