Team Taiberius Foundation

What is Tuberous Sclerosis?
Tuberous sclerosis--also called tuberous sclerosis complex (TSC)1--is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It usually affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease.
The disorder affects as many as 25,000 to 40,000 individuals in the United States and about 1 to 2 million individuals worldwide, with an estimated prevalence of one in 6,000 newborns. TSC occurs in all races and ethnic groups, and in both genders.
The name tuberous sclerosis comes from the characteristic tuber or potato-like nodules in the brain, which calcify with age and become hard or sclerotic. The disorder--once known as epiloia or Bourneville's disease--was first identified by a French physician more than 100 years ago.
Many TSC patients show evidence of the disorder in the first year of life. However, clinical features can be subtle initially, and many signs and symptoms take years to develop. As a result, TSC can be unrecognized or misdiagnosed for years.
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OUR STORY:
In early January 2011 after a week of noticing that Taiberius (10 months old) was having some odd behavior, like staring off and not being able to focus and having slight body shakes we took him to the pediatrician who was concerned that he may be having some seizure activity. He sent us to Boston Children’s hospital for an EEG. Upon arrival at the children’s hospital we were seen by a few doctors who sent us home without the EEG we were originally sent there for saying that they did not do them in the ER and that his diagnosis was acid reflux. Upon two hours of getting home Taiberius was put to bed. About 30 minutes into his sleep I heard him gasping I went to him to see that his was not breathing and his eyes were rolling up and his lips were blue…I immediately called for his godmother who called 911. We were then rushed to Brockton Hospital, upon arrival with his Blood Pressure and vitals being so low they got him stabilized then sent us to Tufts Floating Hospital for children. In the ER that night we, Myself, Taiberius and his Godmother sat through tests upon tests desperate to find out what caused this seizure, were eventually told that during the Catscan they seen abnormal spots on his brain and were admitting him to the PICU (Pediatric Intensive Care Unit).

After a 5 Day stay we were finally giving a diagnosis Tuberous Sclerosis Complex, along with Infantile Seizure Spasm. Our first week home Taiberius was having clusters of spasms every 5 to 10 minutes all day and night. After a year of adjusting medication a million doctor’s appointments and experiencing different seizures such as; silent seizures, petite seizures, drop seizure, stare seizures, and recently a full blown epileptic seizure where he seized for 2hrs stopped breathing and lost consciousness, he was intubated and sedated for 24+ hrs.  Taiberius takes medication twice a day for his seizures Sabril (Viagabitirn) & Kepra and a vitamin B6 50mg (once a day).  He wears glasses, his development has been deemed that of an 18month old and his depth perception is severe, he has at least 10 tumors in his brain (which may one day need surgery), 2 on his heart and over 6 cysts in his kidneys.

His Neurologist has stated his need for a seizure dog is pertinent…suggested dogs are Labrador Retrievers….they are specifically and diligently trained to be what is known as “Seizure Dogs” these dogs will alert you if a seizure is sensed or onsets and if the child falls the dog will lie under them to break the fall for their safety.  After looking online for the dog it will cost between $600.-$1,000. to purchase the dog and the doctor stated between $10,000-15,000 to train the dog.  As for me I take each day as it comes it is very hard to see your child go thru so much especially before they have had a chance to live and to see your child almost lose life is more than hard. Any donations would help greatly.

Thank you for reading.  - Team Taiberius Foundation