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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 wiff96 on Sat, 2008-12-20 - 03:39
Our daughter is now 6 months (status seizure) free she still has small episodes where she needs to have a little lie down, she will go pale and say her heart is broken and her stomach feels funny we are assuming these are aura seizures and are only happening just before she gets a cold or gets sick. Keppra has been our lifesaver we hope she continues this way but you never know, i wish she didnt have to have the little seizures but we do not want to increase her dose to high so its a balancing act.
Re: Panayiotopolous Syndrome/Benign Occipital Epilepsy
Submitted by moeb6374 on Sat, 2008-09-27 - 09:37
moeb6374 hi my 7 yr old daughter was diagnosed with occipital epilepsy. in june 08. is this the same as benign occipital epilepsy. she knows when they start. usually she will yell mom or dad and say she sees bright colored spots and usually i have time before they come. they seem to start their cycle from her sleep then they come all that day, not all of them being partial. she is on trileptal and keppra bid. she also gets headaches with nothing else. why are they status? what if we weren't there to hear her or see them would she die, or would they eventually stop. either my husband or i sleep with er every night because of the risk. any info. would be great at all. thanks moe
Re: Panayiotopolous Syndrome/Benign Occipital Epilepsy
Submitted by ekoorb on Wed, 2008-09-17 - 22:48
Hi. I have not visited this web page recently. I would have responded earlier to your post. I know you must be pretty stressed out, especially with the diagnosis being pretty new. Our daugther is going to be 8 and was diagnosed when she was 5. I can only imagine what you felt the first time the seizure turned into status seizure. Our first seizure lasted about 7 and a half minutes and I had no idea what was going on at that time. We ended up in an ambulance that night.
Being overtired always played a big part in bringing on our daugther's seizures. Sleep deprivation seemed to be the main trigger. Although her seizures were occurring at night (one about every 3 to 4 months) we still put her on a homeopathic dose of Topomax because there is never a guarantee that it would not occur during the day. I call it homeopathic because we never doubled the dose and the amount she takes is not equivalent to her body weight. It definitely took some time to adjust to the Topomax but after a few months, she really was fine with it.
How did the doc come up with BOCE? Are you seeing an E specialist? The good news, as I am sure you have read, is your daugther could outgrow this.
Just know how important it is to deal with your emotions with all this. When this all started for us, I became super mom, determined to get the best docs, best meds, all the info. etc. But once I got that all in place, I had almost like a post-traumatic stress reaction to all this. I really had to deal with my own fears.
I hope your daugther is doing well.
Hi. I have not visited this web page recently. I would have responded earlier to your post. I know you must be pretty stressed out, especially with the diagnosis being pretty new. Our daugther is going to be 8 and was diagnosed when she was 5. I can only imagine what you felt the first time the seizure turned into status seizure. Our first seizure lasted about 7 and a half minutes and I had no idea what was going on at that time. We ended up in an ambulance that night.
Being overtired always played a big part in bringing on our daugther's seizures. Sleep deprivation seemed to be the main trigger. Although her seizures were occurring at night (one about every 3 to 4 months) we still put her on a homeopathic dose of Topomax because there is never a guarantee that it would not occur during the day. I call it homeopathic because we never doubled the dose and the amount she takes is not equivalent to her body weight. It definitely took some time to adjust to the Topomax but after a few months, she really was fine with it.
How did the doc come up with BOCE? Are you seeing an E specialist? The good news, as I am sure you have read, is your daugther could outgrow this.
Just know how important it is to deal with your emotions with all this. When this all started for us, I became super mom, determined to get the best docs, best meds, all the info. etc. But once I got that all in place, I had almost like a post-traumatic stress reaction to all this. I really had to deal with my own fears.
I hope your daugther is doing well.