Skylar Jones, 15, is the first patient to undergo CAR T-cell therapy at Cook Children’s. She was just 9 years old in 2014 when she was diagnosed with B-ALL. Despite undergoing intense chemotherapy, Skylar’s cancer relapsed in 2017 and again in March 2021.

CAR T-cell therapy was approved by the Food and Drug Administration (FDA) for use in refractory and relapsed B-ALL in 2017. Cook Children’s began offering the treatment for those who qualify in November 2020. For Skylar, the timing was perfect and meant she would not have to travel outside of Fort Worth and away from her long-time physicians at Cook Children’s to receive this potentially life-saving treatment.

“Had she relapsed six months earlier, we would have had to go out of town for this,” said Deby Jones, Skylar’s mother. “So for Cook Children’s to have this now and for families to not have to move to get this treatment for their kid, I mean, there’s tons of families that will benefit from this.”

Skylar’s necessary but difficult chemotherapy treatments wreaked havoc on her body. Mouth sores, headaches and rashes were common side effects. An infection required part of her lung to be removed, and the impact of chemotherapy on her bones and joints made it impossible for her to play basketball, her favorite sport.

When Skylar relapsed a second time in March, it was clear that chemotherapy was no longer the most effective course of treatment in her case. Her cancer required a different approach. This made her a good candidate for CAR T-cell therapy.

“CAR T-cell therapy is a treatment option for children with refractory B-ALL, meaning they haven’t responded to initial treatment, or kids whose cancer has relapsed,” said Holly Pacenta, M.D., a hematologist/oncologist with Cook Children’s Cellular Immunotherapy Program.

In this cell-based immunotherapy, the patient’s own T-cells, which help the body fight infection, are harvested from their blood and sent to a lab where they are reprogrammed into CAR T-cells to target their leukemia. The CAR T-cells are then reintroduced into the patient’s blood stream. From start to reinfusion, the process takes about four weeks.

The therapy begins with a procedure called leukapheresis where the healthy T-cells are removed from the patient’s blood. This takes about four to six hours and the patient is able to go home from the hospital the same day. Once the lab receives the cells, it takes a few weeks to reprogram them into CAR T-cells. Just before the CAR T-cells are reintroduced, the patient undergoes a short round of chemotherapy to lower the number of other T-cells in the body. This gives the CAR T-cells a better chance to activate inside the body to kill cancer cells. After chemotherapy, the patient returns to the hospital to be infused with their new CAR T-cells and is able to go home the same day.

Unlike chemotherapy and radiation, which affects the fast growing cells in the body, this treatment is a targeted approach that kills only the B-cells. The duration of treatment is shorter, too.

“B-ALL cells have specific markers that aren’t located on many other cells in the body, which is the part about it that’s unique,” Dr. Pacenta said. “The reason this has been so successful is because we are able to target one marker on leukemia cells to fight the disease.”

The remission rate after CAR T-cell therapy is 80%.

“Every patient is different, but we know that, in some children, this can be a long-term cure, meaning they don’t need to receive any additional treatment,” Dr. Pacenta said. “Some research studies have found that the CAR T-cells will persist in a patient’s body for as long as three and a half years, but it’s likely that the cells will be around for much longer.”

For Skylar, CAR T-cell therapy was as different from chemotherapy as night and day. She was fortunate to not experience any of the side effects associated with the therapy.

The side effects of CAR T-cell therapy include allergic reaction during and immediately following the infusion. In the weeks after, patients are closely monitored for neurotoxicity, as well as cytokine release syndrome, where the immune system becomes overactive due to the multiplying CAR T-cells releasing large amounts of chemicals called cytokines into the blood. These side effects can be very severe, with some patients requiring admission to the intensive care unit.

Now three months post infusion and Skylar's cancer is in remission. She will undergo more testing at six months post infusion, which will give her a better idea of her potential for long-term remission.

As for the possible impact of this type of cell-based immunotherapy on cancer, doctors are hopeful it could one day replace traditional treatments.

“I think there may be a day in the future where cellular therapy does replace chemotherapy, surgery and radiation for people with cancer,” Dr. Pacenta said. “But I think we are still a ways off. This therapy has been very successful initially but we still have a lot of work to do.”

“I loved the game,” Dr. Bowen-Jallow recalled. “I would also play with my doctor kit, and listen to my parents' heartbeats with the stethoscope and take their temperature with my tiny thermometer.”

Just one month into her career at Cook Children’s, Dr. Bowen-Jallow was recently recognized by the American Pediatric Surgical Association (APSA) as the 9th Black female pediatric surgeon in the U.S.

"When the Benjy Brooks committee informed me I’d be recognized for my contributions, I was on cloud nine," Dr. Bowen-Jallow recalled. "When APSA released the recognition to their social media account, it was a wonderful day for everyone to see all of my hard work."

Dr. Benjy Brooks was the first female pediatric surgeon from Texas. Dr. Bowen-Jallow identifies with Brooks' roots and was grateful to receive recognition in her honor. She says credits the recognition to hard work and perseverance.

Hard Work

Dr. Bowen-Jallow attained her undergraduate degree from Texas A&M University and earned a medical degree from the University of Texas Medical Branch.

"I wanted to be a cardiothoracic surgeon and then I desired to be a neurosurgeon," Dr. Bowen-Jallow remembered. "Right before I decided to go into pediatric surgery, I wanted to be a plastic surgeon."

She said becoming a pediatric surgeon was an accident, but it was the best accident that could've happened. She also believes it was worth enduring all 17 years of higher education.

"I'd committed to doing plastic surgery and was lining up interviews," she said. "As I signed up for my acting internship (AI), I wanted to do general surgery and was informed there were no more spots available. My only option was pediatric surgery, and within three days I'd changed my career path. I knew pediatric surgery was what I wanted to do for the rest of my life."

