It Takes a Village

Of Jess and Patrick Vander Zanden’s three children, Josie has always been the easiest to put to bed. When it’s bedtime, she’d just go to her room, crawl into bed and go to sleep. A week or two after her third birthday, however, she was acting a little out of sorts. Something was just a bit off. She wanted her dad to lay in bed by her. Like any good father, Patrick agreed to do so.

An hour and fifteen minutes later, Patrick came downstairs carrying Josie. “I don’t know what’s wrong with her,” he said.

Josie’s fists were clenched, her arms were pulled in tight to her chest and she was shaking in a strange start-stop-start manner. She didn’t respond to Jess and Patrick when they talked to her. And her eyes were in a deep, odd stare.

It hasn’t been easy, and it’s a deliberate state of mind, but Jess and Patrick have made the adjustment.

“Now we focus on what she needs right now. And right now, the focus is strengthening her left side and working on her fine motor skills so she can do things like she should, like every other five-year-old,” said Jess.

“The fine and gross motor skills are the main deficits. And all that affects her day to day,” said Patrick. “Going to the bathroom, zipping up your jacket, wiping your nose. Everything that you and I take for granted is work for Josie. But cognitively, she tests high for her age. She’s very sharp.”

Treatment

After the results came back, the Vander Zandens began the arduous task of finding medications that would not only stop the seizures, but not have side effects as well.

By the time they got Josie to the emergency room that night, she was fine. She was tired, but she was talking and her appearance was back to normal. They took her to her doctor the next day and described what had occurred the night before. He told them Josie had a seizure and referred them to a neurologist.

A few days later, Josie had another seizure. Then another. And they kept occurring.

The neurologist ordered an EEG. When the results came back, they learned Josie had an abnormal brainwave pattern.

“The weird thing is, that brainwave pattern doesn’t cause seizures in everyone,” Jess said. “You might have that too and never have a seizure.”

As a result of the seizures, Josie experiences a persistent weakness in her left side. She also has deficits with her fine motor skills and speech. She’s improved enough over the last two years that she no longer needs physical therapy. But Josie is still receiving occupational and speech therapy.

The Prognosis

Many children outgrow their seizures as they get older. Others may continue to have them into adulthood. The fact of the matter is it varies from child to child.

“Unfortunately, we don’t know,” said Jess. “We’ve talked to Josie’s neurologist and asked when do you think we’ll know? What’s going to happen? His response was, ‘We’re in a long-term relationship here. Take a little step back and we’ll look at things in six-month blocks.’ It took a while, but I’m finally able to think that way. I used to get into all the ‘what ifs.’ What if she’s in middle school and she’s still having seizures? What if she wants to play softball? How is that going to work? What if she does … whatever? What if?”

By Jon Race

“It was a world we weren’t really ready for. That first med she was on, literally within a couple days she was like a different kid. She became super defiant, super aggressive. Plus, she kept having seizures,” Jess said. Jess and Patrick called Josie’s doctor and explained the situation. “Right away we tried a different drug,” said Jess. “That helped manage the seizures temporarily. We had a little bit of a gap. But then we started noticing other stuff going on with her. It’s like she had no awareness of her body. Things like fine motor delays, where picking things up was almost like she didn’t have strength in her hands.”

The Vander Zandens began to address all the other challenges Josie was having along with the seizures. They received a referral to the CP Center in Green Bay for an evaluation for physical and occupational therapy. Josie also began speech therapy at Bellin Health.

“The seizures are now in a place where they are well managed. But there’s still a lot she is working on,” said Jess.

Changing Health Insurance

About a year after Josie’s first seizure, Patrick changed jobs. They lived in De Pere and he was commuting to Oshkosh every day.

“I was getting home and would get to see the kids for about 30 minutes before they went to bed. It just wasn’t working.”

Normally, a job change isn’t all that problematic. You make the change, and you move on. But Jess and Patrick had a lot to be concerned about. They were currently getting insurance through Patrick’s employer. A new job meant they would have a new health plan.

“Josie was four. It was kind of during the worst time, so we were really scared to switch insurance,” Jess said.

Jess was working at Network Health at the time and wanted to get some information before Patrick officially changed jobs. She reached out to a Network Health pharmacist and asked some questions about Josie’s medications. She learned that the profile of drugs Josie was on would cost them about $1,200 a month under Network Health’s insurance.

But the pharmacists looked into alternatives and found an equivalent generic form of Josie’s medication. The downside was that it was in pill form. Josie’s current medication was liquid. But if four-year-old Josie was okay swallowing a pill, they might be able to make the switch.

“The pharmacist even worked out the equivalent dosage and everything. I showed the doctor what we had and he agreed if Josie would swallow the pill that we could switch to the generic. Well, Josie had no issues with it, so we switched. We’re talking $5 a month versus $1,200. That’s a huge difference,” Jess said.

“And that was all because of the pharmacists,” said Patrick. “We wouldn’t have known any of that. We wouldn’t have been able to do that. And the crazy thing is, those pharmacists do stuff like that every day for all Network Health members. Part of their job is helping people save money.”

“That’s when we knew we were going to be okay with Network Health,” said Jess.

Josie has two sisters, Kiara (who prefers to go by Kiki) is nine and Reagan is two. Their involvement cannot be underestimated.

“Josie and Reagan are starting to have a little bit more of a bond. Because Josie was struggling with so many things, they almost needed the same kind of care. But now Josie is acting more like a big sister, which has been fun to watch. And Kiki is really motherly and caring. She’s always helping out with little things. Early on we had to keep a log by Josie’s bedside. Kiki was ‘If anything happens, I’ll write it down.’ She was kind of like a third adult in the room,” Jess explained. But it’s more than just family.

