Pediatric Neurology Patient Testimonial
For a parent, nothing is more devastating than having a child struck with a serious illness.
The Weber family has been dealing with such a situation since February 2011, when youngest son Jaxson was diagnosed with infantile spasms.
“It was so sudden,” said Jaxson’s mother Jessica Weber. “The whole thing, from beginning to end, is like your worst nightmare.”
They are thankful the team at The Children's Neurology and Epilepsy Center at Saint Clare's has been there to care for Jaxson and to support and guide the family.
“We never could have done this without them,” said Jaxson’s mother Jessica Weber. “It blows any relationship I have ever had with anyone other than family right out of the water. I owe them a lot.”
Jaxson was four months old when Jessica and her husband Bob noted something was off. He would appear to startle, and based on their experiences with their two older boys, the couple knew there was something wrong. A friend thought Jaxson might be having seizures.
The Webers brought their infant to Saint Clare’s Hospital/Denville for an EEG and wound up staying there for a week. Dr. Sandy Waran, medical director of The Children’s Neurology and Epilepsy Center, diagnosed Jaxson with infantile spasms, an uncommon disorder affecting only one infant in thousands.
Dr. Waran put Jaxson on daily injections of ACTH steroid therapy for the seizures, the drug of choice for infantile spasms; while most patients are treated successfully using this therapy, there are occurrences of medication failure. Jaxson went into a remission period, and when the Weber’s stopped using the medicine in mid-May, “we were all under the assumption they would never come back,” said Jessica.
But at the end of June, Jaxson had a seizure reoccurrence.
The Webers brought Jaxson back to Saint Clare’s for another week. After more tests, the doctors determined a small heterotopia (developmental lesion) on Jaxson’s brain likely is causing the activity. They put him on a new medicine, Sabril, and recommended he see a specialist at the Cleveland Clinic, where Dr. Waran and his epilepsy group have an affiliation, to determine if Jaxson may be a surgical candidate. At the moment, the seizures are under control again, and Jaxson is thriving. Jaxson had also experienced developmental behavioral issues, including poor eye contact and irritability, which have improved while on treatment.
“Developmentally, he has not missed one milestone,” Jessica said. “He chases around after his brothers like you’d expect.”
She feels fortunate that they brought Jaxson to Saint Clare’s because of the tremendous care and support they have received.
For instance, with no prompting, the social services’ staff at Saint Clare’s connected the family with the National Organization for Rare Disorders which provided monetary support.
“It’s those little things that mean so much,” Jessica said. “They go beyond, far beyond.”
From the doctors and technicians to the entire nursing staff, the family is grateful to all the people at Saint Clare’s.
“They are the best,” Jessica said. “I will forever be in their debt.”