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Teenage daughter with Benign Rolandic Epilepsy
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bhyatt43 posted:
My duaghter was diagnosed with Benign Rolandic Epilepsy about 5-6 years ago. We were always told "She'll grow out of it". As seizures persisted (about 1-2 per year) her neurologist order MRIs, EEGs, etc. Even a 4-day inpatient study to try and trigger a seizure while being monitored. Of course nothing has ever been found. Abou t6 month sago the decision was made to move her medication from Keppra to Oxcarbazepine. We started weening her off the Keppra about 90 days ago. Then yesterday at school she had probably the largest seizure she's ever had. In the ER, she was completely unresponsive for about 2 hours ... then started look around and "wake up" if you will.
We are beside ourselves because we aren't sure if there is anything else we could be doing oe should be asking. Her neurology team is at Primary Children's Hospital in SLC, so it's not like she's not receiving fantastic care.
Does anyone have any insight as to things we should be doing that we may not have thought about?
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dancer86442 responded:
Hello bhyatt,


I would like you to read an article. I am having Issues posting links, so, please visit Helpful Tips & visit Epilepsytalk.com. Use the Search Tool located in her Menu. Type in your Daughters' Epilepsy Type. It will appear in 40 Epilepsy Types. :)The article Phylis wrote can explain a Lot.


Your daughter experienced a Rare episode & as far as I know, there is no way to determine if it will happen again. My Gut & from what I have Learned over the past 20 yrs, says it, Possibly, will. This 'new' episode may have been triggered by the w/drawal from Keppra. I know it takes awhile, even after the final dose is done with, to get our meds Totally out of our system. You may want to do some 'homework' about De-Tox Drinks. Water or Juicies.


Are you keeping a Detailed Daily Journal? Please, read Journal Info in Tips, too. To insure you are including all necessary info. Another Link you may find useful is in our Resources. Look for: Questions for Doctors.


If you trust her DRS, then all you can do is Stay Strong! Continue to Educate yourself & your Daughter. If you don't mind, I would like you to continue to share Yours & your Daughters' Journey w/ our Community. It would be Useful Information for others' w/ the same Issues. If you have More questions/concerns, I will be here to Help.


Love Candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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hawiian_girl11 replied to dancer86442's response:
BRE usually out grows by 15-16 yrs old. it just stops.

I have read about it several times. I have a good friend who had a daughgter with BRE and it stopped at 16 and never hit again. nno meds were needed. benign means that it is tempry an will go away at osme point in time. the litures that I have read says that BRE is a type os partial sz that hits at night ime and turns into a T/C and because it doesn't last no meds are required unless your ddoc thinks it is necessary. because hey do grow out of it at 15-16 they stop and have no more problems and no more szs.like Candi said go to that other web sitr and read her stuff and then if you have a facae book account get into ht an dyou can find a bunch of support groups in ther that can give you aot of info.

my doc told me ther are OVER 40 different tyoes tyoes of szs some with out names.

I have TLE on my ldft side and wsss not a candidate for surgery because the lesions were too close to vital funtiond so I had the VNS implanted in septv20 of 07 then replaced on august 25 of 10. this one is hood ing up beter than the first one.

nancy


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