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Two brothers, One diagnosis - Part 2

With the help of the Nephrology team at Children’s, Maria Alias and her husband came up with a treatment plan that would allow their two sons with kidney failure, Najib and Safie, to maintain as regular lives as possible.

They elected for both of them to do peritoneal dialysis at home every night while they slept instead of coming to Children’s three times a week for hemodialysis treatments. That allowed them to minimize school absences by only having to visit Children’s for monthly lab workups.

Educators from the Nephrology department – which treats more pediatric dialysis patients than any other hospital in North Texas – then trained them how to operate the home dialysis machine during an intensive three-week session.

“They’re a fantastic family,” the boys’ nephrologist, Dr. Katherine Twombley, said. “They’ve done everything we’ve asked of them to take care of their sons.”

Kidney transplant could be in Najib’s and Safie’s future. One benefit of them being seen at Children’s is that the staff who works with them in the Nephrology department is in constant collaboration with the team in the Transplant department.

“All effort is made to make the transition from dialysis to kidney transplant as seamless as possible,” Dr. Mouin Seikaly, a nephrologist and the medical director of renal transplant at Children’s, said. “The Nephrology and Transplant teams collaborate to make sure there is no disruption in the process for patients or their families.”

In the meantime, Najib is bouncing around everywhere acting like he’s Spiderman, and Safie is playing video games like any other third grader. Yet, it’s likely that the only way they will be able to continue to live with such vitality in the long run is to receive new kidneys.

April is National Donate Life Month, and Children’s is encouraging everyone who is able to register to be an organ donor by registering at http://donatelife.net/. It’s free, only takes about a minute to do and saves lives.

“The need is real when you consider the facts,” Stephen Pottoore, administrative director of Nephrology, said. “Someone is added to the transplant waiting list every 10 minutes. On average, 18 people die each day waiting for a transplant because of the shortage of donated organs.”

Two brothers, One Diagnosis - Part 1

Maria Alias had no idea what nephrophthisis meant when she brought her two sons, Safie and Najib, from Malaysia to America in 2005.

But she learned very quickly in the summer of 2011. The boys’ father noticed that Najib, then 6, had uncontrollable tremors in his hands one morning in July when Maria was out of town. By the time she returned, Najib had been given the strange-sounding diagnosis at Children’s. It meant his kidneys were failing him.

She didn’t even have time to process Najib’s diagnosis when 8-year-old Safie developed a continuous nosebleed in August. She and her husband knew by then that nephrophthisis was genetic.

So, instead of taking Safie to the closest emergency room to their Kaufman home, they brought him directly to Children’s, assuming he had the same disease as his brother. And their assumption was right.

The boy’s nephrologist at Children’s, Dr. Katherine Twombley, had never seen anything like it. Out of the hundreds of patients she had treated for various kidney ailments, she’d never had two brothers with nephrophthisis. And the fact that both presented within a month of each other made their situation even more unusual – and challenging for their mother.

“It was very difficult to deal with,” Maria said. “But I didn’t have a choice.”

Come back to our blog tomorrow morning to learn how the Children’s team is helping Maria take care of her two boys.

What to look for in Episode 7

Let's be honest. Every episode ending in a cliffhanger makes us all anxious.

We want to know how these patients who we've come to know and care for turn out. Moreover, we want to know that those patients turn out well. Well, we'll get our wish this Saturday on the series finale.

How has Rylynn been since receiving her heart transplant (hint: that's her with her parents in the picture above)? What does Taylor's nose look like following reconstructive surgery? Is baby Dakayta healthy after surgery to repair her spina bifida? What about the Kirby twins? How are their parents handling one being at the hospital while they have to be with the other one at home?

And what about that nice neurosurgeon with the long hair? What's his home life like?

This episode will answer all of those questions. We'll also give you a chance to see all of the physicians from Season 1 again.

So, please watch at 6:30 p.m. this Saturday on WFAA. In my humble and unbiased opinion, I think it's our best episode yet.

Teens smoke popular drug and damage hearts

You may have seen the recent news story on CBS about K2 sending more local teens to emergency rooms.

Watching your teen experiment with his hairstyle or wardrobe is one thing. A harmful drug disguised as incense is another. Teens treated in The Heart Center at Children's are dealing with cardiac issues from dabbling in K2 or "spice," a chemically-enhanced marijuana substitute. The drug has been sold in head shops and online, marketed as a harmless blend of herbs and spices that's inexpensive. The biggest selling point for student athletes is that screening tests won't pick up this drug.

