FAIRMONT — Nadine Lloyd first noticed her son might need extra care when he was three months old.
“He has cerebral palsy,” Lloyd said. “He is nonverbal, nonmobile. He doesn’t walk, he doesn’t talk, he can’t sit up independently. He can for maybe a few seconds, but that’s about it. It’s hard for him to play with toys because usually his body’s so tight it doesn’t allow him to stretch his muscles and be able to play with toys and stuff like that. So, he’s very dependent on us for everything.”
Everything in this case, extends to medications as well. However, due to a surgery performed for the first time at WVU Medicine Children’s Hospital, Lloyd can have an easier time providing the kind of care that her son, now 8, needs to live a better life.
Neurosurgeons at the hospital implanted the hospital’s first intrathecal drug delivery system for children who are diagnosed with severe spasticity. Spasticity is defined by doctors as when a child’s brain and spinal cord do not send appropriate signals to muscles, causing them to become extremely tight or stiff. It’s one of the symptoms of cerebral palsy, among other disorders or even as the result of a brain injury.
Dr. Manish Ranjan implanted the device into the child. Ranjan is a surgeon and assistant professor of neurosurgery at WVU. Ranjan said treatment involves medication to manage the condition, but there’s a limit to how much medication can be given. Since the medication needs to be delivered in high amounts, it can cause a lot of neurological and general side effects.
“So to avoid those things, what we can do is we can implant a medication pump that delivers the medicine in a controlled way throughout 24 hours non-stop,” Ranjan said. “And, that can be programmed externally based on the patient’s need and adjustment over time if that’s needed. So, that eliminates a lot of oral medications and side effects of that.”
Ranjan said previously, children who suffered from spasticity would have to leave the state to access this kind of treatment elsewhere. Now, children and their families can stay in West Virginia and receive the treatment they need. It’s beneficial for families, because there’s a lot of family commitment and dynamics that kids with special needs, need, he said.
Determining if a child patient is a candidate requires a process.
First, a child must be managed by a pediatrician or pediatric neurologist to determine if their patient’s medication isn’t effective or cause a lot of side effects. Then, those patients are evaluated as candidates for an implant.
The patient is given an intrathecal injection, which involves injecting medication directly into the spinal fluid surrounding the spinal cord. The injection is similar to a lumbar puncture and done in the lower back region. Doctors assess the patient’s reaction to the injection, and if the patient does well, they are considered a good candidate for the implant procedure. A medication pump is placed in the anterior abdominal wall, where a small catheter runs to the spinal canal. Medication is then pumped into the patient’s spinal fluid.
The medication lasts for two to three months, and can be administered as needed by programming the device. Medication can also be refilled at home.
“It’s wonderful,” Ranjan said. “In fact, a few of the studies have shown that acceptance of this therapy, which is in nearly about 100%, so everybody is happy with this. Most of them, when this is effective, patients love it. Families love it because they see movement and all these things which was not there with the kids before.”
Lloyd, says she sees a large improvement with her son. He seems happier, and they don’t have to play as many guessing games as before to try and figure out what’s wrong when he is in distress.
Lloyd’s son can’t be mobile on his own, but does roll as a way to express himself.
“He seems to be rolling a lot more,” Lloyd said. “He just seems to be overall happier and just laughing more. He seems to be enjoying life a lot better than what he was before. It makes us so happy because he has so many challenges anyway, it’s one less thing he has to struggle with.”
With the treatment protocol in place, WVU Medicine is poised to help other families like the Lloyds provide the same comfort and care to their children with similar needs.
“It’s surgeries and novel treatments like these that perfectly align with our mission to build healthier futures for children with neurological disorders in our community,” executive director of the WVU Medicine Children’s Neuroscience Center and vice chair of the WVU Rockefeller Neuroscience Institute, Dr. P. David Adelson, said. “It also maintains WVU Medicine Children’s Neuroscience Center of Excellence’s position at the forefront of pediatric neuro care in West Virginia and the Appalachia region.”
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