"Working with children is instant gratification," Dr. Bowen-Jallow explained. "If you perform a good operation, perfect your technique and pay attention to detail. Children will recover well."

Dr. Bowen-Jallow also expresses her love for children and admires their resiliency. She enjoys seeing children recover and giving parents peace of mind after an operation.

"It fuels my soul, knowing I’m doing what I’ve been called to do," she said.

Dr. Bowen-Jallow performs surgery on all things from the neck to the pelvis, excluding heart surgery. She also focuses on gastrointestinal surgery and trauma. In her practice, she enjoys researching pediatric health disparities and pediatric obesity. 

Breaking Barriers

Dr. Bowen is proud of her recent recognition. However, she believes it is essential to have minority representation in medicine; being the 9th Black female surgeon is still minimal. 

"There is a sense of sadness knowing how many others like me could have attained more, without implicit bias in the world; and if minority students weren’t underrepresented in medical school," she explained.

Dr. Bowen-Jallow agrees culturally things have changed significantly, but there is still work to be done to get everyone on an equitable playing field. She recalls growing up, seeing very few women surgeons, and not ever seeing a Black pediatric surgeon before residency.

"It is important to have diversity within the medical system, so people know anything you put your mind to is attainable,” Dr. Bowen-Jallow said.

Dr. Bowen-Jallow advises young professionals who want to follow in her footsteps. 

"You have to know where you come from and where you're going. You must set yourself up for success," Dr. Bowen-Jallow explains.

However, for minorities, she believes the advice has to differ because of the adversities they face.

"There is implicit bias. It's not fair and it's not right," Dr. Bowen-Jallow said. "You always have to do better, know more, and perform better so you can stand out among your peers."

Dr. Bowen-Jallow recalls a time in high school where she was written off and told she would never be successful. She remembers that moment being the push she needed any time she wanted to give up.

"My calculus teacher told me I would never be a physician because I wasn't good at math," Dr. Bowen-Jallow said. "That still sticks with me today. Once I got into medical school, I wrote that teacher a note and dropped it off at the school so he could realize the power of his words."

Outside of the Operating Room

When Dr. Bowen-Jallow isn't in the operating room, she enjoys spending time with her husband of 14 years and her children, ages 3 and 5. She credits her husband for standing by her side through numerous years of education and being the family's backbone.

"I couldn't do any of this without the help of my husband," she said. "He has always supported my dreams and supports the late nights and early mornings on the job. My career wouldn't be possible without him."

The family recently relocated to Prosper, Texas, where Dr. Bowen-Jallow will practice full-time once the new Cook Children's Medical Center - Prosper opens next fall.

To decompress, she and her family enjoy running, biking, and other outdoor activities.

"Having young children of my own, I understand the trust and faith that my patients' families place in me every day," Dr. Bowen-Jallow expressed. "Knowing this, I adhere to the golden rule by treating every family the way I would want my own family treated." 

Operation is no longer a game for Dr. Bowen-Jallow. Changing the lives of children, one surgery at a time, is now her reality.

Rebecca Benson had a feeling the weather predictions would be wrong when she woke up Thursday, Feb. 11. As she suspected, no winter storm arrived overnight to cancel school for her two children. Like any other day, she quietly put on her scrubs while her family slept and left her North Fort Worth home in the dark. A diligent nurse at Cook Children’s Medical Center for six years, Rebecca didn’t want to be late for her 7 a.m. shift.

As she traveled down Interstate 35’s expressway, everything seemed normal – until it wasn’t.

“The roads were completely dry. There was not even a mist on my windshield, absolutely nothing,” said Rebecca. “All the bridges I went over were perfectly fine until I came across the big Trinity River bridge.”

Driving down the highway for nearly 20 minutes, she had no reason to suspect what lay ahead – black ice, and a crumpled mess of metal and people. Approaching a curve at the top of a hill, Rebecca’s car began to swerve. As she confidently corrected the wheel, she noticed shining taillights getting closer. It was a pileup that would ultimately involve more than 130 vehicles, killing six people.

“I look in front of me and see all of the carnage from the accident. There's absolutely nothing I can do,” she said. “It’s the expressway. There's barriers on both sides of you. You can’t go to a shoulder. You can't do anything.”

Knowing she was about to crash, she aimed her red SUV in between two semi-trucks.

“I put my foot on the brake, said a prayer, and I literally thought to myself, ‘I could very possibly die in two seconds,” she said.

Rebecca tried to relax her body to avoid broken bones and readied herself for impact. She hit the trucks so hard, her ponytail holder came out of her hair.

“I got through that and thought, ‘Okay, I'm alive. I'm not severely injured. And then I looked in my rearview mirror and see all of these lights coming right at me,” she said.

Rebecca says that’s when she realized she wasn’t out of the woods. The chances of her being injured or worse by the oncoming traffic were high. But thanks to her quick thinking before the crash, she had positioned her vehicle in what she calls “God’s triangle,” because the trucks stuck out past her SUV, protecting her.

“Everything that hit behind me, the trucks took the impact from that. Every time another semi would hit, you would hear and feel the car move. It was so unbelievably terrifying,” she said. “I've seen it on videos, but to actually be there, waiting to see if something even worse is going to happen was awful.”

Rebecca stayed in her SUV until she stopped hearing crashes. All four doors were blocked by the trucks, so she waited until someone opened the back hatch of her vehicle. She crawled out and surveyed the situation in shock.

“I'm like, ‘Okay, I'm a nurse. I got this. Who can I help? What can I do?’” Rebecca explained. “But Fort Worth Fire Department was working a wreck on the non-express side of 35 (when the pileup began) so they were already there. There was a car behind me that they were working on with the Jaws of Life to try to help somebody. Everyone from Fort Worth Fire was amazing.”

