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the adventures of a MAD mom

Modified Atkins Diet for Seizures Talk About ItWhen Casey was newly diagnosed with Epilepsy, his seizures were very short and almost undetectable.  After the first medication he tried, Depakote,  made him seizure free, we thought we were home free.  It was not until the side effects kicked in, and we began receiving complaints from his teacher about his behavior did we begin to realize the severity of his condition.  Since Casey was diagnosed in the summer time, the full effects the drugs were not apparant until he began the school year in September.  After his grades plummeted, we found that Casey had been hiding his school work.  Feeling overwhelmed and unable to concentrate enough to complete it,  he had given up. 

Once we found the hidden pile of untouched paperwork, we knew we had a problem.  He had also had a large weight gain from the meds which was not helping his self-esteem, and that also effected his energy level.  The meds made him extremely tired, so he had stopped doing his homework, began to miss Hockey practice and instead fell asleep upon arrival from school.  At this point, we knew we had to switch meds.  There came a long string of other meds, all with crazy side effect.  His teacher began to chastise Casey in front of the class due to his erratic behavior – crazy high-strung for a month, then zombie like the next.  The other students followed suit.  Who once had been a popular and well-loved kid was now isolated and made fun of. 

Needless to say his 5th grade year was less than ideal . The new meds were not helping the seizures, and some in fact were making them longer in duration.  It was his last year of elementary school, and we knew we had to get the meds correct  before he went to middle school in the fall.  Then, just one day after his culmination ceremony, he had his first tonic clonic/grand mal seizure.  I remember it so clearly, driving down the street, on our way to a doctor appointment no less, when the seizure began.  I pulled over and sat with him during what felt like a lifetime of moaning and shaking and jerking.

I spent most of that summer worrying about middle school. We had been lucky enough to get him into a very small Charter school with only 180 students, compared to the 1,500+ student body in most other local Middle Schools.   One of the teachers was pro-active enough to contact the local chapter of the Epilepsy Society , who prior to schools start educated the staff on all matters Epilepsy.  A great new beginning!

A few weeks into school, a teacher came to me and asked if I could speak about Epilepsy in Casey’s class.  It seemed the kids were really concerned about Casey since he was having several seizures a day at this point.  Up to 15 seconds each, he was having over 50 per day, and his classmates didn’t understand what was going on.  I did a little internet research and found a couple great sites to use as a guideline.  Epilepsy Classroom  had tons of information for teachers and students.  But Talk About It  was my favorite site.  I really like the message Greg Grunberg sends, not only “Talk About It” but don’t be afraid to have a little fun in getting your message out there.  The kids really responded to this, and I only wish I had video taped it.  The questions the students asked were priceless and by the end they all felt very comfortable Talking About It.

The kids still come to me after school some days to ask questions, or tell me if they think they have witnessed  a seizure.  In addition to his teachers, I now have 50 eyes on Casey every day, and if that is not a huge relief, I don’t know what is. We were able to meet Greg Grunberg and thank him in person at the LA Epilepsy Walk last year.  As you may or may not know, his son is his inspiration and I am grateful he uses his energy in such a positive way.  If you are listening Greg – thanks again and keep Talking About It!

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