A cutting-edge procedure for epilepsy at Seattle Children’s, known as responsive neurostimulation (RNS), is offering hope and seizure reduction relief to some patients who are still looking for solutions after exploring other treatment options.
With RNS, a battery-powered device is placed in a patient’s skull to reduce seizures. A neurosurgeon connects thin wires from the device to one or two parts of the brain where a child’s seizures start. When the device senses that a seizure may be starting, it sends a signal to stop it.
Seattle Children’s is one of only a handful of centers across the country to offer this device and the only one in the northwestern U.S. to use this device on a child.
“As the epileptologist, we can program the device to interrupt a seizure if we’re in the right spot with this device,” said Dr. Stephanie Randle, a child neurologist and epileptologist at Seattle Children’s.
Randle says RNS has emerged as an effective option to have if medicines are not working and if epilepsy surgery, where a surgeon takes out part of the brain, is not a good option.
“It is really an option for any child with epilepsy that is resistant to medication – [they] could be a candidate for this device,” said Dr. Jason Hauptman, pediatric neurosurgeon at Seattle Children’s.
Hauptman said the RNS procedure, which Seattle Children’s has been performing for around two years, has opened up a whole new avenue of treatment for kids that, previously, had very limited treatment options.
Previously, treatment options were limited to medication, vagus nerve stimulation, dietary therapy and surgical resection.
Another benefit, Hauptman says, is that the device works better as time goes on, because it collects data daily that an epileptologist is able to review and make decisions on over time. This allows providers to tweak the device to its best ability.
So far, Hauptman says that data shows that around 60-70% of patients treated nationwide with RNS have experienced a significant reduction in their seizure burden with this device.
In addition to seizure reductions, Randle says that, in some cases, patients are able to reduce the amount of medicine they take.
Rebecca Racenet, whose 16-year-old daughter Caitlin has been fighting seizures since she was one, says her family is looking for both seizure relief and a reduction of medications as a result of the RNS procedure.
Her family makes periodic trips to Seattle Children’s from Alaska for Caitlin’s care.
Caitlin had the procedure earlier this summer and just had the device turned on this August.
However, Rebecca says the RNS device has already given them one thing: hope.
“I think hope just matters so much,” said Rebecca. “We were really starting to lose hope for a while. And so, just having this hope that things may get better for her and we’re doing something, I think, really makes a big difference for families.”
Caitlin has a genetic disorder called tuberous sclerosis complex, which causes noncancerous tumors to grow in different parts of the body. Randle says this is the reason Caitlin has epilepsy.
However, Randle says RNS offers a lot of promise for the community of patients with tuberous sclerosis complex.
Rebecca says her family has previously tried everything they can to reduce seizures. Caitlin has had a number of complex surgeries, takes a range of medications every day, and has tried the keto diet and natural remedies – but nothing has worked as a long-term solution.
“To be able to target specific areas of the brain. We’re also learning the pattern of seizures that she’s having – it’s pretty amazing,” said Rebecca. “To be able to program it, to learn her brain and learn her seizures – this could potentially be a really, really big deal in helping.”
The hope with RNS is that the new technology will prevent doctors from needing to perform more surgeries, which come with complex risks.
“We don’t want to continue having to put her (Caitlin) through surgery, and with every surgery, we’re risking causing damage in other areas of her life, whether it’s function, or impairment or her memory – that has been a big concern to us,” said Rebecca.
Hauptman says that another benefit of the RNS device is that it gives patients a sense that they are actively participating in their epilepsy care, because patients and their families use a device to upload computer data for doctors to review. Rebecca says this is absolutely the case with Caitlin.
“She is 100% motivated to get rid of these seizures,” said Rebecca. “Every night when I put the wand on her head, she holds perfectly still, because she knows what we’re doing.”
Hauptman says that ultimately, the providers’ objective is to make kids feel like they are not burdened with disease.
“[We want to help] allow them to go to school – some get driver’s licenses, some get jobs, sometimes greater feelings of self-worth. And there’s a lot of data that we can show you that these interventions help all those things.”
Currently, Seattle Children’s runs a monthly neuromodulation clinic, where device experts provide education to families and providers on the device. Randle says that there are plans to expand the clinic to more days and that ultimately they want to collaborate with providers in Washington, Alaska, Montana and Idaho to help guide device management so that a patient may not only have to be seen in Seattle.