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the adventures of a MAD mom

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On January 5th, we were lucky to have the opportunity to attend the Epilepsy Foundation of Greater Los Angeles Family Holiday Party & Parents’ Forum.  It was a picture perfect day in Santa Monica at the Annenberg Community Beach House with sunny skies and mild temperatures.  Upon arrival we were enthusiastically greeted by the wonderful volunteer staff, including Nathan Jones who immediately made Casey feel at ease with his enthusiasm and warmth.  If you get the chance, check out his website and video A Seizure by Nathan Jones, helping to raise epilepsy awareness:  http://www.a-seizure.com/A_seizure_by_Nathan_Jones/A_Seizure_by_Nathan_Jones.html

Kids and parents alike were given the opportunity to mingle and chat.  Nathan lead  sports activities outside on the beach with the teens, while the younger kids had a plethora of arts of crafts to work with indoors.  There was even a meeting room for adults filled with art supplies which I found very therapeutic.  I can’t remember the last time I was able to sit down and paint.

After a delicious lunch,  a parent forum was led by Raman Sankar, MD, PhD,  Professor of Neurology and Pediatrics and Chief of Pediatric Neurology at the David Geffen School of Medicine at the University of California, Los Angeles.  He is also the Director of UCLA’s Ketogenic Program, and we have been lucky enough to work with his group over the past 2 years.   The meeting was very informative both to families new to the diagnosis as well as veterans.  It was nice to relax knowing our kids were being well taken care of by others who knew exactly what to do in case of a seizure.  It allowed us to focus on the meeting and have meaningful dialogue without distractions.  We had the chance to learn more about the other families in attendance and form relationships with those also living with the effects of epilepsy.  There were several other families practicing the Modified Atkins Diet or the Ketogenic Diet and after the forum we introduced our kids to each other.  I had to chuckle when Casey was introduced to one girls whose first comment when she found out he was on the same diet was “So you don’t get to go out to restaurants either?”.   I think it was really helpful for the kids to meet others who were going through the same challenges.  It is truly amazing how strong they all are.  Many of the volunteer staff were young adults living with Epilepsy and were great role models for the kids in attendance.   Casey is raring to volunteer knowing he can work with cool people like Nathan and the others.

One of the highlights of the day for me was meeting and having a lengthy conversation with Jim and Nancy Abrahams.  After their son Charlie found success with the Ketogenic Diet after suffering uncontrolled seizures up to 100 times a day, they founded the Charlie Foundation to help cure Pediatric Epilepsy, back in 1994.  I feel we owe a great debt to them for bringing the Ketogenic Diet diet into the public eye and making it more accessable to anyone willing to try diet therapy.  I am certain that if it were not for this amazing couple, our family and many like ours would be living a very different life today.  I was also finally able to make a personal confession to Jim that has given me nightmares for over 3 years now.  At the LA Walk for Epilepsy back in 2009 I very smugly walked by his booth thinking to myself, “no way in hell will we ever try something like that”.    I think he understood, and  now I can move on with one less thing to worry about.

As we were gently swept out of the building, I think there were many of us that didn’t want the day to come to an end.  A big Thank You to Susan Pietsch-Escueta, Executive Director of the LA Epilepsy Foundation of Greater Los Angeles along with everyone else who made this such a special day.  I would highly recommend that you and your family get involved with your local chapter in order to form a greater network for you and for them.

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