What does the school nurse want to know about your child? A lot

If you’ve thought school nursing was just about taking temperatures and handing out bandages, a few hours at “Kids First” workshop at University of Texas School of Nursing proves you wrong pretty quickly.

During the course of two days last week, about 300 nurses from districts around Central Texas learned about the latest in managing diseases like ADHD, diabetes and mental health disorders, how to recognize child abuse, and how to recognize signs of stress and sleep deprivation in students. They also brushed up on skills such as catheterization, cleaning gastrostomy tubes, changing tracheal tubes and how to recognize abnormal heart and lung sounds and ear infections.

Kellee Flemmons and Molly Hinds practice catheterizing a mannequin. RICARDO B. BRAZZIELL / AMERICAN-STATESMAN

While school nurses cannot diagnose anything, they might be the first medical professional to see warning signs of life-threatening or chronic illnesses, and they also might be called on to help manage some of the care during the school day.

Some of the nurses who attended “Kids First” were regularly having to do things like catheterization or GT tubes because of the kids who are in their schools, others had never had a kid on their campus with those needs and welcomed the refresher lessons.

Deanne Hemmenway, CD Fulkes Middle School in Round Rock Independent School District, who regularly has done catheterization on a student, says it’s all about creating privacy and a trust factor, as it would be for any student she sees.

She’s been a school nurse for 20 years and knows that what comes into her office definitely depends on the time of year. There’s flu season, and allergy seasons, there’s also football season, volleyball season and track season. She also sees a lot of asthma and diabetes management come in as well as scrapes and falls. She’s called ambulances for football paralysis, severe asthma and falls down the staircase.

Sometimes the nurse’s office is where kids take a breather in the sanctuary of a quiet space and a nurse with an empathetic ear.

“Every day I have a handful of kids that don’t want to go to class,” Hemmenway says. Sometimes it’s a test they are trying to avoid. Other times there is more going on, like avoiding peers or family struggles.

Jacquelyn Kernan listens to the breath sounds and heartbeat of a mannequin. RICARDO B. BRAZZIELL / AMERICAN-STATESMAN

The nurses office, she says, is like a mini emergency room or clinic, in the variety of things that come in.

“You never know what is going to happen day to day,” says Joanne Johnson, a nurse at Ridgeview Middle School in Round Rock ISD.

What has changed is some of the things that are coming nurses’ offices weren’t decades ago. Mental health crises, particularly depression and anxiety, and problems with stress management come into the office more frequently, says Violet Filley, who has been a nurse for 23 years and works with sixth-graders to 12th-graders at Round Rock Opportunity Center.

How can parents best work with their school nurses? We asked some nurses at the training what information they’d like parents to be given them and how parents can be better partners in their child’s care.

RELATED: Teachers offer this advice for going back to school

Make sure your contact information is updated online (if your district has an online emergency contact form) and also by paper (if they don’t have the online form or the power goes out).

Make sure your child knows your phone number and the phone number of a few more people to call in an emergency. It’s not enough to have it in their phone. Their phone might not be charged at that moment.

Take the nurse’s call when she calls you and have a plan on what to do if your child needs to go home. Have a backup person who can pick up your child if you’re not available and make sure that your backup person is on the emergency contact form.

Know that a school nurse cannot diagnose. They can make a suggestion of what they think might be going on, but you have to take your child to a doctor to receive a diagnosis and treatment. The school nurse also is not your primary care clinic. However, sometimes school nurses might notice things that a teacher or parent has not, and often, they know what ick is going around.

Follow the 24-hour fever-free rule to return to school. Our nurses understand that parents have to work, but giving a kid Tylenol or Advil to get the fever down, doesn’t qualify as being 24-hours fever-free. It has to be 24-hours fever-free with no assistance. This is for your child’s safety as well as other children’s to stop the spread of disease. Remember last year’s flu season in which some districts had classrooms with very few kids in them? Let’s try to avoid that this year.

RELATED: Teachers want to know more about kids than parents share

For very young kids, put a clean pair of pants and underwear in their backpack and keep it there all year. Make sure your child and your child’s teacher knows where those clothes are.Nurses often have to send kids home or find clothes in the lost-and-found or try to clean up kids after an accident.

