From personal experience, a desire to help

Andrew Pearson knows what it’s like to be a teen with a “weird disease.” When he was 14, he was diagnosed with ulcerative colitis (UC), a chronic disease that can cause abdominal cramping, nausea, bloody diarrhea, fatigue and aching joints. He had to have his colon removed to help alleviate the symptoms.

Andrew recovered well from the surgery and learned to live with the disease as he grew up. Now 14 years after his last surgery, he works in the audiovisual department at Children’s Medical Center at Legacy. Last year, he started telling people around the hospital that he would like to provide advice to kids who went through the same thing he did.

Gastroenterologist Dr. Michael Russo took Andrew up on his offer.

Andrew meets Mason
Dr. Russo had a 14-year-old UC patient named Mason Rackley. Like Andrew, Mason underwent multiple unsuccessful therapies for his disease while his condition worsened. Like Andrew, to get any relief from his symptoms, he needed to have his colon removed.

Knowing the similarities in the two cases, Dr. Russo asked Andrew if he would speak with Mason and his family. Andrew was happy to oblige. He went to see the family after Mason was hospitalized for a severe UC flare-up.

“I said, ‘Fire away. Ask me anything.’ I told them my story and that everything would be fine, just that now was a difficult time. I told them about how I learned to live with my disease.”

Penny Rackley, Mason’s mom, says Andrew was the perfect person to speak to about what Mason’s life would be like if he had his colon removed.

“We could ask him anything – the most intimate and yet the most important questions for Mason,” she said. “Andrew was very free with that information. He is someone that Mason could totally trust and still is.”

Thanks in large part to Andrew’s visit, the Rackleys decided to go ahead with the surgery. Mason had his colon removed in April.

Andrew keeps giving
Andrew recently made Mason the honoree for his Crohn’s and Colitis Foundation fundraising team, which will run a half-marathon in Las Vegas Dec. 5. He hired a limousine to take Mason to the fundraiser kick-off party on Aug. 21. Mason, who Andrew describes as having a “zest for life,” got a big kick out of the limo, and is now telling all his friends about his experience.

Today, Mason, a straight “A” student even through his surgery and recuperation, is back at school and playing football.

“We’re just taking it day-to-day,” says his mom.

One mom's discovery of the perfect child friendly event

Dawn Strauss explains why she and her family are going to run, relay and raise money for Children's at the Red Balloon Run & Relay on October 9.

"After almost six years of being a mother, I find the majority of child friendly activities to be a tad painful. The zoo? Ugh. There's nothing like pushing a stroller full of hot and tired kids looking at some sleeping animals. I've tried restaurants with arcade games and rides. But I leave those places having blown my diet and the kids' college funds. I've even tried puppet shows. I am always searching for activities that my children and I can both enjoy.

The Red Balloon Run & Relay seems to fit the bill. In addition to walking and running events, the Red Balloon Run & Relay will have a DJ and kid-friendly activities like face painting, a bubble zone, a photo booth and tic-tac-toe and Wii games. Members of the Dallas Stars Street Team and the Texas Legends Basketball team will be there. And families can buy tickets for breakfast, snacks and lunch, with proceeds benefiting the Legacy chapter of the Women's Auxiliary to Children's.

You can sign up to run or walk, and then you start your fundraising. All proceeds go to Children's, and you can give to a specific department at the hospital. Even my 5-year-old is getting into this. She's in the midst of training to run the 1K fun run. Most importantly, my kids will have a great time while they work to help others.

The heart behind it all

If these activities aren't enticing enough, then come out October 9 and meet the children who are benefiting from this event. My favorite beneficiary of the event is my 4-year-old daughter, Shayna. She is literally the heart behind Team Shayna. One hundred percent of the proceeds raised by our team will go to The Heart Center at Children's.

So why am I working so hard to fundraise for The Heart Center?

I could state the obvious and rave about the incredible care Shayna has received. Shayna suffers from Mitral Valve Regurgitation and Left Coronary Artery Atresia (she has no left coronary). I could tell you how Dr. Forbess successfully operated on my then 15-month-old, who was in congestive heart failure. Or I could talk about the people in the cardiac ICU who were able to revive Shayna when she had an irregular heartbeat after surgery. I could tell you how, although more surgery is in our near future, Shayna is exceeding everyone's expectations. She is happy and so full of life. You would never know that she's a heart patient. All this makes The Heart Center great. I want to tell you what makes it extraordinary.

The little things that make a difference
You see, The Heart Center has brought light to the darkest place of my life. The people and the resources available to Shayna and our family have taken the unthinkable and made this journey bearable. What is it about The Heart Center that the average person can't see?

