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newly diagnosed
Mon, 04/17/2006 - 14:44Topic: Parents & Caregivers
Hi -- I just found this forum . My daughter has been diagnosed w/ frontal lobe epilepsy (nocturnal) after 2 years of being misdiagnosed with a sleep disorder. Its good to finally have some answers. From her veeg we found she was having seziures every 15 minutes all night long. She is on Trileptal, but we have seen no improvement yet, but its only been 3 weeks so we are hopeful. A big feature of my daughters seziures is lip smacking/chewing as well as arm posturing, kicking, periodic worse ones with wandering,fear, various automatisms,only one tonic/clonic which was the first we were aware of. We were never aware of these milder seizures which did not propel her out of bed, and since her diagnosis have gotten a video monitor so as to be able to tell if the meds are working. Now that we see what these "milder" seizures look like we are concerned for our other children (we have three, ages 8 (fle), 5, and 3) We have noticed they both have nighttime behavior similar to their sisters (kicking legs, smacking lips/chewing motions). I have noticed the lip smacking in all my children previous to all this and figured it was normal, or maybe a holdover from infancy (they were all avid nursers!) Does anyone know if these mouth movements are a normal component of sleep? Does anyone here have a familial form of fle? Thanks.
Re: newly diagnosed
Submitted by kayakmom on Thu, 2006-04-20 - 19:13
I am so glad you finally have the proper dx for your daughter. Hoping the Trileptal will start working more soon. It can take a long time to see results. lip smacking and kicking in sleep can be a normal thing as well as being seizure symptoms. My son has a sleep disorder Periodic Limb Movement disorder as well as Frontal Lobe and temporal lobe seizures. Does the daughter with the diagnosis have a change in behavior after these seizures in sleep? Do your other children have a change in some days or is their behavior consistan? It might be worth asking their pediatrician or her neurologist about this. My guess would be that it is probably a normal thing but it is so much more noticable since your oldest has been diagnosed with epilepsy. Since it is a concern of yours, I would talk to the doctors to see if testing is possible.