Share medical information with the nurse. They want to know if your child has a chronic illness, what medication your child is on and how much, what food or other allergies your child has and what to do if she has an attack, and what mental health diagnoses your child might have. If you think the teacher or the counselor has this information, don’t assume it’s filtering down to the nurse. It can be beneficial to sign a records sharing request for your child’s doctor’s office to send over medical information.

BACK TO SCHOOL: See our guide for tips, checklists and resources for parents.

Let the nurse know if there has been flu, strep or other communicable diseases. The school districts’ health departments are required to share numbers with the state and even the Centers for Disease Control and Prevention. Those numbers start with the school nurse and can help establish a pattern of where and how quickly a virus is moving.

Share the 504 plan or individualized education plan with the nurse. The teachers, counselors and administration might know it, but the nurse also should be informed, especially if it’s for behavior, physical health or mental health. They want to know what works with your child. They also want to know if the behavior that has caused your child to go to the nurse is normal for them. If your child regularly has panic attacks, that’s helpful for the nurse to be able to rule that out if your child comes in with shortness of breath.

Let the nurse know about a long-term medical condition that might mean homebound services will be needed. Sometimes the school nurse gets tasked in getting assignments for kids who can’t attend school.

Have the right paperwork for giving a child medication. If your child needs to take medicine while at school, most districts won’t let you just give the kid the pill bottle. There will be paperwork involved that comes from your doctor if it’s prescribed or from you if it’s an over-the-counter. Each district has its own set of guidelines. Ask your nurse what you need to provide and know that she can’t give your child anything if the paperwork is not filled out properly.

Realize that kids are different at school than at home. Sometimes kids will have stomachaches and headaches at school and be fine at home or the opposite can be true. It depends on how your child is wired. Recognize that what the nurse sees might not be the same symptoms you see regularly.

Understand that the nurse might not need to call you. Most districts have protocols for calling parents if there is a fever or head injury. If there’s an injury that seems to be fixed with a bandage or if the kid just needs a break, the nurse might not call you. Sometimes nurses who know families well have more information about whether or not you’re the kind of parent who wants a call at every visit to the nurse’s office or not. If you are that parent, let the nurse know that you’d like a call. Realize that the nurse’s time is valuable (usually there’s only one of her for hundreds or even thousands of children). She might not be able to call you that moment. A good reason that you might want a call is if you’re trying to establish a pattern to your child’s symptoms or if you’re trying out a new medication and need data if it’s working.

When in doubt, overshare information. Often the school nurse is the last to know, but the first to see your child in an emergency.

Mom shares the less-than-pretty truth about raising a child with autism in ‘Autism Uncensored’

Whitney Ellenby writes her truth about raising a son with autism in “Autism Uncensored: Pulling Back the Curtain.” ($19.95, Koehler Books) Not everyone is going to like it, and that’s just fine with her. In fact, she’s been reviled for writing what she’s written.

Ellenby was a lawyer in Washington, D.C., working in the Disability Rights Section of the Department of Justice, when she and her husband, Keith, became pregnant with Zack, who is now 17.

Whitney Ellenby, her husband Keith, son Zack and daughter Cassie.

Ellenby doesn’t pull any punches about the first five years of Zack’s life. When he was born, she had trouble connecting with him. He didn’t sleep well. He didn’t respond in ways she thought he should. His expressions were just flat. He never pointed for anything. Yet, how should she know this wasn’t normal? He was a first child.

She doesn’t hide her bitterness when the diagnosis came, and with it, a recommendation for 40 hours a week of therapy. This therapy came with a false hope that maybe he could be trained to alter his behavior so much that he appeared normal.

Whitney Ellenby wrote “Autism Uncensored: Pulling Back the Curtain.”

She dutifully brought her son to Applied Behavior Analysis therapy for months on end. Some behaviors would get better for a time period, or he would move from one behavior to another, but she became aware that it wasn’t working, that he hated the therapy, that it felt like punishment.