It's Chris, Shayna's ICU nurse, who would hold her hand and talk to her when I would step out for a meal.

It's the child life specialist who works on Saturdays that prepared my then 3-year-old to see her sister in the ICU.

It's Barry, the echo tech, who would talk to Shayna about the Barbie movie she was watching during her echocardiogram.

It's Jelly, the nurse, who told Shayna that she was lucky that she got to wear her heart monitor to preschool because she could show all of her friends the music box that was recording the music in her heart.

It's Dr. Day, Shayna's cardiologist, who makes her check-ups seem more like a visit with an old friend.

These are the people who motivate me to give back. So, I ask you to come out and join us for the Red Balloon Run & Relay. Support Team Shayna and help us thank The Heart Center for not only saving my daughter's life, but for bringing so much joy into lives which could potentially have been filled with so much pain."

Back to school

Brianna Lamar is one of many 14-year-olds in North Texas who began their first week of high school on Monday. When I spoke with her a few weeks ago, she didn't seem worried at all about the adjustment.

"I'm looking forward to it," she said. "It's going to be a little different, because I'm going to be doing a lot more. I'm going to have to balance out a way to be on the debate team, student council and band. And all of my classes except for two are going to be advanced placement."

She wasn't worried about fitting in. Or harder classes. Or growing up. She wasn't worried about any of the typical things high school freshmen worry about.

What did worry Briana? Getting a scratch in PE. She's HIV positive and has been since birth.

But there is a lot more to her than that, as you can tell by the excerpts from our conversation below. A full story on Briana will run in the September issue of Children's Connect.

"I went to Camp Hope this summer. It's a camp full of kids who have HIV. This was my seventh year to go. It's pretty neat to see a bunch of kids just like me and make friends with them. We do outdoor stuff like canoeing, kayaking, riding bikes and going down a zip line. It's a lot of fun. I'm sad, because next year will be my last year to be a camper."

"I don't think about HIV all of the time, but there are times when I do. I wonder what stage it's in. I wonder how big it's gotten. I wonder if my medicines are shrinking it any."

"I call the people who don't have HIV 'The Normals.' It takes them days and weeks to get sick. But for me, sickness can advance within a matter of minutes or hours. And if it lasts for days to weeks, that's when it really gets a lot worse for me. That's why I have to take my medicine every day."

"There are two people that I consider my closest friends. You know, you tell somebody and they usually tell someone else. But I told them (about my condition), and they don't tell anyone else unless they ask me first. They keep it to themselves, and they don't threaten to tell other people if we get in an argument or anything. That's what I really like about them. They're the two most loyal friends I've had."

"When I turn 16, I'll have to get a job. I would love to intern at a veterinarian's office. I'd just like to work with animals in any way possible."

"I've already decided where I want to go to college: Texas A&M. They have a great veterinary program. For my undergrad degree, instead of doing it in 4 years, I'm going to do it in 2. And for my grad degree, instead of doing it in 4 years, I'm going to finish it in 2 also. And then I'll have a 2-year internship with a vet. And then I'll set up an animal sanctuary somewhere in the country in Montana. But not too far from the city."

Children’s at Legacy helps ease the pain

Cheryl Haver’s evening started out like any other: “Get off work, pick up the kids, go home and start dinner.” But the evening of July 20 turned out differently. Her youngest daughter, Mickenleigh, 4, (“Mickey” or my little monkey”) ended up with a gash in her eyebrow that needed stitches. Even though they were in Grand Prairie at the time, Ms. Haver immediately drove Mickey and her other daughter, Crimson Rose, to Children’s Medical Center at Legacy in Plano. She felt confident in the care Mickey would receive because Legacy is where she takes Crimson Rose, age 9, for severe asthma attacks. Here are excerpts from Ms. Haver’s description of that night:

“As I was in the kitchen, I heard my daughters running around and jumping on the bed. Then I heard a crash and a scream. Mickenleigh had fallen off the bed and hit her head on the night stand drawer that was not closed fully. She came out of the bedroom with her hand over her eye. I had never been so scared. She took her hand off and my heart fell when all I saw was blood. It was all over her face. I finally got her calm enough to get it cleaned off. She had hit her eyebrow and cut it open.”

Sensory integration disorder complicates care
Mickenleigh has a sensory integration disorder and she doesn’t like anyone to touch her face. But she let the doctors and nurses at Children’s at Legacy help her. Ms. Haver says:

“Since Mickey has sensory integration disorder I knew that a regular Emergency Room would probably send her over the edge. We got in the room [at Children's at Legacy] and did not even get to sit down before the nurse came in. She was really great about talking to Mickenleigh and not just to me. The doctor then came in and looked and determined she would need stitches.

