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New here- advice?

Sat, 03/18/2017 - 13:23
I'm going to try to keep this short... my daughter is 7. At 5 she was diagnosed with Benign Rolandic Epilepsy. Just this week we did an at home EEG due to her complaining of bad migraines a couple times a week starting 2 months ago. This EEG showed the BRE, as well as, a new diagnosis of juvenile absence epilepsy. In just over 2 years, she has only had 4 witnessed seizures. We have stayed medication free thus far, but I am sure with the new diagnosis we may have to explore our options as far as medicating. Day to day, she doesn't let it slow her down. She wets the bed at random intervals, sometimes every night, some weeks not at all. She has daytime accidents as well, and will tell me she didn't know she was wet, which I am unsure if it's related to absence seizures or not. Otherwise, chronic constipation and random rashes with no knowe cause [again, not sure if either relate] are the only daily issues I can think of. School seems ok, she has trouble completing work on time some days, has struggled with reading but excels otherwise, and occasionally the teacher complains of adhd-like behaviour. She plays multiple sports year round, normally soccer and swimming. I'm not sure exactly what I'm looking for but a coupletter questions for parents whose child relates or have been through this. Medications- what worked for you, what didn't, what to avoid, do you even medicate and if not why? School- what have you done to help school life/minimize any effects of the epilepsy at school? Daily life- do any of your children have chronic constipation or urticaria? [Hives or rashes with no known cause]. How do you handle the constant clothes or bedwetting or does your child do that? Also, have you found any diet worked to minimize either effects or seizures themselves? I appreciate all responses. I am new to this and have done minimum research on absence epilepsy, and the research on rolandic is 2 years old and winging it. Thanks!

Comments

have you read the info on

Submitted by Amy Jo on Sat, 2017-03-18 - 15:04
have you read the info on this site?http://www.epilepsy.com/learn/types-epilepsy-syndromes/juvenile-absence-epilepsyILAE's site has let their certificates lapse but the info on this page notes that Rolandic epilepsy is thought to be on a spectrum/continuum of epilepsies (with types sometimes changing to other types). are you working with an epileptologist? our docs is an epileptologist whose expertise is reading EEGs. might be worthwhile to have someone like that review your child's EEGs if you are only working with a regular neurologist.our child has a very different kind of absence (but shares aspects which might put her on that spectrum), seizures are controlled with meds. without meds school performance would be adversely impacted from seizures. our child takes lamotrigine which is not the usual first choice for absence but she initially started it to help with focal seizures. lots of epilepsies can affect autonomic nervous system or have comorbid conditions. that could explain some of the other issues your child has. definitely ask your doc, or an epileptologist. it could also be completely distinct from epilepsy and consulting a gastroenterologist might be helpful. we were working with a gastroenterologist when we found that the problems our child was complaining about were seizures (they were simple partials), and meds for focal seizures reduced those seizures considerably. 

whups, forgot the ILAE page.

Submitted by Amy Jo on Sat, 2017-03-18 - 15:06
whups, forgot the ILAE page..https://www.epilepsydiagnosis.org/syndrome/ects-overview.html

have you read the info on

Submitted by Amy Jo on Sat, 2017-03-18 - 15:06
have you read the info on this site?http://www.epilepsy.com/learn/types-epilepsy-syndromes/juvenile-absence-epilepsyILAE's site has let their certificates lapse but the info on this page notes that Rolandic epilepsy is thought to be on a spectrum/continuum of epilepsies (with types sometimes changing to other types). are you working with an epileptologist? our docs is an epileptologist whose expertise is reading EEGs. might be worthwhile to have someone like that review your child's EEGs if you are only working with a regular neurologist.our child has a very different kind of absence (but shares aspects which might put her on that spectrum), seizures are controlled with meds. without meds school performance would be adversely impacted from seizures. our child takes lamotrigine which is not the usual first choice for absence but she initially started it to help with focal seizures. lots of epilepsies can affect autonomic nervous system or have comorbid conditions. that could explain some of the other issues your child has. definitely ask your doc, or an epileptologist. it could also be completely distinct from epilepsy and consulting a gastroenterologist might be helpful. we were working with a gastroenterologist when we found that the problems our child was complaining about were seizures (they were simple partials), and meds for focal seizures reduced those seizures considerably. 

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