She writes that felt like she was losing herself. She looked at her work clothes and realized she was no longer that person who wore those. She felt like she was becoming more and more isolated. She couldn’t take Zack to public places because he would freak out. He started doing things like smearing his poop all over his room at night or eating non-food items. She writes “So this is my life. I am a well-educated woman. I am an accomplished civil rights attorney. I am a woman who spends hours every night on her hands and knees scraping feces off walls.”

The book, she says, was written for parents like her who are struggling and in pain. “When you decide to become a parent, it’s a leap of faith,” she says. You expect a normal baby. You don’t expect a Zack. “It’s not natural to have a total surrender of your identity,” she says. “Are you expected to be happy and thrilled or is there a natural amount of anger and bitterness?”

“Autism Uncensored: Pulling Back the Curtain,” by Whitney Ellenby.

She has experienced backlash after writing the book, she says, mainly from some other parents of children like Zack and from adults with autism who are high-functioning. “It’s just terrible to tell my truth,” she says, of the messages she has received. “I’m offended that your offended,” she says about her critics.

The way she felt, she says, is very normal. “It’s helpful to acknowledge it,” she says.

Ellenby spent five years trying to figure to figure out what went wrong and blaming herself as well as trying to find a way to make him more like a neurotypical kids. She wants parents to “shed the shame. Don’t waste time blaming themselves,” she says. “The numbers are huge and we don’t know why. We don’t know what’s causing it, but it isn’t anything we intentionally did.”

The book takes readers through those dreadfully frustrating years, but there are triumphs for sure. The highs were incredibly high, and the lows were incredibly low.

One of the things Ellenby did that experts discouraged her from doing was exposure therapy to the public spaces that Zack feared.

Ellenby created a routine of bringing Zack to places like the movie theater or a “Sesame Street Live” performance. Zack would have an all out tantrum and often the audience would be hostile to Ellenby until she started explaining to them what was about to happen. She would tell them that her son has autism and that he is afraid, but if they will just listen to him scream for a few minutes, she would talk to him and tell him what was going to happen, and suddenly he would realize that Elmo is on stage and that’s magical or that a movie is going to start and that’s pretty cool.

“Our kids can do so much more than they think they can do,” she says.

Through doing this, Ellenby made sure that Zack was able to go on the high slide at the water park, even though she was too chicken to follow him down, or go to a rock concert.

Her work with Zack also inspired her to create a nonprofit organization in the Washington, D.C., area to offer sensory-friendly events for families of children with autism.

Instead of chasing a cure, she’d like national organizations to build in more services for families, to advocate for more opportunities for people with autism. She’d like autism to be treated like any other disability, with accommodations in public places.

“Our kids are innocent travelers with a disability that makes the world hard to navigate,” she says. “If they are flapping, own it. Don’t feel ashamed of it. Get them out into the real world. Don’t keep them at home because you’re embarrassed. The only way to crystallize skills is to practice them in the real world.”

One of the things she wants to encourage families with a new autism diagnosis to do is to try lots of therapies, but to trust their gut. If something isn’t working or if their child plateaus, try something else.

She wishes she had done more with real world experiences and playdates when Zack was younger rather than him spending his time in 40 hours a week of therapy that didn’t work.

Zack started out in regular classes with some support, but then as the gulf between him and his classmates became wider and wider, it became painful for Ellenby to watch. She had to get over the idea that the experts had given her early on that Zack could “recover” from autism. It was about letting go of the fantasy and pretense. Once she accepted that he’s never going to “recover,” and “it was strangely liberating,” she says. “We acknowledged we had set the bar at an unrealistic place.”

For her, that means she looks to a future of Zack living with assistance and maybe one day having an entry-level job that works for him.

“This is who he is, this is who he’s meant to be,” she says. “Call the thing what it is and ask for what you need.”

Austin Girl Scout to get National Lifesaving Award for saving her father’s life

Sylvie Mider is a life-saver. Officially. The 11-year-old Barton Hills Elementary School fifth-grader will get the National Lifesaving Award Medal of Honor from Girl Scouts this spring for her cool head and quick thinking when she was camping with her father and brother at a Boy Scout camping trip at Camp Green Dickson in Gonzalez last April.