Me, being mom, was only thinking my little blonde-haired, blue-eyed baby would be walking around with these black strings over her eyes, and then I would have to go through all this again to get them removed. One of her sensory dislikes is people touching her face. Also when she gets scared or nervous, I have to hold her super tight to calm her down but no one else can restrain her. I voiced all these concerns to the doctor trying to figure out how we are going to keep her still enough to get stitches in her eyebrows. He reassured me that they were going to use dissolvable stitches and they would only do the procedures when Mickenleigh was comfortable. That put me a little more at ease.”

Ms. Haver says her family received great care from every level of professionals at the Emergency Room.

“A woman from the Child Life department came in and explained that she was there just for Mickenleigh and would sit with Mickenleigh and me through the whole procedure. She would also answer any questions that Mickenleigh might have. She brought in coloring books, crayons, and a doctor kit for the girls to play with. She just sat and talked to Mickenleigh and answered all her questions no matter how silly they were. She walked Mickenleigh through step by step what was going to happen. She really helped put Mickenleigh at ease.

The nurse came back in to put a numbing gel on Mickenleigh's eyebrow and was just very patient and understanding and did everything on Mickenleigh’s own time. Since this was night time, I knew we would be there during shift change. Usually in regular ER’s, people come and go and never tell you who they are. But at Children’s that was different. The first doctor came back in with another doctor and explained to Mickenleigh that he was getting off work and was wondering if it was OK that he left and his friend take over. He was willing to stay if that is what Mickenleigh wanted. They talked to Mickenleigh and discussed everything with her just like she was an adult and not a 4-year-old scared little girl. She told the doctor it was OK for him to go home.

When it was finally time to put the stitches in, my stomach was turning. Even though it made it harder on himself, the doctor let me hold her in my lap instead of trying to hold her lying down in the bed. He kept reassuring Mickenleigh and made sure it was OK for him to start stitching. Everyone explained to Mickenleigh step by step how they were going to put in the stitches.

The "toy lady" brought in movies and a few toys to try to distract Mickenleigh from what was happening. Of course that was hard since they were working on her eye. Of course she started screaming as soon as the doctor started, but he was very calming and just kept talking to her. I did not realize that in order to use the stitches that dissolved it would be harder on him since those are colored blonde and she has blonde eyebrows. I don't know how he did it but he managed to get the stitches in and Mickenleigh was OK. She wiped the tears away and the doctor explained to her how to take care of her wound. The girls then got Popsicles and juice.”

Ms. Haver likes the fact that her family got follow-up care from Children’s.

“Children's even called the next day just to check on Mickenleigh and make sure everything was still OK. They are so loving and caring and truly do their jobs because they love children. You can see it in their eyes and feel it when they talk to you. I will drive out of my way just to take my babies to Children's. I am so glad that Children's Legacy is there. They are the best.”

“All I wanted to be was normal”

Meredith Moore of Dallas has spent the better part of her life fighting anorexia. As the 18-year-old faces new challenges — heading off for college, leaving her parents’ home, growing up — she talks about what it’s like, how far she’s come, and what scares her about moving on.

All I wanted was to be "normal." But I was far from even the outskirts of normal at the height of my illness. Instead of spending Friday nights delighting in cake batter ice cream with girlfriends, whom I once thought of as my best buddies, I bonded with my self-diminishing disease instead.

I went to yoga for all the wrong reasons: to ogle my prickly spine and raggedy spindle-shank bones in the surrounding mirrors of the studio. At the apogee of my anorexic affair, I thought my objective in life was to make my gaunt figure everlasting, to transform weight loss into a staunch conviction, in order to find self worth and purpose.

My parents saw things differently. Two weeks after I was admitted to Children’s Medical Center, my views started to shift. Was I seriously swallowing antipsychotics and in the same unit as bipolar schizophrenics? The inpatient unit was very strict: Even my fluids, both in and out, were monitored. That’s because we anorexics are pretty creative in finding ways to hide the ways we avoid eating. I began to realize that I couldn't have it both ways in life — keeping both my disease and all the privileges of my impending adulthood.

I had lost my parents' trust. Due to my disease, I couldn't hike the ruins of Angkor Wat with my mom (a trip we'd planned for months and had to cancel) because of my brittle bones. I couldn't bike and bond with my dad because my distortive dieting and dilated aorta threatened our favorite tradition. In short, I couldn't make my life last and play the role of victim to my inner destructive voice. The doctors, nurses and therapists at Children's led me, firmly and inevitably, toward health.