After the crash, Rebecca called her husband who was ready to come get her. She also had a text message from her coworker, Ed, warning her not to take I-35 because traffic was backed up. Knowing Ed was stuck nearby, she decided to find him and hitch a ride to work.

“I was like, ‘All right, I'm gonna hop the barrier and I'm walking your way because there's nothing I can do. But I can at least get in your nice warm car and be safe that way,” she said. “I walked up I-35 in the ice. It was the weirdest thing to be walking on a highway.”

When she found Ed and his girlfriend, Kim, she told them to take her to work. Rebecca explained that she could have gone to the reunification center set up by first responders and waited for her husband, but she knew that drive would likely take hours due to the shutdown. She also felt the need to do something other than think about what she had just survived.

“Being able to be at work and helping instead of reliving that,” she explained. “I was like, ‘I need to get to work and just see where I can help.’”

Rebecca acknowledges this is something she will be processing for a very long time. She allowed her husband to come get her a few hours later and take her to a hospital. Thankfully, she only suffered bruises. But she’s already dealing with survivor’s guilt, wondering why she was able to walk away when so many others couldn’t.

“My heart breaks for all the people who lost loved ones, and who have loved ones in serious condition,” she said. “It's horrible, awful, terrifying.”

Rebecca remembers seeing many people in scrubs as she was walking along the interstate and calls the situation a ‘perfect storm’ for health care workers, all trying to get to work at the same time. Asked if she felt like a hero, she adamantly says ‘no.’

“I feel like I'm absolutely blessed and had guardian angels surrounding me,” she said. “I did what any other nurse I know would do. I didn't save anybody. I didn't do anything extraordinary. I just did what I'm supposed to do.”

She says the experience also gives her hope. From the first responders to good Samaritans, she says she saw the good in people. Even when she was safely waiting with Ed and Kim, she remembers a man walking car to car with a box of granola bars for anyone who may have skipped breakfast and needed something to eat.

“It gave me a lot more faith in humanity.”

If laughter is the best medicine, then the therapeutic medical clowns at Cook Children’s have just the right dose to help patients and their families heal.

Each professional clown comes from a different background and different experiences, ranging from the theater to the circus. But they all come together at Cook Children’s with the common goal of making people smile.

“We’re all different, but together we make a great team,” said Susan Keys, a therapeutic medical clown known around the hospital as Dr. Yahoo.

Tiffany Riley brought Funnyatrics, the therapeutic medical clown program, to Cook Children’s in 2014 and has been directing their training workshops since the program’s inception.

“Everyone that does this has a different way of looking at the world. We like to call it clown logic,” said Riley, a therapeutic medical clown and the program’s creative consultant. “They may express that through doing magic or juggling or improvisation or being a musician, so what we do is take those skills and talents that they already have and bring them into a hospital environment."

Although the clowns are able to use their individual skills and strengths to their advantage, they all must have the ability to improvise and think on their feet.

“In our training, we teach them how to engage their audience, whether that audience is a room full of people or one patient in the ICU,” said Riley. “The idea is to be present and aware of everything going on, to have a heightened sense of awareness and to take all of that in and find a way to connect. From that connection, we can create an exchange that creates levity, uplifts the environment and gives the kid some power to make choices, which is not something they often have in a hospital.”

Some people assume that a certain patient might not benefit from interacting with clowns and even discourage a clown visit. But the art of clowning is about making connections with patients and their families, so these clowns will do whatever it takes to bring laughter or a smile to their faces, no matter how difficult the situation may be.

“There was one kid we saw that was blind and my partner played music while I sang and we had the best visit with that kid,” said Keys. “The staff couldn’t believe that he was reacting because he wasn’t doing anything before, almost like he was comatose. He couldn’t see, but he could hear.”

Medical clowns don’t need any words or special equipment to communicate with these patients. From music to magic tricks to bubbles, everything they need comes from their pockets and their imagination.

“We start with the normal stuff that we do and just keep going until we find something that works with that particular patient,” said Grainger Esch, a therapeutic medical clown who goes by the name Dr. Quack. “But there is always something we can do.”

There is something innately artful about the relationship between these clowns and the patients they serve that benefits everyone involved.

“We have a gift,” said Keys. “Somehow we give them what they need and it’s just great. One day I was in a room and this kid just wanted to hold my hand for 10 minutes, and I did. I mean, that’s all I did and it was a gift to me.”

Anyone, regardless of their situation, can benefit from spending time and interacting with the medical clowns.

“There are some kids that are ready to play the moment they see us and it’s really a lot of fun,” said Riley. “But for other kids who just look at us, seeing even the tiniest corner of their mouth turn up into a smile is a victory. It’s about us going and meeting them where they are and finding a way to draw them out or help them to get over a hump.”

Medical clowns can be a great distraction to help kids forget whatever pain or hardship they may be enduring, even if just for a moment.

“That’s why I like to teach tricks,” said Keys, “because it focuses them on something other than hurting or not feeling well, and then they forget for a minute that they don’t feel good. Not that they still don’t, but they don’t focus on the pain or how they feel.”

The clowns also assist the medical team by turning things like walking after surgery or taking medicine into a game so that the kids do not realize what they’re actually doing.

“We’re engaging that very healthy, playful spirit of a child that doesn’t go away just because they’re sick,” said Riley, “you just have to work a little harder to find it. And once you find that playful spirit, it makes healing a lot quicker and easier.”

When kids are able to laugh and play, they release endorphins that aid in their recovery.