They had had a great day: Fishing, hiking, cooking, roasting s’mores. Then around 2:30 a.m. Sylvie was having trouble sleeping, as she often does when camping. She noticed that her father was moving around in a weird way. “I said, ‘Hey, Dad, are you OK?’ and he said he was fine,” but she didn’t like the way he was acting. She asked him what he was doing and he said he didn’t know, she remembers.

The Mider family is very grateful for Sylvie’s quick-thinking last April that saved her father’s life.

Sylvie knew something was wrong with her father and she sensed that his blood sugar was too low. David Mider is diabetic. and Sylvie had seen this happen to him before.

“If I didn’t notice he was sick or needed help, something terrible was going to happen,” Sylvie says when she remembered that night.

Sylvie remembered a lesson she learned at a Girl Scout troop meeting when a nurse came to teach first-aid. “People who panic never do well in bad situations.” She told herself: “I’m not going to panic. I’m going to keep my head,” she says.

She woke up her younger brother Rawley and they went to the tent next door to get adults Tommy and Jamie Perkins. They tried to give Mider a granola bar, but he wouldn’t eat it. Sylvie remembered that the pack leader was a doctor and she and another leader hopped into a car and went to get Dr. Matt Brimberry, who was in another part of the camp with the older boys.

Brimberry was able to find Mider’s glucose test strips to see how low his sugar was and glucose gel to get that into him to bring up his sugar levels.

Jamie Perkins writes in the nomination for the award: “Even as she heard us call 911 and go to get the doctor who was at our campground, she managed to maintain her composure and continued to help by providing information when it was needed. She could not have handled the situation better. Her bravery and quick action led to a successful outcome. Sylvie is a hero in my mind.”

Within a few minutes Mider was able to be coherent again, and they called off the EMS, which was 30 minutes away from the campground. “She was the catalyst to rectifying a serious situation,”wrote Rhoda Brimberry, wife of Matt Brimberry, in the application.

“I’m so proud of her for keeping her head and having the confidence to recognize what’s happening, taking responsibility and going to get the right people to help me out,” David Mider said.

Sylvie Mider holds a catch while fishing. At a camping trip in April, she recognized her father’s blood sugar was low and got him help.

Girl Scout Cookie season is coming

The cookies return Jan. 17-Feb. 25. This year, the cookies are $4 a box, $5 for gluten-free and will feature these flavors:  Thin Mints, Caramel deLites,
Peanut Butter Patties, Shortbread, Peanut Butter Sandwich, Lemonades, Thanks-A-Lot, Girl Scout S’mores, and gluten-free Trios.

Last year at Girl Scouts of Central Texas, 11,032 girls sold  2,494,144 total boxes.

Money raised goes back to the troop or local group of troops (31 percent); to programming (53 percent), and to fund development, management and administration (16 percent). Girls and troops use the funds to go to summer camp, pay for troop activities and adventures around the world.

Girls also donate boxes to send to people in the U.S. military around the world or to local nonprofit organizations.

 

Parents stay close to babies at St. David’s NICU with new web cameras

It started when Hurricane Harvey came to Texas. Infants in neonatal intensive care units across the state had to be evacuated to other hospitals, including 11 that ended up in Austin.

Not all family members could travel with the babies. Parents and grandparents and their babies were separated by the water that surrounded the Texas coast.

A NICVIEW webcam allows the Ward family to see their son Ethan when they can’t be with him. St. David’s Medical Center photos

Austin’s St. David’s Medical Center already was planning on installing NICVIEW web cameras in all of its neonatal beds last fall. The cameras would allow families to stay connected to their babies when they can’t be with them. When the hurricane happened, St. David’s sped up the installation and implementation process, says Rhonda Reed, NICU director.

“We are always looking for ways to be more family-centered, for anything we can do to be more family-supportive,” she says.

The Wards can watch Ethan on their phone from wherever they are. They also can share the webcam login with family members. St. David’s Medical Center

The hospital started with cameras at 21 beds but will be expanding to all 65 beds this year. The program will have St. David’s spending about $148,000 for the equipment, training and installation.

It isn’t just the parents whose babies were here because of the Hurricane that have benefited. Families who have members in the military, who have family members around the country or who don’t live in Austin also have found a connection with their babies through the webcams.

