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Rolandic Epilepsy
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shamrockgal posted:
My 8yr. old daughter has been recently diagnosed with rolandic epilepsy. My husband and I have not put her on medication,as her spells (seizures) have only occurred few and far between. My question is what type of learning disabilities and behavioral problems can this type of epilepsy come with?
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dancer86442 responded:
Hello shamrockgal,


Although some children may experience speech or reading issues, there is usually no learning issues or behavioral problems. You can learn More about this type of seizure on the epilepsyfoundation.org site. You do not have to join to read the info. Use tab: Living With Epilepsy. I checked Google Search & there were contradictory reports.


Suggestions: Have her tested w/ a portable EEG. As these seizures can be nocturnal. The portable tests are 24-72 hrs long & can be done in the comfort of your home. Please, read our Info in Tips about Daily Journals. Start one today! It will be very useful for you & DRS & a Great tool for your daughter as she matures.


Keep Learning & keep asking questions. There are books on Amazon.com that can help, too. The books are for all ages. I firmly believe children need to Know/understand what is happening to them, too. You can note Authors/titles & visit your Local Library. Talk to the Research Librarian. That is their Job! If the books are not in your Library, then other Libraries can Lend them the books.


You have decided Not to medicate your child. But, keep in mind, some seizures if left untreated, can lead to other types of seizures &/or other health issues. ie: Depression. My suggestion: check out other Epilepsy Control Alternatives. Diets, neurofeedback, chiropractic, yoga, meditation & much more.


Also, keep in mind, Support is very Essential! For your family & your daughter. Your State may have a support program near you. The EFA.org site can help you locate one. Plus, there are numerous other sites for children, if need be. Hugs! Remember, I am here for you.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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shamrockgal replied to dancer86442's response:
Thank you for your input. I greatly appreciate it! I will definitely check out the epilepsy website.

Our daughter has had sleep deprive EEG and an MRI. The doctor suggested Keppra for medication, but my husband and I are leery about the side effects. We do understand that all medications have side effects, but I guess with her personality and the combination of the side effects it what makes us leery.


Every time that we know about a seizure which she has had, she comes out from her bedroom with either tingling in her right hand into her arm or her right hand in already cramping (tonic-clonic).


If she has rolandic activity, does that happen all the time during the night, periodically? Her EEG showed that she had that activity during the first part of sleep. She never was in a deep enough sleep during the process.
 
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dancer86442 replied to shamrockgal's response:
Hello, I am sure you have read the Info by now. Yes, they can be nocturnal. But, can happen during the day, too.


Not to confuse you, but, what you described is not a tonic-clonic. T/C's involve the whole body. what she May be experiencing is a Simple complex or partial complex seizure. Our Epilepsy center (highlighted in Blue below these messages, has a full description of the various types of seizures. As does the EFA site.


In our Resources we have News/info about the newest seizure detection devices. An Emfit mat is suggested for nocturnal seizures. There is an organization that can help you get a discount &/or help you raise funds for them. Yes, they are quite expensive. Google Search for the National Seizure Disorders Foundation & please contact them for more Info. B4 the Mats existed, we always suggested a baby monitor w/ sound/video to detect seizures.at night. There is, also, a belt, but, it would have to be ordered from the UK, I think. Another new development is the Smart Watch. It too, can detect seizures. So, you have options there.


As for meds: I can understand your hesitancy. But, Kepra is not the only med out there. Ask what other Med options she has. I know a lot of ppl who have had success w/ Keppra. Mood swings were controlled by B6 supplements. Unfortunately, All our meds are 'trial & error'. You won't know what will work Unless you try it. It takes 2-6 weeks for our systems to adjust. And you have the rite to say No to any med that Does interfere w/ her quality of Life. But, again, you Have to try them, to Know what will work! It is the same w/ the alternatives, except alternatives have fewer side effects. They will require approval & proper supervision from a DR though. IF a DR disagrees w/ what you want to try, then seek another Opinion! epilepsytalk.com has a list of DRs approved by others' w/ epilepsy. Phylis has lots of other articles you may want to read. You can find her site in Tips or Resources. Again, no need to join to read the articles.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 replied to dancer86442's response:
Hi Candi and Shamrock,

Some docs don't/will not put kids with BRE on meds because it is almost ALWAYS out grown byt their early to mid teens and reeks no havoc and never returns.

It is BENIGN, so it will not go further than a certain time.

BTW candi,

I am into a walking cast now and am walking with it some, so there is hope yet,

Nancy


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