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subclinical seizures

Tue, 06/22/2010 - 17:54
My 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

Comments

Re: subclinical seizures

Submitted by pgd on Wed, 2010-06-23 - 05:20
Possible resource - http://www.hemihelp.org.uk/ - Best wishes.

Re: subclinical seizures

Submitted by phylisfjohnson on Wed, 2010-06-23 - 12:06

Do you have any teaching hospitals near you for a true differential diagnosis? 

The U.S. World & News Report has an annual survey of hospitals which includes Best Neurology & Neurosurgery Hospitals in the U.S. The survey is based upon doc recommendations, facilities and patient satisfaction.  I can't give you the link here because when I tried, the post was blocked as "spam."  But you can either google it or go to my website to find it.

Good Luck!     Phylis Feiner Johnson    www.epilepsytalk.com

 

Do you have any teaching hospitals near you for a true differential diagnosis? 

The U.S. World & News Report has an annual survey of hospitals which includes Best Neurology & Neurosurgery Hospitals in the U.S. The survey is based upon doc recommendations, facilities and patient satisfaction.  I can't give you the link here because when I tried, the post was blocked as "spam."  But you can either google it or go to my website to find it.

Good Luck!     Phylis Feiner Johnson    www.epilepsytalk.com

 

Re: subclinical seizures

Submitted by bobdee on Wed, 2010-06-23 - 13:37
Teaching hospitals? I live in New York City. We have the best hospitals in the world. You misunderstand. You're answering the question "at a loss of where to take this child". What I meant by that is, where to take her with regard to a "next step". "Pull straight and miss"

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