Stacey

When Daniel first experienced jerking in his arm, his neurologist suggested it could be dystonia, but rather than testing, she recommended a wait-and-see approach. The following year, when his foot began hooking in and his condition worsened, Daniel was tested and diagnosed with DYT1 dystonia.

To manage his symptoms, Daniel was treated with a combination of Botox and Artane. While the medications helped, Daniel's mom, Stacey, remembers learning that Daniel's prescription needs would increase over time and potentially affect his personality, energy, and memory. That's when she began exploring DBS.

In the process of learning more about Daniel's condition and treatment options, Stacey joined a Facebook support group, which turned out to be a bad fit. "There were videos of people with different problems than what my child had. It was really upsetting for me," Stacey said, so she began searching for other avenues of support and information.

In the course of her research, Stacey interviewed multiple surgeons and spoke with other moms about their experience with DBS and the decision-making process. The perspective of other parents helped Stacey weigh her options, and she still remembers the words of one mom she spoke with, whose son was older when he went through DBS. "She said, 'If I could give my child the childhood that I think you're about to give your son, I would do it in a heartbeat.'" Because Daniel was still in elementary school, Stacey decided the time was right to proceed with DBS, with the hope that his middle school and high school experience would be as neurotypical as possible.

When it came to making a major medical decision for her son, Stacey said she encouraged Daniel's input, but felt he was too young to be burdened with making the decision for himself. She said Daniel understood that it was his parents' job to take care of him and make the final decision, and that "if he needed to be upset with someone, it was better me than him."

"It was scary to make that decision for him," Stacey remembered. "You can make the decision and know it's right, but your heart and your body are going to protest the whole time. Mine did." Stacey said she lost sleep and tried to keep herself busy leading up to the surgery. On their way to the hospital, Daniel seemed calm, while Stacey said she was the one who was the most fearful. "I was definitely much more afraid than he was," Stacey recalled.

When it came to selecting a battery for the DBS device, they chose to go with a permanent (non-rechargeable) battery. Their decision was influenced by another child with dystonia who said, "I don't [want to] have to worry about my dystonia every day, and if I have to charge every night, I'm thinking about my dystonia every day." Because a permanent battery eventually requires replacement, Stacey felt that Daniel would still have the option to make a different decision for himself at a later time.  

Stacey was surprised with the surgery itself, and with how little time it took for Daniel to feel "back to normal." He stayed overnight in the hospital and was treated with Tylenol the next day for a headache, Stacey remembered. "And then we left, and he didn't need another painkiller after that," she said.

Stacey recalled that the device programming took place between four and six weeks after surgery, when Daniel's swelling had diminished. "That first programming meeting's not that fun for kids," she said, and she recommends choosing a neurologist who has experience working with children. She said it's also helpful to talk with other parents to learn more about how to prepare for the programming process.

When it came to symptomatic relief, Daniel's medical team estimated that DBS would resolve 50% to 80% of Daniel's symptoms, but Stacey said they hoped for as much as they could get. She said if he had to choose, Daniel "hoped it would resolve more in his leg than in his hand, because he felt he could get around the hand problem more easily than the leg problem." In the end, she said, "they both resolved a tremendous amount." Stacey said that while she still sees some signs of dystonia, she believes DBS helped resolve more than 80% of Daniel's symptoms.

While the surgery and recovery were a struggle, Stacey said Daniel is now going to school and functioning as well as other kids his age. Reflecting on the process, she said, "It's terrifying. At the end of the day, it was a great decision for my family, but I can't tell anyone else whether it's right or wrong for them."

Daniel no longer takes medication for dystonia, and the decision to use a permanent battery means they don't think about Daniel's condition every day. Stacey said, "Our family as a whole feels very back to normal."

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