“Scientific studies have shown that it does improve recovery rates to laugh,” said Esch, “and there is so much stress and worry already, so to have a break from that, even if it’s just for ten minutes, can really change a person’s perspective. To see that you can still laugh is a revelation that gives them the hope they need to keep fighting.”

Aside from bringing magic tricks and fun, the clowns are able to make deep, impactful connections with patients and families.

“Sometimes kids or their families just want somebody to talk to, and at that point it gets real,” said Esch. “Sometimes we go in a room and the kid is asleep, but the parents or siblings might be in there and we’re here for them as well.”

While Keys and Esch say that forming connections with patients and their families is one of the best parts of their job, it is also one of the most challenging. They usually see outpatient kids only once, but they visit oncology, bone marrow transplant unit and ICU patients on a weekly basis.

“We went to one funeral not too long ago,” said Keys, “and we’d known him for two years. That’s the hardest part of our job.”

Since there is a very emotional element to the job, a chaplain comes to the clowns’ meetings to provide counseling once a month.

But the program would not be nearly as rewarding as it is if these clowns did not form genuine connections with people and clown from the heart.

“The kids wouldn’t buy it,” said Esch. “That’s the thing about kids, they can sense when it’s not genuine so you can’t fool them in that way. You can do a magic trick and fool them with some sleight of hand, but you can’t fool them with your intentions and feelings.”

The therapeutic medical clowns at Cook Children’s continue to use songs, jokes, hugs and laughs to bring a smile to anyone who will let them, from patients and families to doctors and staff.

“We’re here for everybody,” said Esch. “It’s primarily for the kids, but everybody here needs a laugh so that’s what we try to do.”

Related stories:

• Canines Clock In At Cook Children’s
• The Art of Music: Therapy in Disguise

Funnyatrics

There's an old saying that laughter is the best medicine. At Cook Children's, we believe it's certainly good for you. That's why we offer Funnyatrics, a therapeutic medical clown program. Our professional clowns use humor and laughter to help our patients in their healing. Learn more about the program here.

To support Cook Children's, please call 682-885-4105 or donate online by clicking here. 

Targeted cancer therapies are biologic or immunologic drugs or agents that target cancer cells in the body while leaving most healthy cells alone. These drugs have become a common treatment option for adults with certain types of cancer and, in recent years, clinical trials have shown success for some childhood cancers.

“Targeted therapy is the future of pediatric cancer treatment,” said Dr. Vallance. “Being able to offer more targeted therapy through clinical trials means Cook Children’s cancer patients will have access to the newest treatments available.”

The oncology team at Cook Children’s diagnoses approximately 220 new cancer cases each year. Approximately one thousand patients undergo active treatment or follow up through Cook Children’s each year.

The grant money awarded by St. Baldrick’s will be used to fund a Targeted Therapeutics Program Coordinator. Under direction of Dr. Vallance, this person will coordinate and collaborate with consortiums and pharmaceutical partners to open new targeted therapy clinical trials at Cook Children’s.

“We’ll be able to efficiently open more trials, which will give all patients in North Texas and surrounding areas access to leading edge clinical trials closer to home,” Dr. Vallance explained.

Cook Children’s is one of five hospitals in Texas, and the only hospital in North Texas, selected to receive a portion of $2.26 million dollars in infrastructure grants awarded bySt. Baldrick’s this year. All of the grants awarded will support groundwork for childhood cancer research.

The St. Baldrick’s Foundation is the largest private funder of childhood cancer research grants worldwide. Since government funding for childhood cancer research is limited, research institutions like Cook Children’s depend on private organizations like St. Baldrick’s for support in finding new cures and treatments.

“The majority of childhood cancer patients are treated on a clinical trial,” said Kathleen Ruddy, CEO of St. Baldrick’s. “Research relies on enrolling large numbers of patients on clinical trials to ensure results are meaningful and advancements are made. Funding from St. Baldrick’s will ensure more kids have access to clinical trials, giving them a better chance at survival and a future with less long-term effects.”

The infrastructure grant awarded to Cook Children’s is the first step in the creation of a formalized Targeted Therapeutics program.

“As this research continues for all types of childhood cancer, we will see more opportunities for each child and young adult to receive personalized, targeted therapies as part of upfront standard therapy,” said Dr. Vallance. “Hopefully, this will lead to higher response rates, less toxicities and more cures.”

Navigating Transitions in Leadership

Frank McGehee, M.D., is a pediatrician in the Cook Children’s Magnolia clinic. He practices in an office that has roots in an 80-year tradition of providing excellent patient care to the children of Fort Worth. He has seen many changes in medicine, but still believes that the heart of pediatrics lies in his connection with families.

There are probably a bunch but what are a few of the big changes you have seen in pediatrics over your career?

How have you seen your role in leadership change over your career?

What do you see coming for you in leadership in the next few years?

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Cheerleading has changed in the past 30 years from yells and claps to routines with high level gymnastic tumbling runs and stunts. It has also become a year-round sport with summer camps and cheerleading competitions. This has increased the number of injuries, especially in females. Most common injuries are fractures, strains, sprains, and concussions. Due to this change in the demands of cheerleading, it is important for coaches and cheerleaders to understand proper techniques during stunts and tumbling, strengthening, leg and arm alignment, core activation and different risks related to floor surface and practice time.

Cheerleading has not historically been recognized as a sport, at many levels. This means cheer may not be under the control of an athletic department.  Cheerleading does not have to follow certain rules and regulations that other sports monitor and improve for  safety. Therefore, increasing safety awareness is key for protecting cheerleaders.

Loading, body mechanics and alignment

The way in which a cheerleader lands when tumbling is also very important in preventing injuries. Soft landings are the way to go. A soft landing is best with knees slightly bent and weight more on the toes rather than heels. Do not allow the knees to go in or forward over the toes; instead, keep toes and knees pointing forward with upright chest and tightened core. Tumbling and stunting on a softer surface is always preferred rather than a hard or wet surface.

