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My Hero Band #6
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Hero #6 Updates
| Hero Family #6 |
 
 LeahLeah suffers from Dravet Syndrome, which causes her to have tonic clonic (grand mal), myoclonic and absent seizures, she is also prone to non-convulsive Status Epilepticus. Leah is photosensitive (strobe lights, flashing lights and many video games can give her seizures).
Leah is ultra sensitive to temperature variation, the slightest sudden change warm or cold can cause her to have a seizure. Which is why almost every bath causes a seizure. Outdoor activities are limited, because she can not tolerate temperature changes. Even the slightest fever will automatically trigger a seizure. Unfortunately, even emotional stimulation and excitability will cause seizures.Leah has significant development delays including poor fine and gross motor skills, minimal language skills, and a wide, unsteady gait. Leah suffers from many autistic characteristics including no regard for her safety or understanding of consequences of her actions. Leah also suffers from Von Willebrand disease which is a blood clotting disorder. So far we have been told that it is unrelated to her Dravet Syndrome. Leah's first seizure occurred the week of her first birthday in January 2003 while travelling on the Pennsylvania Turnpike. She remained hospitalized several hours from home for more than a week.Leah was Life Flighted several times and had numerous PICU (pediatric intensive care unit) stays. Christmas of 2004 Leah began to turn blue during a tonic clonic seizure. Diastat and Oxygen were prescribed for use during these seizures. In 2006 at the age of 4 Leah suffered a non-convulsive Status Epilepticus, and was put into a coma like state for 45 days. She remained in intensive care for the better part of 3 months including Easter. She was then transferred to The Childrens Institute for recovery therapy. Two months later Leah required surgery to have a VNS (Vagus Nerve Stimulator) implanted. Her VNS is programmed to turn on every 0.8 minutes and runs for 30 seconds. When Leah has a seizure, we have a specialized magnet to manually activate the VNS. A month later during Halloween Leah was hospitalized again for multiple status seizures. In January 2007 on her 5th birthday Leah was again hospitalized in the PICU, this time for Pneumonia and non responsive behavior. Unfortunately, at this time Olivia was also in the PICU for severe status seizures. Leah continued to be Life Flighted and admitted to the hospital regularly due to seizures caused by fevers and complications from respiratory and ear infections. In September 2007 Leah had her tonsils and adnoids removed in the hope that she would get fewer fever causing throat infections. As a result of complications from the surgery Leah spent an additional 3 weeks in Intensive Care. Leah has never been seizure free. She continues to have grand mal seizures weekly and myoclonic and absent seizures daily. At the present time, Leah is a lovable, pleasant child who receives physical, occupational and speech therapy at her special needs school when she is not ill or hospitalized. She has several nurses that provide in home care and have become members of the family. OliviaOlivia was born in January 2005 and began having seizures at six months in 2005. Her first seizure occurred in the parking lot at the bank.
She was taken by ambulance to the local hospital and then life flighted to the local Children's Hospital. She was admitted to the PICU and remained there for a week.
She remained seizure free until the day of her 2nd birthday 2007. She suffered several severe seizures and permanent brain damage to the left side of her brain. Unfortunately, Leah was also in the PICU with pneumonia at this time. Olivia remained in the PICU for several weeks and was to be sent home on a feeding tube. We were told she may never walk again and it was likely the right side of her body would never regain full function. Olivia immediately began receiving physical, occupational, and speech therapy in the home and aggressive outpatient physical and occupational therapies. Part of Olivia's aggressive therapy was the casting of her left arm to force her brain to utilize the right side of her body. We saw results immediately, currently Olivia feeds herself, receives outpatient physical and occupational therapy, and will begin pre-school in a special needs school where she will receive physical, occupational, and speech therapies. Olivia also has Chiari Malformation type 1, her brain stem formed low and into her spinal cord. She also suffers from sleep apnia. Neither of these is considered to be related to her Dravet Syndrome. Olivia is a beautiful, happy child who loves Dora and her Build A Bear puppy. 
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