Before the cameras are activated on a bed, the baby’s primary family member is given some training. “This is not the first conversation to have on admission,” Reed says. Often cameras won’t be used until a baby is stable.

“If the baby is really critical, we’re not going to have the camera on,” Reed says. St. David’s wants the cameras to be a comfort to families, not cause extra worry.

Kate Ward and her husband Charley hold baby Ethan. When they can’t be with him, they watch a NICVIEW web cam in his bed at St. David’s Medical Center.

If it seems like the camera is causing to the family to have more anxiety, then the cameras are not a good fit for that family, Reed says.

When the hospital feels like it’s a good fit for both baby and the family, the parents are given are given a unique user name so they can decide who gets to view the camera. The hospital staff also explains that the camera will be in privacy mode when nurses and doctors are doing medical procedures. The screen will say “We are busy taking care of your baby. We’ll be back soon.”

St. David’s consulted with Baylor University Medical Center at Dallas about how it uses cameras in its NICU before turning the cameras on.

For Kate Ward, whose son Ethan was born at 34 weeks in early December by gestational carrier, she rushed to Austin from her home in Houston. With a 3-year-old and husband at home, there have been times where she has had to go back to Houston. With the cameras, she can still see Ethan from anywhere.

“I still have mom guilt for not being two places at one time,” she says, but when she is with her son Owen in Houston, she can see Ethan in Austin. Owen also can see what his little brother is doing by watching the webcam.

“It’s more than just helpful for us,” she says. Her grandmother, who is in a nursing home, can see her great-grandson. “She’s on it all day, every day,” Ward says.

Ward also uses it when she needs to pump breast milk to build that connection between her and her baby. “It’s an amazing tool for anyone in this unique situation,” she says. “When you can’t be with your newborn, it’s not an easy settling feeling. It gives a little comfort.”

Austin boy trying to raise $1 million for Batten disease treatment for sister

When his parents set out to raise $6 million in two years to fund a Food and Drug Administration clinical trial for a possible treatment for Batten disease, Garland Benson, 13, decided last March he was going to raise $1 million of that to help find a treatment for his sister, Christiane. He would do it, he decided, by asking 100,000 people to give $10.

Garland Benson is trying to raise $1 million for a treatment for Batten disease, which his sister Christiane has.

“One day I was like, this takes $6 million. That’s a lot. It’s too much for me to ask for. Let’s start at a million,” he says. “If I can raise $1 million, everyone else can come up with $5 million.”

Everyone else has raised $3.3 million since Sept. 2016 for Beyond Batten Disease Foundation’s Be Project. “They’ve been doing a pretty good job,” Garland says. He’s raised $169,000 for his Be a Hero project. People donate through his website page on BeyondBatten.org or by texting “Hero” to 501501.

He’s had donations from as far away as France. Friends and family have shared it with their friends and family. He and his friends at Hyde Park Middle School have formed a group called Brothers for Batten, which raises money by doing different things including an upcoming garage sale.

“We found a treatment,” he says. “We just need to fund it. It will help a lot. Maybe after that, we could try to find a cure. We haven’t gotten that far yet.”

His sister, Garland says, really loves skiing and playing golf. She loves cooking and painting and Harry Potter, both the books and the movies. She loves to walk her dogs.

“Her personality is so determined,” mother Charlotte Benson says. “She’s so strong-willed. She does not quit trying.”

Christiane was 5 when she was diagnosed 10 years ago. Batten disease is a rare genetic disease in which both parents are carriers of a genetic mutation. It’s a disease in which the lipopigments, which are made of fat and protein, build up in the brain and the person doesn’t have the ability to clear the cells of them. It causes kids to become clumsy, and then become blind, have seizures and become developmental delayed. In Christiane’s type, the life expectancy is sometime in late teens, early 20s.

She is now almost blind and has seizures.

Her parents were told there was nothing they could do when she was diagnosed. There were no treatments. They were told to go home and make their child comfortable.
“This is one of those rare orphan diseases that falls into the abyss,” father Craig Benson says. There wasn’t the funding or attention for research to be done.

The Bensons weren’t going to accept that. “We’ve got to do something to change this,” Charlotte Benson said.