Dr. Colin Kane, pediatric cardiologist at Children's, had never heard of K2 until teens came into the Emergency Department with unexplainable chest pain. In fact, medical literature about K2 doesn't exist so, after his experience, Dr. Kane worked with toxicology experts at UT Southwestern Medical Center to publish his findings. Since K2 is undetectable, there is no way for doctors to know how much of the drug is in the body or the long-term effects.

Only after some prodding did the teens admit to using K2. Unfortunately one of the boys, a high school football player, has permanent heart damage and will be on the sidelines.

Tips for keeping your teen out of danger:

• Keep communication lines open - ask not only about K2 but also drugs in general
  


• Watch for tracings of an herb-like substance in your teen's bedroom or backpack



• Educate your teen about the real dangers of smoking K2



• Be on the lookout for side effects of K2 use including paranoia and a soaring heart rate
  

Watch Dr. Kane explain why he's worried about widespread use among high school students and athletes:

What to look for in Episode 6

This Saturday at 6:30 p.m. on WFAA, you'll get to see some of the hardest and sweetest issues that parents of Children's patients face. Episode 6 of Children's Med Dallas picks up the stories of two families in the NICU who were introduced in Episode 5.

You'll get to see how newborn Dakayta fares following surgery to treat her spina bifida. And you'll get to see how her parents process the bittersweet emotions of having a new baby who is facing significant health obstacles.

The other parents in the episode also have to deal with mixed emotions. Their 23-week-old twins, Kennedy and Audrey - both born 17 weeks early, are progressing at different rates. One will be discharged while one will have to stay behind a little longer.

Spoiler alert: both cases will warrant some Kleenexes, but both will also inspire you.

The episode isn't all serious, though. We'll also take you away from the hospital with one of our physicians who was willing to dress up like Dumbledore at his daughter's Harry Potter-themed surprise birthday party.

A delayed flu season in North Texas

It's common knowledge in the medical community that viruses like the flu mutate and adapt to maneuver around the latest immunizations. In fact, that's the reason we have to get flu shots every year - because the strains of the flu we were immunized against in prior years have evolved and require us to develop new vaccines for them.

But even as ingenious as mutation is, it may not be as tricky as what the flu did over the past several months in North Texas. You see, the typical peak of the flu season is in January and February here. But not this year. North Texas had an extremely mild amount of flu cases in the first couple of months of 2012.

That lulled most of us into thinking that we were just going to have a flu-less year. However, as you'll learn from our infectious disease expert Dr. Jeffrey Kahn in the WFAA news clip below, the flu just faked us out. There has been a significant increase in flu cases over the last several weeks, which implies that we're just now entering the throes of "flu season."

So, if you haven't had your child vaccinated against the flu yet, it's still a good idea.

A Family Affair - St. Baldrick's

Editor’s note: Andy Lautzenheiser and his mom Kelly, an oncology nurse at Children’s, shave their heads every year to raise money for the St. Baldrick’s Foundation, a nonprofit, volunteer charity that funds research to find cures to childhood cancer. We asked Andy to share with us why the event is so important to him and why he chooses to shave his head every year.

Hello All. My name is Andy and I wanted to share my story with St. Baldrick’s. You can raise money by having people donate money to your cause and at the end of the event you have your head shaved as a thanks to everyone. Right now I am 15 years old and this March will be my 4th year to shave my head for St. Baldrick's.

I first did it when I was in 6th grade when I heard that my mom was going to shave her head for St. Baldrick’s. My mom is a nurse practitioner at Children’s and takes care of kids with cancer. I thought it was a great idea, so I asked my mom if I could shave my head with her and she said I could if I really wanted to. So, for the next few months I grew out my hair until it was the day of the event. My goal was to raise $500 and at the end I raised $925! The event where you shave your head was amazing. It is a whole festivity where everyone that gets their head shaved goes on a stage and there is a ton of cheering. You tell everyone about yourself and then you get your head shaved while everyone cheers. Then you stay and watch everyone else get there head shaved. You get a t-shirt and pictures and then you get to go home with a great summer cut!

I was kind of nervous about what people would say when I went to school. The next Monday when I was walking into school I could tell that everyone was staring at me, and I was thinking that it was actually kind of cool. Through the day I got a bunch of comments like "did you lose a bet?" or "you have cancer!" and they were kind of getting annoying but I didn't really care about what people thought about me and after I told them that I shaved my head to raise money to find a cure for kids cancer everyone went pretty quiet about their comments after that.

It feels great having no hair because you feel a lot lighter and your head is cooler. It was so much fun that I have been shaving my head every year since. One year there was a kid at my school that had cancer, I asked him to shave my head for St. Baldrick’s that year which was really fun. I love shaving my head for this good cause and I will continue to do this every year.    