Injuries have been related to improper loading due to decreased strength, body awareness and lack of proper alignment with body mechanics.  Loading refers to the pressure or weight a cheerleader has through their arms, legs, and spine while holding a stunt and landing a tumbling pass.

Cheerleaders need  to be aware of their body mechanics. Body mechanics is proper body movements to prevent or correct posture problems, reduce stress on the body, and enhance physical capabilities.   Strengthening cheerleaders’ cores, legs and arms will improve body mechanics and decrease injuries.

Here are some proper basing and spotting techniques from the bottom up, to address proper alignment for good loading and body mechanics: 

• Keep feet shoulder width apart with toes forward or slightly out; heels on the ground.
• Knees should never go forward past the toes or inward.
• Hips should stay over feet with equal weight.
• Trunk stays upright- do not bend or arch the back/spine when spotting a stunt.  
• Arms directly above shoulders; not behind your head when spotting a stunt.

Cheerleaders can be strong too

As cheerleading has become more about stunts and tumbling, it requires strength, balance and stability.  Coaches should be focused on strength-building conditioning, which includes core stability and proper lifting techniques. It is also beneficial for coaches to attend safety certification classes, such as those offered by the American Association of Cheerleading Coaches and Administrators (AACCA). Prior to any cheerleading event, a proper warm up with aerobic activity and dynamic stretching is necessary to prevent injuries. Stretching after cheerleading is just as important to decrease injuries. The longer the practice, the higher the risk for injury is. Most injuries happen between 61 and 90 minutes of practice.

Increasing awareness of concussions 

Cheerleaders are at high risk for sustaining concussions, which is a head injury/trauma to the head when hit.  Cheerleaders sustain concussions with a fall from high heights, being hit in the head when basing, or landing on their head during tumbling.  It is important to stop cheerleading if there is a possibility of a concussion. Signs to watch for include: headaches, dizziness, visual blurriness/double vision, memory issues, decreased coordination and balance problems. If these symptoms are present, the cheerleader should seek medical attention immediately.

Most concussions heal in about a month, however if cheerleaders continue to have the symptoms, they may need active rehabilitation. It is never good to return to cheerleading too early; it may make their full recovery longer.  If a cheerleader has any signs or symptoms of a concussion, they should not be allowed to return to cheerleading until cleared by a physician.  Cheerleaders are 3-6 times more likely to have a second impact concussion after having their first concussion;  the second impact concussion can have more severe complications.

American Academy of Pediatrics recommendations for preventing injuries:                                              

• Cheerleading should be designated as a sport in all states, allowing for benefits such as qualified coaches, better access to medical care and injury surveillance.
• All cheerleaders should have a pre-season physical, and access to qualified strength and conditioning coaches.
• Cheerleaders should be trained in all spotting techniques and only attempt stunts after demonstrating appropriate skill progression. 
• Pyramid and partner stunts should be performed only on a spring/foam floor or grass/turf. Never perform stunts on a hard, wet or uneven surface. Pyramids should not be more than 2 people high.
• Coaches, parents and athletes should have access to a written emergency plan.
• Any cheerleader suspected of having a head injury should be removed from event and not allowed to return until cleared by a health care professional.

Related links

• The Cook Children's SPORTS program
• Cheerleading Injury Prevention
• Top 10 questions parents have about sports injuries

The incidence of anxiety and depression in pediatrics is due in part to overscheduled children and families. Here are some suggestions on how to slow down and find some down time with your family.

1. Gardening: My children’s happiest moments have been picking tomatoes and digging out potatoes in their grandparent’s garden. In describing her experiences in the garden, their grandmother, Jean Mangham writes “I love to get outside to feel the sun, smell the dirt and hear the birds sing. My garden provides me with a place to see the miracle of life. Put a small seed into the dirt and with just a little nurturing, you produce a fruit or a flower. Gardening also provides me with a great sense of pride, and how important that is to pass along to my grandchildren.”
2. Kathleen Wayland, a music teacher, writes, “Relaxation is a learned behavior. A child’s day, even one spent at home, can be very stimulating, offering a little, unstructured quiet time. Having some quiet time with your child provides an opportunity for you to model relaxation for your child and let them know they can relax, even when it’s not naptime or bedtime. This is also a wonderful opportunity for some bonding time to deepen your connection with your child. Holding, rocking, singing and cuddling are all ways to have a quiet, bonding time that will relax both of you. Children need time to be stimulated and engaged, and they also need time to be at leisure. This down time is physically necessary for the brain to process the learning that occurs during structured activities and interaction.”
3. One of my yoga instructors once said, “If you can breathe, you can do yoga.” The practice of yoga and meditation promotes physical and mental wellness. Heidi McGall, a trained yoga instructor teaches kids relaxation: “I have kids close their eyes and imagine a balloon in a big empty blue sky. Imagine anything that is bothering them – schoolwork, family life, things that are nagging them. Imagine tying all those troubles to the balloon. Then they set the balloon free. It floats off into the blue sky out of their vision and they are left with the perfect blue cloudless sky. Then take a big inhale and exhale and open their eyes.”
4. Take your children outside. Being near trees and under a blue sky are inherently relaxing. Go for a walk, take a bike ride, plan a camping trip. Read the book, “Last Child in the Woods” by Richard Louvs. He describes why being in nature is important for children. He lists nature activities for kids and families. Have you and your kids seen the movie The Lorax? You should. It is a thoughtful look at the value of nature in the lives of our children.

And to quote another wise sage, “Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.” – Ferris Bueller.

