When
Dawn Oginsky, of Flushing, Michigan was in bed with her
six-year-old son Hunter and his brother in May of 2009, she didn’t
think much of the strange noises he was making, discounting it as a
nightmare. But when Hunter started twitching, Dawn whose sister
had epilepsy but outgrew it, immediately knew he was having a
seizure.
Hunter was seen by Harry Chugani, MD, chief
of neurology at the DMC Children's Hospital of Michigan and
professor of pediatrics, neurology and radiology at Wayne State
University School of Medicine, who has seen many cases of LKS and published
several articles on the subject. Dr. Chugani and the neurology
team conducted extensive testing to pinpoint what might be
causing Hunter's seizures. The Children’s Hospital of Michigan
is internationally known for pediatric epilepsy testing, treatment
and research. The program utilizes advanced neuroimaging
technologies – including a 3.0 Tesla Pediatric MRI scanner and one of
the world’s few pediatric PET centers. PET scanning
and advanced EEG techniques pinpoint the origin of epileptic
seizures – enabling neurosurgeons to remove the affected
tissue and dramatically improve the patient’s
condition. Extensive testing confirmed that Hunter had LKS. Meanwhile
Hunter's speech and language problems were becoming profound. “He
couldn’t even say the alphabet. It simply broke our heart
to see our son, who went from normal speech development to not
being able to talk, pronounce words or even follow directions,”
says Dawn.
In December of 2010, Dr. Chugani explained
to Dawn and William that because the disease was so rare, there
were not many proven treatments. “Basically, he said Hunter
could go on medication or try experimental surgery.”
Hunter’s case was discussed with the epilepsy surgery team of
neurologists (epileptologists), neurosurgeons, electroencephalographers,
neuropsychologists, neuropathologists, epilepsy nurses, and others
interested in the program including residents and students who
attend to learn. “Probably less than 10 surgeries of this type
for children with LKS are performed each year in the U.S.,”
says Dr. Chugani. Hunter's parents agreed to go forward with the
surgery.
Sandeep Sood, MD, a neurosurgeon at
the Children’s Hospital of Michigan and associate professor of
neurosurgery at Wayne State University School of Medicine, who
along with several members of the Neurology and Neurosurgery
Department managed the treatment, says they were pretty confident about
where the seizures were coming from. “We determined that the
seizure activity was mostly concentrated on the left side of the
brain that controls speech, vision and hearing.” A procedure
called multiple subpial transection was performed, which involves
scraping, or making slits on the epileptic tissue to disconnect it,
versus removing the tissue which is necessary for speech, vision
and hearing. The surface of the brain was directly monitored with
EEG recordings by Eishi Asano, MD., Ph.D. medical director of
neurodiagnostics, during the procedure until the spikes were gone. When
this happened, Dr. Sood stopped making the slits on the brain.
After anxiously waiting the results of the two hour
procedure, the Oginsky family was elated to hear that the surgery
was considered a success. “Prior to the surgery, his EEG
showed spike and wave activity every three seconds, which can be a
sign of seizure activity. After surgery, he had just one,”
recalls Dawn, who also says there has been no evidence of further
seizures since his surgery.
Since surgery in March
2011, Hunter has been doing exceptionally well. “His
dream has always been to be on the traveling baseball team and we
are so proud that he is now on that team. He is able to follow
directions and is back to reading. His speech therapy team was also
amazed at his progress after only a couple of weeks after his
surgery,” Dawn says.