Individual, family, and group therapy showed me ways to "normalize" my behavior so I'd make “could” last as opposed to “couldn't.” Together at Children’s, we found ways for my zealous drive to once be the skinniest and sickest victim to transform into a person who valued straight A's and real accomplishments instead. This transformation wasn't easy; I was utterly miserable most of high school.

Finally, last summer, I reached an epiphany: What if all I have to make last is self-acceptance? I realized that normalcy is variegated hues instead of being stark black and white. I decided to trust my intuition to shape my identity rather than conventional wisdom. My eating disorder began to abate.

Nonetheless, the struggle continues to be a daily duel. Some summers are worse than others. Stress, such as my upcoming departure for college, triggers lapses into old, unhealthy habits. Like every therapist said, this sickness must be kicked in the toosh every day. I fall back on the advice and insights I received as a patient at Children's when I struggle. I can still hear them saying: "Shedding pounds is in turn going to impede your inspirations and aspirations. Malnourished, you can’t think coherently."

Whenever I shilly-shally over whether to weigh myself or count calories or hover on the edge of deep depression, I remember what Courtney, my favorite milieu therapist (MT), said to me: “How do you want to be remembered? What kind of person do you want to be?” and I feel stronger, better, because I’m more determined to inspire others with my natural talents like photography and writing rather than thinness.

Like me, many girls and, yes, boys, need to take greater care in accepting themselves. And while diet and exercise – physical well-being – are important, they are merely specks among the greater aspects of our values, like faith, hope and love.

Beauty by Hollywood’s standards does not bequeath entitlement. Yet so many men and women misconceive six-pack abs, luscious legs, and hair that shimmies and swerves in the sunlight as empowerment. It can be hard to choose to be fearless over conforming to popular culture. To show how far I’d come, I didn’t wear a drop of makeup my last month of high school and rather than straightening my strands, I sported a coffee-colored beret. The experience gave me confidence. I couldn't have made such a strong choice without the help of the staff at Children’s.

After struggling with her disease for years, specialists at Children’s Medical Center treated Meredith for anorexia in the comprehensive pediatric eating disorders program before her freshman year of high school. This fall, she is headed off to school at Barnard College in New York. She follows the advice given her by her treatment team at Children’s to take recovery one day at a time.

Madison’s recovery

Full recovery for Madison Birdwell may be years away, but, on July 21, she saw her surgeon, Dr. Andrew Trussler, as an outpatient at Children’s Medical Center at Legacy in Plano. Her healing is progressing. “He said I was ahead on the healing schedule.”

Madison knows she may have other surgeries but the biggest part is over and she’ll not need any major surgeries. A year from now, there might be a laser surgery to make the skin grafts on her leg “look more like normal skin.” She’s also facing a long process of physical therapy. But she has her leg and she will not be in pain, Dr. Trussler said, and for that she is thankful.

The Oklahoma teen says of her ordeal: “Mentally, that was kind of hard.” But she remembers these encouraging words from the plastic surgeon: “Dr. Trussler joked that as long as I didn’t want to be an Olympic high jumper, that I would be fine. That’s about the only thing I wouldn’t be able to do.”

Degloving accidents
Dr. Trussler said degloving accidents like Madison’s, where the skin is stripped off the extremity, are fairly common. Children’s Medical Center sees about one a month.

The injury is very severe and often also involves the stripping of muscle. Madison’s muscles were intact, thus saving her from having to have another type of muscle flap surgery. Dr. Trussler said of Madison’s surgery: “It was a good save.”

Madison requires immediate surgery

Doctors in Oklahoma had said Madison Birdwell was going to lose her leg.

Enter Dr. Andrew Trussler, a plastic surgeon on the medical staff at Children’s Medical Center. He succeeded in taking a muscle flap called the soleus from the calf, rotating it upward and wrapping it around Madison’s damaged leg. When he visited Madison’s parents, Susan and Glendon Birdwell, after the surgery, Madison says he told them: “’That was easy.’” She adds: “My parents were looking at him in awe.”

Four days later, Dr. Trussler performed a second surgery to put skin grafts on Madison’s leg. The grafts were taken from the tops of her thighs. A third surgery required the removal of a Wound Vac device that had applied negative pressure to Madison’s injuries, thus continuing her healing process.

Psychological help for Madison
All along the arduous and painful way, Madison was helped by Gretchen Noble, Ph.D., a psychology post-doctoral fellow at Children’s, who used a variety of mental techniques, including deep breathing and guided imagery, to help Madison control her pain and adjust to the fact that her leg would never look the same as before the accident. This fall, Noble will become a full-time pain management psychologist providing inpatient consultations and outpatient evaluation and follow-up.

