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subclinical seizures
Tue, 06/22/2010 - 17:54My daughter is 13, has a 13 year history of seizures and all the testing and AED therapy that goes along with that and has an undiagnosed underlying neuromuscular disorder (cerebral palsy for lack of a more finite definition). She is on Lamictal and Tryleptol. She has been diagnosed via eeg recently, and again today with subclinical seizure (SCS) activity. I address this to anyone who is directly affected by, or the immediate care-taker of, a person with a like clinical diagnosis (idiopathic or otherwise): All this begs the question for me right now of when is enough enough? Where do I cut off the "lab rat" experimentation for quality of life, "dad, just let me be me" action? I'm at a loss already with where to take this child. She is non-verbal but she is very expressive and can sometimes give clear answers to questions with adaptive communication device(s). I know this is pretty much an impossible question to answer--I'm not even sure why I'm bothering to ask it--maybe just to get some sort of peace of mind. Any answers with regard to SCS and whether one can live on indefinitely with them and a combination of AED therapy would be appreciated. thanks
Re: subclinical seizures
Submitted by Aylas father on Wed, 2010-11-03 - 02:06
You ask "when is enough enough?". Have you considered the ketogenic diet? Our daughter (now 4 yrs old) went through 2 years of daily seizures of several different seizure types. We tried combinations of 9 different anti seizure meds and she was reduced to a non-verbal, non functional shell of a little person. We started the ketogenic diet in February of this year. It took time but as of today she is 3 months seizure free! She is running around the house getting into everything she can get her hands on. She is learning to talk again and she communicates in many different ways. She laughs and smiles and cries and tells us "NO" We do not know why she was having seizures, nor do about a dozen specialists over the years but we do know that the ketogenic diet is bringing her back to us and she is almost med free. If you want more info. and/or resources just let me know. There are many of us who have had good results with this diet and are happy to share our experiences.
Ayla's Father
You ask "when is enough enough?". Have you considered the ketogenic diet? Our daughter (now 4 yrs old) went through 2 years of daily seizures of several different seizure types. We tried combinations of 9 different anti seizure meds and she was reduced to a non-verbal, non functional shell of a little person. We started the ketogenic diet in February of this year. It took time but as of today she is 3 months seizure free! She is running around the house getting into everything she can get her hands on. She is learning to talk again and she communicates in many different ways. She laughs and smiles and cries and tells us "NO" We do not know why she was having seizures, nor do about a dozen specialists over the years but we do know that the ketogenic diet is bringing her back to us and she is almost med free. If you want more info. and/or resources just let me know. There are many of us who have had good results with this diet and are happy to share our experiences.
Ayla's Father