CP Center

The CP Center in Green Bay is where Josie went for physical therapy and is currently going for occupational therapy. The Center is a non-profit organization offering therapy and life skills services and programming for physical, cognitive, developmental and sensory conditions.

“The therapists at the CP Center have been amazing,” Jess added. “Josie loves, loves being there. She just turned five in April and I feel like now we’re finally seeing the gains from all this work she’s been putting in. She’s coming back to who she is.”

“It’s crazy how good they have been,” Patrick said. “If I win the PowerBall, I’m calling up the CP Center and asking them what they need. You need another wing? Okay. Whatever you want. They are just so amazing.”

The Doctors

The Vander Zandens consider themselves lucky when it comes to the doctors they have worked with.

“Josie’s neurologist is known for seizure management. He’s so good at educating and breaking it down from a parent perspective. Yet he’s really relatable to Josie. He does a great job with her,” Jess said.

Josie’s personal doctor at the Prevea Allouez Health Center in Green Bay received similar praise. “We go through him for everything, Jess said. “Working with him has been such a good experience. He was the one who referred us to Josie’s neurologist. And he helped us find an orthopedic doctor to help with Josie’s limp. But it all comes back to him and we work together.”

Josie is also still receiving speech therapy through Bellin Health. “It’s hard to find a pediatric speech therapist,” Jess said. “There just aren’t that many around. But we were lucky enough to find a great one at Bellin Health.”

“We’ve gotten really good care. The CP Center and Prevea doctors. And Bellin for her speech therapy. They are all in-network for us. And they have been amazing,” Jess said.

De Pere Community Center

Josie has participated in numerous programs at the De Pere Community Center over the last year or so. Everything from dance to sports to art classes.

The Support System

The list of people and organizations the Vander Zandens have relied on for support is a long one. And they know they wouldn’t be where they are without that support.

“It’s definitely a ‘it takes a village’ type of thing. And we are very fortunate in that regard. So many friends and family,” said Patrick.

“It’s hard to find a place that you feel comfortable dropping off a child like Josie because you don’t know what to expect,” Jess said. “But the De Pere Community Center is something different. They know about Josie and her story and they welcome her. All parts of her. If she’s tired or not having a great day, you’re not going to see the best side of her. But they’ve wrapped their arms around her and accepted her. It’s been really good for Josie.”

Froedtert Mail Order

It may sound a bit odd to reference a mail order prescription service as part of a support system, but for Jess and Patrick, it truly is.

“We do Froedtert mail order,” Jess said. “It’s a benefit we have access to through Network Health’s insurance. It’s something the Network Health pharmacist alerted us to when they counseled us on her drug set up.”

“Prior to that we would have to try to work through chain pharmacies, which was challenging because most don’t have Josie’s meds readily available, posing risks of not getting them on time. The switch to the mail order pharmacy eliminated long waits at the pharmacy and confusion regarding which drugs need to, or can be, filled and on what timeline. The mail order pharmacist will literally call us on our cell phones. You just don’t get that experience typically. We have what we need when we need it. It’s been a relief for us,” Jess explained.

“And UPS delivers it right to our door,” Patrick said. “The mail order prescription service was a huge change for us when we switched to Network Health.”

Network Health

Beyond just the pharmacists, Jess and Patrick are appreciative for the service they’ve received from Network Health.

Lessons Learned

Despite their situation and everything they’ve been through, the Vander Zandens remain positive.

“We are grateful,” Jess said. “Things could always be worse. She’s still in therapy working on these deficits. She continues to close the gap but it’s a slow road.”

“In the beginning it felt like a low simmering stress in my gut. All the time. You’re always worried because you don’t know how it’s going to turn out. But in the end, I think it has affected me positively. It makes you realize you have a lot of strengths. That our family had it in us to deal with this scary thing,” said Patrick.

“From a parent perspective, it really has made us pause and focus on what’s important,” Jess added. “It’s easy to get into a flow of life and just go. But this has really caused us to pause and think about what’s most important for all three of our girls and what they need to be successful.”

Patrick added, “It’s also made me realize that there are a lot of people in the world, in our community, who want to do good and want to help others. Everyone we’ve dealt with at Network Health, the people at the CP Center and the De Pere Community Center, all the doctors … there are a lot of people out there who really have a passion to help.”

“We’ve had no problems with billing,” Jess said. “Everything makes sense and if I have a question, I get answers. With our previous plan, that just wasn’t the case.”

“And, we’ve had things denied, but we got a call from the nurse explaining what it was and they walked us through it. Our previous insurance we just got the denial. They didn’t explain it. And that just made an already stressful situation worse. With everything we’ve gone through, when it comes to Network Health, I’ve never felt not heard or not listened to,” said Jess.

“It’s been a long journey. And Network Health has been a big part of it,” Patrick added.

Required Information for Members

There are several organizations that exist to help improve the quality of health care across the United States, including the National Committee for Quality Assurance (NCQA), the Wisconsin Office of the Commissioner of Insurance (OCI) and the Centers for Medicare & Medicaid Services (CMS). They use a variety of performance measurement tools and regulations to help ensure consumers are protected and receive quality health care services. These organizations also require health insurance companies to provide information to their members on these specific topics.

• Access to Network Health Care Management Employees and Services

• Ensuring You Receive the Service You Deserve

• Falls/Osteoporosis

• T he Importance of Exchanging Information

• Keep Yourself Safe from Medicare Fraud

• K now Your Member Rights and Responsibilities

• Network Health’s Focus on Quality

• Submitting a Claim for Reimbursement

• W hat is Population Health Management?

You can find a downloadable PDF of this information at networkhealth.com/required-info. If you do not have access to the internet and need a hard copy of the NCQA information, please call our member experience team at the number on the back of your ID card.