Name: Dustin Bartek

Sex: male

Date of birth: November 6, 1990

Now lives in: Dwight, Nebraska


Epilepsy info

Diagnose:
Dravetís Syndrome, Diagnosed with SMEI in 1996, no DNA testing

type(s) of seizures:
tonic-clonic, myoclonic, absence, complex partial

frequency of seizures:
tonic-clonic followed by myoclonics during sleep every 7-9 days with breakthrough tonic-clonics every 10-12 weeks; myoclonics, absences and complex partials sporadically

Medications used

Current:
depakote, carnitor, felbatol, clonazepam



Previous:
keppra, nitrazepam, and a slew of others


Alternative Treatments

-


Personal Notes

Dustin had his first febrile seizure at around 11 months of age. It was dismissed as a fluke until a week later when he had another. This went on for several months, with no other symptoms, until he went into a status seizure that lasted 6 hours. He was in and out of the hospital with these long, uninterruptible status seizures for several years until the correct combination of medications finally controlled the majority of the seizure activity. He was not able to walk until close to his 6th birthday. He could only speak a dozen broken words and was unable to feed himself. Once his myoclonic jerks were controlled he was able to begin walking, feeding himself and living a more independent life. He began mainstream kindergarten and has flourished there in the special education program. He is currently able to do most of his activities of daily living with moderate assistance. He can recognize numbers up to 40, all letters of the alphabet and about 12 words. He has a great quality of life. His mental retardation is severe enough that he is unaware of the differences between himself and his peers, but isnít so severe that he canít enjoy lots of things in life. Which, honestly, is a blessing. He does suffer from severe scoliosis and deformities in his legs, feet and face. Additionally, his balance, coordination and intellectual ability are adversely affected by his medications. He is seen in a developmental clinic at Childrenís Hospital in Omaha, Nebraska once a year and works with a physical therapist, occupational therapist and speech therapist at school every week. We hope to have DNA testing done for the SCN1A gene mutation once it is available in the US.


Contact

Mum: Kim Bartek (eyeore22@alltel.net)


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