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Panayiotopolous Syndrome/Benign Occipital Epilepsy
Thu, 04/13/2006 - 16:40Topic: Parents & Caregivers
My 5 year old was recently diagnosed with Panayiotopolous Syndrom/Benign Occipital Epilepsy. For anyone else with the same diagnosis, have your seizures ever appeared during the day? My daughter's have only surfaced during the night and my doctor has suggested they may not appear during the day.
Also what meds, if any? Thanks
Comments
Re: Panayiotopolous Syndrome/Benign Occipital Epilepsy
Submitted by KK123 on Sun, 2011-08-07 - 20:36
My daughter has boe and has a lot of headaches with no other symptoms. Usually they are first thing in the morning but she occasionally have them during the day and evening. It is not unusual for her to. Sometimes have five or six a week. Also have you put a baby monitor in her room? How is she now?
Re: Panayiotopolous Syndrome/Benign Occipital Epilepsy
Submitted by ekoorb on Mon, 2011-10-17 - 22:12
Hi. I hope your daugther is doing better. How did doc diagnose BOCE with just headaches? Just curious because my understanding is usually the diagnosis is a result of long lasting seizures during nighttime where a child vomits and stares off for a duration. Was it based on the EEG? The good news is the C in BOCE is for "childhood" and means the child has a good chance of outgrowing it- once through puberty. I never used a monitor. Our daughter would typically have coughing attacks during her sleep that we could hear and then she would vomit. Then she would stare off with her eyes to the left and she was limp. Very scary. She had a few of these seizures from age 4 to 6. If you have any questions, let me know.
Re: Panayiotopolous Syndrome/Benign Occipital Epilepsy
Submitted by ekoorb on Sun, 2008-09-28 - 21:56
Hi. I am sorry you are going through this stess. I would think Occipital E would be the same at BOCE but her seizures sound totally different then a BOCE diagnosis. Usually BOCE involves nausea and vomitting. As to status, what can happen with BOCE is these children can have unusually long seizures where they stare off and become non-responsive and other symptoms can follow. Obviously you need to ask the question about dieing to your doctor but I will tell you that we only witnessed 2 of our daugther's seizures and the others ones.. she slept through them. The reason I knew she had one is she would urinate in her bed and wake up wet the next morning. While she would be groggy the next morning, she seemed ok. I know how scary the thought is that your child is seizing while sleeping but our E specialist has said it does not harm her brain.
Who did your diagnosis? Why did they come up with OE? How long has it been going on?
Hi. I am sorry you are going through this stess. I would think Occipital E would be the same at BOCE but her seizures sound totally different then a BOCE diagnosis. Usually BOCE involves nausea and vomitting. As to status, what can happen with BOCE is these children can have unusually long seizures where they stare off and become non-responsive and other symptoms can follow. Obviously you need to ask the question about dieing to your doctor but I will tell you that we only witnessed 2 of our daugther's seizures and the others ones.. she slept through them. The reason I knew she had one is she would urinate in her bed and wake up wet the next morning. While she would be groggy the next morning, she seemed ok. I know how scary the thought is that your child is seizing while sleeping but our E specialist has said it does not harm her brain.
Who did your diagnosis? Why did they come up with OE? How long has it been going on?