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RenitaRob

Child with partial complex temporal & absence seizures

Hello Everyone,

My name is Renita and I have a 12 year old son who was just diagnosed with Epilepsy. I am overwhelmed. I am trying to learn about it as much as I can, but I think the best way to find out about it is from those of you who have been there. Looking back, my son had been having absent seizures lasting 10 seconds or so for a couple of years. We do not have a family history of Epilepsy, so we did not recognize them. We thought he was just daydreaming or not paying attention. He has also had two episodes over the last year of being in a trance-like sleepwalk that scared me, not being able to wake up but not being fully asleep. The ped neuro suggests those episodes were due to complex partial absence seizures. They have started him on meds, and the absence seizures are down to one/day from 30/day. Still concerned about possible side effects. I am a bit confused about his diagnosis, as they said he has juvenile absence epilepsy along with complex partial temporal lobe seizures. The Nurse practitioner we spent the majority of our time with suggested he may outgrow it, but when the ped neuro joined us at the end, he said it would most likely be lifelong. Since the age cut-off of childhood vs juvenile absence seizures is around age 10, and he began having these episodes at the age, would there still be a chance he could outgrow them? The scariest stat for me was that he had an 80% chance of having a grand mal seizure. This is all so new to us. We have a 24 hr video EEG on Thursday to tell them if the temporal lobe ones are still occurring. My son is having trouble adjusting to the possible impact of all of this. As if puberty was not hard enough already! I would really appreciate any and all advice on how to deal with everything, especially in regards to supporting my son. I would also love to hear from anyone who has had a similar experience. Thanks so much!