Ketogenic diet turns around a boy’s severe epilepsy

ketogenic diet epilepsy
Sammy enjoys the coconut oil cookies that helped him become seizure-free.

In 2012, just before starting kindergarten, Sammy Meyers had the first of what would become thousands of seizures.

“I found him semi-unconscious,” recalls his mother, Becky. “I thought he was choking and checked to see if his airway was open, and then called 911. It didn’t even cross my mind that he was having a seizure.”

But Sammy had recently been falling a lot. The neurologist in the local emergency room in Albany, N.Y. diagnosed epilepsy, but thought it was a relatively benign form that medications could help.

Instead, Sammy got worse. “Within a matter of months, he went from four seizures a day to hundreds,” says Becky.

Sammy was having head-drop seizures, involving a sudden loss of muscle tone; myoclonic seizures, causing muscle jerking; and absence seizures. He would lose consciousness, sometimes so abruptly that his head would slam down on the table. Eventually, he was diagnosed with Doose syndrome (myoclonic astatic epilepsy), a severe form of generalized epilepsy that is known to be medication-resistant.

Through the Epilepsy Foundation of Northeastern New York, Becky knew of another child with Doose syndrome who had been treated with a high-fat, very low-carbohydrate diet called the ketogenic diet and was still seizure-free after four years.

The Albany neurologists were skeptical, so the family contacted the other child’s neurologist, Ann Bergin, MB, ScM, at Boston Children’s Hospital. “By this time, Sammy was having a seizure every 30 seconds to a minute,” says Becky.

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The art of healing: Spinal fusion patient Dylan Morang fights through pain for his art

dylan-morang-art-exhibit-1

The purpose of art is washing the dust of daily life off our souls. – Pablo Picasso

Ever since he was a young boy growing up in Rockland, Maine, Dylan Morang has been artistically inclined. His mother remembers him often sitting at his little desk, happily consumed by his coloring. When he wasn’t drawing, he was gathering inspiration along the beautiful rocky shores and through the deep woods of Maine.

Dylan is now 24, and his love of art has only grown. He studied art in college, taught himself Photoshop, and is currently exhibiting his artwork at Boston Children’s Hospital, where he underwent two surgeries for severe scoliosis and osteogenesis imperfecta, a hereditary disease that causes weak bones.

Hordes of visitors stop to admire the rich watercolor paintings and vibrant graphic designs inspired by the artist’s home: a great horned owl, a fern frond, a Chesapeake Bay blue crab. About his work, Dylan says, “I’ve just always loved art and experimenting with different color combinations.”

raccoon Owlbert

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Six ways to reduce young football players’ concussion risk

shutterstock_84227776Linebacker Chris Borland has retired from a promising NFL career at 24-years old, citing concerns about his safety. The rookie, who had sustained concussions while playing high school football and eighth-grade soccer, felt the risk of continuing to play football outweighed the benefits, including his $420,000 salary.

Is it possible to keep young players safe while playing football? Some parents have guided their children into sports that are perceived to be safer, like baseball, basketball and soccer. But all activities pose some risk, and for some young athletes, football is it.

How can parents and coaches reduce players’ risk of injuries, particularly concussion? Michael O’Brien, MD, director of Boston Children’s Hospital sports concussion clinic, weighs in.

  • Make sure your child’s sports equipment is in good condition and fits properly.
  • Insist on a culture of safety that does not reward overly aggressive or dirty play.
  • Ensure that coaches are up to date on safe practice and tackling strategies and have kept up with concussion education.
  • Focus on fitness: building neck and shoulder strength, as well as improving overall fitness, may lessen the risk of concussion.
  • Make sure your child is able to recognize the symptoms of concussion and knows to speak up if symptoms are present.
  • “When in doubt, sit them out,” means that if concussion is suspected, an athlete should be out of practices or games until he can be evaluated by a medical professional.

Computerized testing (like ImPACT) that assesses an athlete’s verbal and visual memory, processing speed and reaction time can provide a useful tool for doctors to use in determining when it is safe for an athlete to return to after concussion. Players and teams can schedule ImPACT testing at Boston Children’s Boston or Waltham sites.

Learn more about concussion prevention programs at The Micheli Center for Sports Injury Prevention.

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How craniosynostosis turned a Costa Rican family into New England Patriots fans

Marcel and MomLike many new mothers, Lyana Guzman Gutierrez was exhausted but overjoyed after giving birth to a healthy and beautiful baby boy. But within two weeks, Lyana, who lived near San Jose, Costa Rica, noticed that Marcel’s eyes and other facial features were not aligned.

Lyana’s mother urged her to bring Marcel to the pediatrician, who referred her to a local radiologist. The specialist diagnosed Marcel with craniosynostosis, a condition in which the fibrous joints or sutures between the plates of the skull fuse too early during a child’s development. This resulted in asymmetry of Marcel’s head which, if left untreated, could lead to further disfiguration, brain and skull growth issues and possible neurological complications.

Through her research, Lyana had already suspected Marcel had craniosynostosis and started exploring her options. Though the neurosurgeon in Costa Rica was willing to treat Marcel, Lyana explains, “My husband and I were looking for the best doctors and the best place in the world to treat Marcel, and we were going to do whatever it took.”

Lyana’s research led her to Boston Children’s Hospital’s website and a video of Mark Proctor, MD, vice chair of neurosurgery. “Something was telling me, you can trust this guy. He’s the one. It was a mother’s instinct.”

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