Along with this goal of each child’s attendance, we have to balance the goal of keeping others safe from infectious diseases. Our contagious students need to stay home when they are sick to keep the rest of their classmates safe. (This is why I don’t really care for perfect attendance bike raffles. I prefer responsible attendance.)

Balancing these tensions is often hard for the parent, the school and the pediatrician because we often don’t know exactly when a child is no longer contagious. This is why I got so geeky excited last week to see a new study released in the Pediatric Infectious Disease Journal about the contagiousness of strep throat.

The study looked at 111 children with strep throat over two days.

Day 1: Children who tested positive for strep were given their first dose of amoxicillin before 5 p.m. (They also had cultures taken which allow to see if bacteria will grow from a swab of their throats.)

Day 2: Children were retested and cultured for strep in the morning to determine if they still carried the bacteria in their throats.

Here is what they found:

• 101 children tested negative for strep on the morning of day 2.
• 7 children had significantly decreased growth of bacteria from their throat cultures.
• 2 children continued to have high loads of bacteria.

The author’s conclusion: “all children treated with amoxicillin for streptococcal pharyngitis (strep throat) by 5 p.m. can, if afebrile (fever free) and improved, may be permitted to return to attend school on day 2.”

I’m pretty sure you’re not as excited as I am, but THIS IS HUGE!

Based on current guidelines, children must be treated for 24 hours before being allowed to return to school. If we treated according to the results of this study, it would allow for the child to be back in school and for the parent to be back at work a whole day earlier.

I feel like there is a lot of work to be done in this area and this type of study, along with other models of health care delivery, are good examples of the work that will be necessary.

Because I value education and our school districts so much, I want to be constantly thinking about ways we can do this better. As a general pediatrician, I can really boil down the goals of my job to these:

1.Keep kids growing and healthy.

2.Keep kids developing and learning.

Early in your baby’s life, this looks like frequent checkups for preventing illness, monitoring growth (and talking about diet) and teaching ways that parents can help their child with development. (Read: Everyone should homeschool.)

As your child gets older and starts school, my role changes a little bit. I don’t ask my elementary age patients about fractions or my high school students about “The Great Gatsby.” Instead, I might ask, “How is school going?” “Any problems I need to know about?” “Any way I can help?”

On a practical level, this means offering school aged children after school appointments when possible. It means getting sick kids in the same day so that we can start treatment and get them back in their desks as soon as possible.

In the future, this may mean totally different modes of delivering health care and working with the school and school nurses in order to decrease missed class time.

But I’m getting ahead of my geeky self again. I’ll save that discussion for later.

Here's why:

There has been an outbreak of severe flu among dogs in the Midwest. Cases of the H3N2 strain have now been seen in dogs in Texas.

Most dogs have cough, runny nose and fever, but it has been severe and resulted in death in some.

So you may be wondering, “Is my child at risk if our dog has this flu?”

The answer, according to the CDC:

“To date, there is no evidence of transmission of canine influenza viruses from dogs to people and there has not been a single reported case of human infection with a canine influenza virus.”

That’s fortunate, but what are some health dangers associated with pets?

Bites

I’ve seen too many severe dog bites in my training to not mention bites first. The most common statement I hear about the dogs who bite is, “We just never thought he/she would do that.”

Dogs can be a great addition to a family but use caution:

• Be careful of rough play. Even a playful snip can be dangerous if it happens near the eye or a fingertip.

• Stay away from dogs when they are likely to be defensive: when they are eating, sleeping or taking care of puppies.

• Stay away from unfamiliar dogs or dogs that seems scared or anxious.

Here are some more tips from the ASPCA on how to avoid dog bites.

Allergies/Asthma

This is actually one of the most common questions I get regarding animals. It’s very intuitive. People can be allergic to dogs and cats, so wouldn’t owning one increase my child’s risk for allergies?

I have seen several studies that suggest the exact opposite. Often by having animals in the house early, kids may have slightly decreased risk of developing allergies. That said, if your child has frequent allergy and asthma symptoms, it may be reasonable to attempt to isolate the animal from the child for a bit to see if symptoms improve.

Infections

Infectious diseases are transmitted through animals frequently; think about the number of diseases that tics and mosquitoes can carry. Although it can happen, they are less frequently transmitted from pets.

Here is a list of pets and some of the diseases they can transmit:

Cats

Cat-scratch fever:

This disease is caused by bacterial infection (Bartonella) of an open wound or a bite that results in the breaking of skin. It is more commonly transmitted by kittens than older cats. Symptoms of the infection in humans are fever, headache and fatigue. There is often a large and tender lymph node near the site of the bite.

Toxoplasma:

Toxoplasma is usually a foodborne illness, but can be transmitted from cat feces. In people with normal immune systems, there are often no symptoms of toxoplasmosis. Pregnant women (and fetuses) are especially susceptible and, for that reason, should not handle cat litter boxes.

Dogs

Hookworms:

Dogs infected with hookworms can have bloody stools; which in severe cases can lead to anemia. Humans are infected by walking barefoot on contaminated soil and develop an interesting rash which consists of red, squiggly lines where the larvae have migrated under the skin.

Reptiles

Salmonella:

Salmonella is one of the most common pet-associated infections. It is estimated that 70,000 people will contract salmonella from pet reptiles. Salmonella generally causes bloody stools but in children and in people with weakened immune systems can be serious. The CDC recommends that houses with children less than 5 and with any household members with weakened immune systems not own reptiles as pets.

Many Animals

Campylobacter:

Ingesting food contaminated with the bacteria transmits most infections of campylobacter, but cases can occur from the handling of dog or cat feces. The main symptom of campylobacter infections is diarrhea (which can be bloody) and usually lasts about one week.

