Luke's Tuberous Sclerosis Page
Kaitlyn's Story |
 I am writing you concerning my daughter who has been diagnosed with Tuberous Sclerosis. Katilyn was born on January 8th, 1993 with no noticed symptoms of TS. At six months of age, she began to have seizures and was diagnosed at seven months. Kaithyn was then diagnosed with TS, epilepsy, partial-complex seizures, developmental delay, language delay, pervasive developmental disorder, behavior problems and low socialization skills. Regarding the seizures, she continues to have anywhere from 1 to 6 per day, she also has episodes of starring and unresponsiveness with arm tremors. She usually vomits afterwards which affects her weight gain. She also has aura's sometimes where she suddenly gets scared. This can be seconds or a few minutes before a seizure. She has been tried on several medications. She is currently on Depakene, Dilantin and Tegretol. She has tried Frisium, Vigabitrin and Epival with no results. She has had several CT scans, EEG's Ultrasounds and Echo's. Her last EEG showed abnormal background rhythm and slowing in the temporal lobes as well as independent multi focal epileptic form activites. Her last CT scan showed multiple subependymal calcified nodules as well as areas of low density suggestive of adenoma sebacia and also multiple hypopigmented lesions throughout her skin. Katilyn is being followed up by a pediatrician, a child development clinic, psychologist and an ophthalmologist. She is to go to speech and occupational therapy. She goes to daycare five days a week to help with socialization skills, speech and language. Katilyn is the first child with this disease in the family. The doctors think it may have been a mutation. Her father, sister, nor I have any symptoms of TS. Update on Katilyn's condition since Dec. 1996, Katilyn was put on a new drug on January 8, 1997 which is called Lamictal, she is still on Depakene, since this new drug was introduced to her system as of Jaunary 11th, 1997, she has had no seizures and is eating more and is finally gaining some weight, is more alert and aware of her surroundings. She sure is a happier little girl. This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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A SPECIAL NEEDS MOM BLOG JOYFUL & JUGGLING
WATCH LUKE'S FOOTBALL TOUCHDOWN ON INSIDE EDITION
LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