At the time of her diagnosis, Craig Benson was the CEO of Rules Based Medicine, a life science diagnostic company. He had connections to the pharmaceutical industry and to researchers.

They founded the nonprofit Beyond Batten Disease Foundation and hired a chief science officer. They began raising money to start doing research into Batten disease and partnered with other foundations in similar diseases such as Parkinson’s and Alzheimer’s that had more funding and more publicity. Because, Batten disease didn’t have a lot of dollars or energy going toward it, they had to start from the beginning.

“We found ourselves as the global quarterbacks,” Craig Benson says. “We had to fund the tools to be able to allow research.”

They found neurologist Dr. Huda Zoghbi at Texas Children’s Hospital, who knew some Italian researchers, who had  promising treatment possibilities. Beyond Batten funded bringing those researchers to Houston to work with Zoghbi.

The proposed treatment is two components: one an oral medicine and the other a food additive that is given in an IV injection. It’s not a cure, but they believe it could delay the progression.

The Garlands have accepted that their daughter may not live beyond her 20s. They believe, though, that they “were the right people at the right time” to create a change in the treatment for Batten. Charlotte Benson remembers a fellow Batten parent coming up to Craig Benson at a conference after they first formed the foundation. “She said, ‘We’ve been praying for you. We’ve been praying that someone would come along that could do something to help this disease,'” Charlotte Benson says.

One of those right people, is son Garland. “I’m so glad for him that he like us can feel like he’s doing something,” Charlotte Benson says. “He’s just naturally a sweet kid.”

For Garland, he wants to raise $1 million and believes he can. After that, he plans on joining the NBA, or opening up the next Cabela’s, or investing in the oil and gas industry, or possibly become an architect. He’s got time. He just turned 13.

7-year-old Salado boy donates four Hatchimals to McClane Children’s Hospital

R.J. Arnold gives a Hatchimal to Jazmine Henderson at McLane Children's Hospital. Baylor Scott & White
R.J. Arnold gives a Hatchimal to Jazmine Henderson at McLane Children’s Hospital. Baylor Scott & White

Like many kids, 7-year-old R.J. Arnold and his little sister Lauren, 4, wanted a Hatchimal for Christmas. His mother Geneva Arnold wanted to make that happen. So, before the Christmas shopping season even began, Geneva Arnold was looking for Hatchimals.

She had gone to stores. She was even looking on eBay. R.J. saw his mother looking on eBay and told her, “Look, there’s a ton of them right there.” Ahh, but he didn’t understand the prices that were coming with the normally $80 toy.

R.J. Arnold and his father Russ get Hatchimal gifts ready to give to children at McLane Children's Hospital. Baylor Scott & White
R.J. Arnold and his father Russ get Hatchimal gifts ready to give to children at McLane Children’s Hospital. Baylor Scott & White

R.J. sees it this way: “For some reason, the black market is not being nice on Christmas. It’s not having the Christmas spirit. It’s making higher prices ,which is wrong.” Yes, 7-year-old R.J. knows about the black market. 

Geneva Arnold, though, was determined to get her children Hatchimals, and not at the eBay prices. The Salado mom went

into Walmart every morning. She left her name with some of the supervisors to call her if a new shipment came in. She was able to get the two she was looking for, and then she was able to get four more on Black Friday.

R.J. Arnold donated Hatchimals to four kids at McLane Children's Hospital in Temple. Baylor Scott & White
R.J. Arnold donated Hatchimals to four kids at McLane Children’s Hospital in Temple. Baylor Scott & White

R.J. helped her decide that instead of selling them and turning around and making a profit like other people were doing on eBay, they should donate them to the Baylor Scott & White McClane’s Children’s Hospital in Temple.

“It’s just not fair that some kids don’t get as much toys as I have,” he said. “It would be nice if they can get something. They won’t have a good Christmas if they are stuck in the hospital.”

On Friday, they did just that. They donated four Hatchimals to children in the hospital.

R.J. likes Hatchimal because you can teach them things. He’s already told his mom that if Santa brings him one, he plans on teaching it how to clean.

If Santa isn’t bring your child a Hatchimal, what should you do? Find our list of ideas on how to turn this heartache into a teachable moment.