Ringworm:

The fungus that causes can be transmitted from many different animals but most commonly occurs from puppies and kittens. The appearance of the rash on human skin is a circular rash with a raised edge. It can be difficult to distinguish from eczema which sometimes causes circular patches as well.

Pets can be great additions to your family and, in most cases, will not cause any harm to your children. Be aware of the specific risks associated with certain types of pets and take caution to protect your children when appropriate.

From birth, your child is undergoing changes at a rapid pace and many factors may influence these changes, including your child’s genetic makeup, the environment in which you raise your child, nutrition, and medical care, to name a few. 

Though there are ranges in which kids attain developmental milestones, a delay in achieving certain skills does not necessarily mean that your child is ‘developmentally delayed.’ One should remember that "normal" is expressed in many different ways.

A child’s body systems can be categorized into motoric, sensory and cognitive components and can encompass a wide variety of changes, not to mention the defining personality and emotional changes that are occurring at the same time.

Typical development does occur in stages and can help you track your child’s progress, as listed below:

• Developmental milestones by age/dimension:
  • 3 months:
    • Physical development: Your baby is beginning to explore his/her environment and will start to push up on his/her arms and lift the head up against gravity for a short period of time.
    • Speech development: As you feed your baby, you will notice he/she will refine his/her ability to suck and swallow, will coo to the sound of your voice and smile, and turn his/her head in response to sound.
    • Play development: When playing with your baby, you will notice he/she will be able to follow toys with his/her eyes and reach for them. Your baby will also be able to position his/her head in the middle during interaction with people/environment.
  • 6 months:
    • Physical development: As your baby gets stronger, he/she will be able sit up with the use of his/her hands, will be able to explore his/her environment with rolling from back to stomach. When you hold your baby, notice that your baby can tolerate supported standing with full weight through his/her legs.
    • Speech development: What an exciting time for progress with your baby’s communication! Your baby will now start to babble in order to get your attention. Make sure to keep cereals and pureed foods handy, as your baby is now ready to eat these items.
    • Play development: ‘Tummy’ time is important during this stage of development and you will notice your baby reaching for objects when placed on his/her stomach, and will be able to hold onto his/her feet during play when placed on his/her back.
  • 9 months:
    • Physical development: Your baby is getting stronger during this age and should be able to sit up and reach for toys without a loss of balance, can transition from the floor to sitting, and can crawl using opposite hand/knee movement.
    • Speech development: During this time, your baby will be able to visually recognize familiar people and toys when named; and will now begin eating mashed table foods.
    • Play development: At this time, your baby will use both of his/her hands to play with toys, and will start mimicking others.
  • 12 months:
    • Physical development: During this time of rapid growth, your baby’s leg strength will truly begin to progress with pull-to-stand movements and walking alongside furniture with two-handed support. Your baby may begin to stand independently and take a few steps!
    • Speech development: Get ready to hear ‘mama’ and ‘dada’ frequently as your baby now will be able to call you by name and will be able to follow 1-step instructions!
    • Play development: With play, your baby will be able to use a pincer grasp to hold onto tiny objects/toys, and be able to grab and release toys/objects; at this time, your baby will also be able to start feeding himself using his/her finger.

Though the above characteristics of movement, speech, and play development are TYPICALLY observed in normal developing babies, do not be alarmed if milestones are not met right on time. Some kids develop at a more rapid rate while others may take more time.

There are some red flags to watch for and may indicate a possible need to make an appointment with your baby’s pediatrician, and potentially be referred to a developmental therapist (physical, speech, or occupational). These include (not inclusive of all signs):

• Stiff movements that are consistent throughout the first 3-6 months
• Decreased arm movement or asymmetrical arm movements that lasts through 9 months
• Rounded back
• Difficulty with or inconsistent visual tracking or lack of turning towards auditory stimuli
• Difficulty putting full weight through legs or needed hand support during sitting at 12 months
• Frequent toe-walking at 12 months onwards

Remember, each child is unique and though it is crucially important to monitor your child’s development, it is also important to allow your child to develop at his/her own pace and realize that ‘normal’ can be defined differently for each child.

[Source: Developmental milestones handouts (Cook Children’s), Pathways Awareness Foundation 2006, endorsed by the American Academy of Pediatrics, revised 09/10]

About the author

Radhika Trivedi, PT, MSPT, DPT, is a physical therapist at Cook Children's. Physical therapy focuses on large motor and functional skills to enhance development restore function and prevent disability from pediatric conditions, illness or injury. Cook Children's offers Rehabilitation Services in Fort Worth, Hurst and Mansfield.

And yet, unless it happens to your child, most of us never think of children having a stroke.

“Unfortunately pediatric strokes have been ignored for a long time as a true entity,” said Fernando Acosta Jr., M.D., associate director of Cook Children’s Pediatric Neurorehabilitation and Movement Disorder Program. “This has changed over the last few years. The awareness is increasing.”

Strokes in adults are often brought on by behavior such as cholesterol, high cholesterol, a history of smoking, too much alcohol and obesity. For children, strokes are usually caused by birth defects, infections such as meningitis and encephalitis, trauma and blood disorders such as sickle cell disease.

“A problem with pediatric strokes, in contrast to those in adults, is that in pediatric strokes, the causes and circumstances are incredible diverse,” said Marcela Torres, M.D. medical director of Hematology at Cook Children’s. “For example, the physicians at Cook Children’s Stroke Clinic see children from 0 to 18 years. Additionally, the potential causes of stroke vary radically from a neonatal stroke to the stroke in a teenager/young adult.

Related Disabilities

Stroke-related disabilities is another area where childhood and adult stroke survivors can differ.

While strokes in children can be devastating, the good news is children often have a better ability to heal because of the greater plasticity or flexibility of the child’s nervous system and brain. A child’s brain is still developing, therefore it may have a greater ability to repair itself. With the help of physical and speech therapy, most childhood stroke survivors recover the use of their arms, legs and speech.