Madison’s experience with Shaolin Kung Fu training helped her to focus mentally on Dr. Noble’s guided imagery, especially during her wound dressing changes and the first time she saw her leg exposed. “She helped me prepare for that. She helped me with my psychological reasoning,” says Madison. “My leg is attached to me. It’s my leg and I’m going to have to get used to it.”

Read more about Madison Friday.

One moment changes Madison's life

“I got hit by a tank.” Madison Birdwell saw the huge car, a Mercury Grand Marquis, run the red light right and come directly at her before hitting her motorcycle. The 15-year-old from Guthrie, Okla., remains clear-headed about the accident: “I remember everything.”

Her injuries were gruesome. The accident stripped the skin on her lower left leg down to the muscles and tendons. Her leg bones were broken in six places. Her tibia bone was exposed.

She was Medi flighted to an Oklahoma City adult hospital trauma unit where surgeons set her bones. But after two weeks there, her improvement was minimal and she was told that she was 24 hours away from losing her leg. “I was prepared for the fact,” Madison says. She was transported that night on a jet to Children’s Medical Center and a hospital bed in Dallas.

Read more of Madison's story Wednesday.

Why doctors in Colombia will be more prepared for flu season

Have you ever talked to someone and your conversation with them kept replaying in your head? That happened to me last week. I met a doctor from Bogota, Colombia who was at Children's with his team. After talking about his visit, Dr. Cassalett told me that 30 kids in Bogota died from the flu last year because he had nothing else to offer them. That knowing how to operate machines like the ones at our hospital could have saved at least half of their tiny patients.

His words were hard to grasp. Thirty died? That amounts to a whole classroom of kids. I instantly thought of Anthony Vo, a perfectly healthy kid who was hit hard with the flu last year. Without our specialized team that Dr. Cassalett was talking about, this 4-year-old wouldn't be alive.

That's why Dr. Cassalett is here. To make sure more kids have outcomes like Anthony. Day in and day out this group has been training on complex machines called ECMO with our experts in the pediatric ICU.

Dr. Cassalett told me he plans to start a program in Bogota by October, just in time for flu season.

Check out a WFAA segment that features the team training with mannequin simulators.

If I’d only known then what I know now…

AAP says 'Herculean' cleaning efforts not needed to rid home of head lice

Three years ago, a phone conversation with my best friend began the way many horrible talks do.

“I have terrible news,” she told me.

Now in our 40s, my best friend and I have shared many things in our relationship. We have known each other since we were 6, and now our daughters are good friends, too. I was fully prepared for her to tell me that someone close to us had died.

Instead, she told me something that was nearly as devastating to me at the moment: Her daughter had lice, and she thought my daughter might, too, since the two had spent the night at her house the day before.

My friend confessed that after discovering the lice late the previous night, she’d been up all night scrubbing, washing, drying things on high heat and sealing off pillows and stuffed animals in garbage bags.

My only reply: “Why in the world didn’t you call me sooner?” It was 10 a.m. at this point, and I had lost precious hours in the battle.

The necessities
I immediately checked my kids. Two of three had head lice. That’s when I morphed into Psycho Lice Mom. The fear of shaving my 2-week-old’s precious brown curls drove me to obsess about evicting the bugs loitering on my children’s heads (don’t worry — she’s the one who didn’t have lice).

A frantic trip to the drug store netted $100 in products — shampoo, special nit combs, lice-killing sprays and even a $25 electric bug-zapping comb. I made everyone in the house use the shampoo – against the advice of the product directions – multiple times in a two-week period just to be sure. I checked everyone’s hair several times a day — OK, hourly – and “zapped” when necessary.

But I couldn’t stop there. I threw away throw pillows and sheets, spent hundreds of dollars to dry-clean bedding (professionally laundering king-size quilts and comforters is expensive) and put toys and stuffed animals in bags (some of which remain unopened in my garage to this day).

And here’s the clincher: Ultimately, after spraying lice-killing spray on our sofa – where one of my daughter’s was sitting when I made the gruesome discovery – I couldn’t stand the thought of the bugs or the chemicals. So, I got rid of the sofa, too.

Advice from the experts
However, according to new advice from the American Academy of Pediatrics, my cleaning frenzy to rid our home of head lice, now known as the “2007 lice incident,” was completely unnecessary. I’m sharing the AAP’s report and my story in hopes of sparing you the pain and suffering that I went through in the panic of ignorance.

Of course, we survived the ordeal, and thanks to the AAP, I’ll know better next time… though recounting the incident still makes my skin crawl.