What to look for in Episode 5

Episode 5 of Children’s Med Dallas focuses on the youngest and smallest patients at Children’s – the ones who occupy our neonatal intensive care unit or NICU. You’ll get to see three families who entrust their babies’ lives to our staff, believing that the “Level 3C” NICU accreditation means the most delicate and complex cases can be figured out and rescued here.

Drs. Rashmin Savani and James Moore, the medical directors of the NICU, will be shown caring for the patients and counseling their parents. Viewers will also get to see Dr. Savani interact with his own family at home, including teaching his teenage son how to drive.

The first patient shown will be newborn Dakayta, who was introduced at the end of Episode 4. Dakayta was born with spina bifida and needs immediate surgery to enclose her spine. Dr. Dale Swift, a Children’s neurosurgeon, is introduced in Episode 5 as he’s called in to correct Dakayta’s condition.

Three new patients will also be introduced: 9-month-old Zoe and 23-week-old twins Kennedy and Audrey. Zoe is experiencing mysterious episodes of breathlessness. Kennedy and Audrey came to Children’s from Longview after being born 17 weeks early at 15 ounces and 19 ounces respectively.

So, please watch at 6:30 p.m. this Saturday, March 31, on WFAA Channel 8 or afterward on our Facebook page to see how the Children’s staff tries to rescue these babies who won’t survive without medical intervention.

'Child Life is a calling, not a job'

In honor of Child Life Month, we are highlighting three of our child life specialists - Ashley Brady, Jill Bringhurst and Ruthie Davis. Read below to find out why they pursued child life as a career and more about their roles.

What is Child Life and how did you discover the profession?

Ashley Brady: Child life specialists work in many areas of the hospital from the Emergency Department to the ICU. I discovered the child life profession in my second year of college when I was looking for a career that combined the medical field and working with children. I graduated from college and did my child life internship, which is a 15-week unpaid clinical experience. During my internship, I fell in love with the field of child life and truly feel that being a child life specialist is a calling rather than a job.

Jill Bringhurst: A child life specialist will prepare a patient for surgery or an invasive procedure, provide support during imaging or medical testing and debrief those involved in a traumatic event. The role of a child life specialist in a pediatric setting is a key component to the psychosocial support families receive at Children's.

Ruthie Davis: Our job is broad, ranging from community outreach, school re-integration, new diagnosis teaching on an age appropriate level, medical play and normative play, playrooms to encourage normal growth and development, sibling support and education, procedural preparation and support, bereavement care and legacy building activities for both patients and siblings, and developmental assessments.

Why is Child Life important in a hospital setting?

JB: Child Life is an entire discipline focused solely on the psychosocial needs of pediatric patients. At Children's, we have many people caring for the medical needs of a patient, but the child life specialist can address the developmental, emotional and social needs of the patient.

AB: We understand that children are not little adults. Children of every age have specific needs. Hospitalized children need to be involved in play which promotes normalization of a sometimes scary environment as well as way to express feelings. Teens have their own space in the hospital where they can hang out with kids their age.

How does Child Life make a difference in the child's care?

AB: We use our expertise in child development to tailor our interventions to help the children cope. Studies show when children know what to expect in the medical setting, they do better. I have had many experiences in the surgery unit where I walk into a room and the child is hiding in the bed, scared and crying. When I begin to blow bubbles, the child slowly comes out from under the covers. The child then makes eye contact with mom to make sure I am a safe person and engages in the bubble play which helps me build rapport with him. Once the child is comfortable with me, I am able to talk with him about things that might be scary or hard, such as the upcoming surgery. We also work with the entire family. When siblings come to visit their brother or sister in the ICU, we educate the siblings about what to expect. When a child is newly diagnosed with a chronic illness, we explain the complexities of the diagnosis using kid friendly language and teaching dolls.

RD: We give the child tools they can use in the future, control when most of their control has been lost or taken away, and predictability with a routine or structure. We also provide toys and activities in the playroom which can help make a scary or unfamiliar place fun, give the child age appropriate information and knowledge about their disease or condition, and take away their fear of coming back to the hospital.

Why did you decide to pursue child life as a career?

JB: I was fascinated by the hospital and medical field and also drawn to working with children and making things better for them.

RD: I didn't want to be a doctor or nurse but still wanted to work with children in the hospital setting, making their experience better.

AB: It is a job that challenges me in many ways but is so rewarding. I feel very blessed to have a job that I love, and that every day I have an opportunity to directly impact patients and their families.