Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Anyone stop medication because of academic issues/cognitive issues ?

Mon, 09/19/2011 - 21:45

Topic: Living With Epilepsy - Youth

Hello All...I have 9 year old triplets, 2 of them have been diagnosed with benign rolandic epilepsy. They both take 300mg of Trileptal 2x's a day. We have noticed a sharp decline in their cognitive abilities...they were once very bright and gifted students...today they struggle with subtraction...one of them seems to be living in a literal fog. Both are at risk for not passing this school year and being help back ( would have been last year, but we were at a private school ). They were doing very well until the seizures and medication started. We had some preliminary testing done this past Summer, and are looking at the possibilites of some severe processing disorders that is severely hampering academic progress. We go tomorrow for a check up with their neurologist, and we are going to ask about going completely med free. I fear what will happen, will they have more seizures ?? I'd love to hear about any experiences with this.

Amy

Comments

Spoke to doctor today about academic issues...m

Submitted by tripletmom on Tue, 2011-09-20 - 17:12

she says that children with Benign Rolandic Epilepsy are prone to learning disabilities, and that these issues are not cause by the medication and very low dose that my girls take. She said that when they outgrow the BRE, the cognitive abilites will return to as they were before. We need to help them along in the meantime, which might mean approaching their education in a completely different way.

Re: Spoke to doctor today about academic issues...m

Submitted by SolonAAA on Tue, 2011-09-27 - 01:53

Tripletmom - Been there, done that. My son was on Lamictal. We asked the Doctor continually - are there any side effects beyond the rash (it can cause a rash that can be fatal). The doctor said that there was nothing to worry about, concering the meds. He was struggling horribly in school. Here was a kid that taught himself to read at the age of 4 - and could not read his summer reading book going into his freshman year of high school. I finally told my wife that we were going to see another doctor. I wish that we had done it a lot sooner. The new doc told us to take him down on the meds. Sure enough, he started having a few more seizures a day - but his memory started to come back. What I have seen (we have since been to probably 5-6 other doctors) is that doctors have their regimen of how they treat epilepsy. It is not that they are wrong - it is just that they all don't use the same meds to treat the same type of epilepsy. Dylan is under control (he still has a few per week), but we have made the conscious decision that we are not going to sacrifice his cognitive abilities for a few seconds of unconsciousness. My advice to you is go see another doctor. I do not say that your current doctor is wrong in anything that she has said. What she says may be 100% accurate. It is just that I have seen enough of these meds (Lamictal and topomax caused cognitive issues, Keppra made him near suicidal, etc.) that I have a hard time believing that the meds are not causing some of the issues that you are seeing. Additionally, the meds affect kids differently. Hence, a med that your doctor does not normally prescribe may have less side-effects than the ones that she does. At a minimum, you may get her opinion ratified by another doctor, and be sure that you are on the right path. Best of luck.

Re: Spoke to doctor today about academic issues...m

Submitted by MCAmom on Mon, 2011-10-17 - 09:23

My son was recently diagnosed with BRE- as soon as we received the "official" diagnosis, medicine, medicine, medicine........... My sister in law is a Neurologist (in Europe and we're in the U.S.), and advised us to be cautious of medication unless absolutely necessary. She consulted with a pediatric Neurologist friend who suggested lifestyle changes she's had good luck with- reduce stress, hot bath before bed, 10-12 hours of sleep...... funny, the Neuro here mentioned nothing but medicine. It makes me wonder because according to medical literature I've come across, only 20% of children with BRE experience recurrent, frequent seizures. According to the literature, 10% experience one seizure, 60% have >6, and who knows about the other 10%. It's very disheartning reading about the frequent seizures and mutitudes of other problems everyone posting seems to be experiencing.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.