Saturday, January 19, 2008

Community helps 5 years girl with seizure disorder

Five-year-old Madison G. Sanders likes puzzles and books. She enjoys playing dress-up and listening to music.

But she is a girl of few words. Those words increase day by day, though, and for that, she and her family owe some thanks to their community.

The few words she had in her vocabulary as a very young child were taken from her when she began having seizures at 18 months.

Madison's parents, Rhonda J. and William C. Sanders, of Turners Falls, had noticed that the second of their three children was delayed and when she was a year old brought in help.
Madison and her 7-year-old brother, Hunter C., have developmental delays and epilepsy. The youngest of the Sanders children, Abigail E., 4, has developed normally but has had fever-related seizures.

From the time Madison was 18 months old until she was 3, she tried seven seizure medications, but none made her seizure free. Not even a special high-fat diet relieved her of the seizures. She saw a metabolic specialist, geneticists and an epilepsy specialist in Boston, but still the seizures continued.

So when her mother heard about the Mayo Clinic in Rochester, Minn., Rhonda Sanders went online and contacted it. Within 20 minutes an intake person there called her for more information and before she knew it, she and her daughter were headed west. Doctors at the clinic thought they could help Madison.

After tests showed the doctors the seizure activity was pinpointed in the right temporal lobe, it was decided that Madison would have surgery to remove part of that lobe and part of the hippocampus, an area of the brain associated with basic drives, emotions and short-term memory.

The surgery took place in October, and since then Madison "has done amazing," said her mother, a nursing home licensed practical nurse.

Prior to the surgery, Madison had 12 to 15 seizures a month; she's had about a half dozen in the two months since surgery. She continues to take medication and eat a high-fat diet.

When she has a seizure, Madison "pretty much stares off" and might get pale with ruby-colored lips, her mother said. It lasts for between 15 and 30 seconds, and her parents talk her through it. When it is over, she might lay down or, more often, get back to what she was doing.

Not long after the surgery, Madison said "hi," and her vocabulary is continuing to grow. Her mother is eager for her to string words together for a sentence, but for now random words like "purple" and "Abigail" are thrilling.

"We always knew she was in there," Rhonda Sanders said. "It was like a piece of her was missing"
Now Madison plays with her siblings and classmates in preschool at Hillcrest School in Turners Falls, and she focuses more on projects. She can walk from her classroom to the cafeteria and doesn't need to be pushed in a stroller like before the surgery. "She has come out of her shell," her mother said. "She's just so into the world now."

Rhonda Sanders expressed gratitude to the Montague Elks, the Turners Falls Fire Department, the St. Stanislaus Society and the family and friends who donated about $5,000 to help the family with expenses such as airfare, meals and hotel stays associated with Madison's hospitalizations in Minnesota.

"We truly appreciate everything they've done," she said. "It was such a huge help."

Madison has a follow-up appointment at the Mayo Clinic on Jan. 20, and her brother will be going for an evaluation with the hope he too can get help.


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