Tia Colvin fears putting her 6-month-old son Jacob Colvin back in the highchair where his seizures first began.

One early morning in the beginning of May Colvin was feeding her son peaches in his highchair when he began to give his mother a blank stare. He next pushed his bottle away and cringed up tensely, squeezing his hands and feet and pulling his head toward his body as he lurched forward.

“He began to scream and scream,” Tia said.

She called 911 and two days later the Colvin family's life changed forever.

After a long process of testing, shots and time spent in doctors' offices and hospitals, Jacob was diagnosed with infantile spasms.

The spasms are a specific type of seizures seen in an epileptic of infancy and early childhood, known as West Syndrome, according to the National Institute of Neurological Disorders and Stroke. Onset is predominantly in the first year of life, between three and six months. The common sign is a sudden bending forward and stiffening of the body, arms and legs.

Since the first episode, Tia and Jacob's father, Rob, say that Jacob is no longer the happy baby he used to be. Jacob used to wake up laughing and talking and now the parents live with Jacob's constant whining.

Jacob has had, at times, 11 seizures a day. Some are described as short and some are long and intense, including at one point, a six-minute episode with about 21 seizures.

“There's not much you can do,” Tia said. “When he starts you just have to hold him in your arms. He screams but you just wait for the end.”

Unfortunately for the Colvins, the spasms are one of the most rare type of seizures. A cure is unknown, and Jacob's future is unclear.

“It's not the kind of life I want for Jake and we just don't have any answers,” Tia said.

According to the Institute, spasms usually stop by age 5 but are often replaced by other types of seizures. West Syndrome is often characterized by infantile spasms and mental retardation.

Jacob's doctor, Dr. Javier Monreal, who runs a practice in Syracuse, said the syndrome is very uncommon.

“It's definitely considered rare,” said Stefanie Putkowski, an RN for the National Organization for Rare Disorders. “You can't tell the future. Some kids outgrow it but many develop another type of seizure. Some develop mental retardation, but not always.”

Putkowski explained that doctors have a sense that seizures stem from something secondary and related to the brain but don't believe it's inherited.

Jacob will go for a brain scan in two months to determine if he received any brain damage as a result of the seizures.

The Colvins have been traveling to Syracuse to see Monreal because locally no pediatricians have really dealt with the seizures before, Tia said.

Monreal has prescribed the only existent medication known to reduce the amount of seizures, which comes in the form of a shot. Yet the medication causes severe side effects, including weight gain and hair growth.

“You're such a good boy,” Tia whispered into Jacob's ear as he lay calm and motionless while Rob inserted Jacob's once-a-day shot into his leg. Medication has caused Jacob to gain weight and eat more. The baby has already gained six pounds from his 20 pound weight in June. The high cost of the medication and increased need for formula and diapers has also caused the family financial struggles.

“He's going to lower the medication because the seizures have stopped but I'm afraid. I'm constantly watching him,” Tia said.

Staff writer Kristina Martino can be reached at 253-5311 ext. 238 or kristina.martino@lee.net