New to Rolandic Epilepsy/ Night time seizures, Please read...

Lana - posted on 08/30/2011 ( 2 moms have responded )

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My 6 year old daughter was just diagnosed with Rolandic epilepsy after having her second grand mal (tonic-clonic) seizure last week. Her first seizure was 10 months ago. I am interested in hearing about your experiences to help me cope with ours as I am feeling scared and alone.
Things that would help to know about other kids w/ Rolandic Epilepsy:
How many seizures has your child had?
Where they partial, complex partial or grand mal (tonic-clonic)?
How often do they occur?
Have you noticed a trigger (i.e. overtired, stressed, sick)?
How do you know when they are having a seizure if you are not in the room?
Thank you in advance for any and all replies. I am hoping that talking to other moms might help me deal with the constant anxiety/fear!
~Lana

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Julie - posted on 09/12/2011

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I have a 7 year old son who has rolandic epilepsy. He has partial and grand mal seizures. Sickness is his trigger. He has a seizure first and then the symptoms of his illness. We are on trilepital. We started on a low dose but we have now progressed to a moderate dose. He has had 5 seizures over the past two years while on medicine. What I have learned about epilepsy is that you can not predict it! We were told that if we find his pillow soaking wet than he had a seizure in the night. Another way is if he does not seem "with it" he is always exhausted and unresponsive after a seizure. We have witnessed the majority of his seizures. It takes awhile to find your footing with this disease. It seems that it always has a curve ball to throw at you.We check on our son through out the night and we do everything possible to keep him healthy. You are not alone in your fear and anxiety! I hope that I helped you.

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Nicolle - posted on 11/13/2012

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i feel your pain my daughterwas diagnosed last nov she went almost 9 months w/out know she was just had 4 w/in 3wks The last 3 were facial only and she remembers her mouth shaking and me calling for her father. I wish i new how often they were occur b/c im trying to figure out about meds or not she has been sleeping w me had bad storms where i live and that was first i just notice so she in my bed since then

B4 that I had a baby video monitor in her room and never heard or seen anythng.

cant believe this but i cant wait for puberty and hoping she outgrows them Any other mother wont want puberty but im ready

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