Symptoms of a stroke

The most effective stroke treatments must be given within the first three hours after stroke symptoms start. By recognizing signs of stroke in children and acting fast, you can help medical professionals lessen a stroke’s damage to the child’s brain. Use the following tool to help you think F.A.S.T.:

For more information:

Approximately six in 100,000 children are affected by stroke. Here in the U.S., it is a leading cause of death among children. Nearly 60 percent of childhood strokes occur in boys. Because the causes and symptoms are so different, treating stroke in children requires specialized training, such as what they will receive at the Cook Children's Stroke and Thrombosis Program.

Now she prays for Tre’s caregivers to make her son all better.

Tre, who is 9 years old, has been seen by the Rehabilitation Services team at Cook Children’s since his parents adopted him as an infant. Most of those issues centered on his articulation skills. Tre’s history with Rehabilitation Services started with audiology and other physician specialists; speech therapy services began at 7 years old working on articulation skills. 

Then about 15 months ago, Sara Adams, Tre’s speech pathologist, received a call from Jennifer to say her work with him would have to go on hold indefinitely.

Tre was involved in a horrible boating accident. He sustained a head injury and was in a coma at another hospital. But the miracle for the Faulkner family occurred and within two weeks, Tre was up and walking.

After his accident, Tre returned to therapy at Cook Children's Urgent Care and Pediatric Specialties – Mansfield and worked with Occupational Therapy, Physical Therapy and Speech Therapy to regain skills that were lost after his brain injury.

A year later, much of Tre’s care takes place at the Cook Children’s Rehabilitation Services at Mansfield. The focus is on Tre’s short-term memory loss and his severe ADHD, as a result of the injury.

“God has blessed us so much,” Jennifer said. “The Mansfield community has been with us since the beginning, I’m so thankful. I’m also thankful for the amazing care Tre has received since his injury. At Mansfield, Tre has really been helped in many ways, through his physical, occupational and speech therapy. They have helped him so much with his memory and his balance. It’s truly been miraculous.”

The rehab at Mansfield is working for Tre. Academically, Tre’s test scores are in the average range for a child his age. His mom says he’s learning and making strides every day.

And Tre’s doing very well physically. He recently received his gold belt in karate. Makes sense for a kid who has proven time and time again how tough he is.

“The progress Tre has made since his accident is truly remarkable,” Adams said. “Tre still has some struggles with his attention and memory that impact him every day. However, he continues to improve and learn how to work through these struggles. Tre’s sense of humor, determination, and supportive family are his greatest strengths. Tre is such a funny kid! He loves to tell jokes and riddles. One of his favorite jokes is: ‘Why don’t ducks tell jokes when they are flying? … They might quack up!’”

To see how far Tre’s come since his injury it’s hard not to smile at the miracle that’s occurred and the occasional duck joke.

For more information

At Cook Children's, we provide more than 60 pediatric medical and specialty clinic offices throughout Texas. Thanks to our skilled group of clinicians who support the leading-edge technology found among our specialty services, Cook Children's is the destination when it comes to taking care of your children.

Cook Children's Urgent Care and Pediatric Specialties - Mansfield is located at:

801 Matlock Road

Mansfield, TX - 76063

To make an appointment, call 817-347-8400.

Specialty services at Mansfield inlcude:

• Endocrinology and diabetes
• Gastroenterology and nutrition
• Nephrology and dialysis
• Neurosciences
• Orthopedics
• Pediatric surgery (inpatient/outpatient)
• Psychiatry and psychology
• Rehabilitation
• Urgent care

I just got back from a vacation at an indoor water park; otherwise known as The Land of Five More Minutes. I could not walk around without hearing some child be told how much more time they had before they had to leave.

It’s no secret that children, especially young children, have a hard time with transitions.

One great way to ease these difficult times is to set them up with a defined period before their current activity is going to stop. Another is to set clear expectations for what is going to come next and your expectations for their behavior and attitude at the time of the transition.

The conversation might go like this: “We have five more minutes, then we are going to change clothes and go eat lunch, all with a happy attitude.”

I’m pretty sure grandparents think we’re crazy for walking around at the mercy of the timers on our phones all the time but it really can work well.

Here are some ways to fail at using your timer:

1. Bargain - Five more minutes turns into one more and one more until everyone is hangry (hungry and angry) and the whole point of the timer is defeated. Besides, think about the culture you are setting up for your child. Your word and your boundaries mean nothing because they know with enough fussing they will get their way.

2. Choose the wrong time - Thirty seconds isn’t enough. Ten minutes is too long. Somewhere in-between is just right.

3. Be inconsistent - If you only do a timer once a week, it is not going to work. Your children need to know what it looks like, how it works and know that you are going to stick with it no matter what.

You may feel like a timer is the most ridiculous thing you could ever imagine (especially if you don’t have kids, because I was a perfect parent before I had kids too). If you think it is silly, that’s fine, it’s just a suggestion.

If you are doing it all wrong, make those changes.

If your kid screams every time they are asked to stop an activity, give it a try, what can it hurt?

About the author

Justin Smith, M.D., is a Cook Children's pediatrician in Lewisville . He attended University of Texas, Southwestern Medical School and did his pediatric training at Baylor College of Medicine. He joins Cook Children's after practicing in his hometown of Abilene for four years. He has a particular interest in development, behavior and care for children struggling with obesity. In his spare time, he enjoys playing with his 3 young children, exercising, reading and writing about parenting and pediatric health issues.

Paralysis

It may surprise you to know that there are more than 100 known varieties of non-polio enteroviruses in the world. All of these different types of enteroviruses can cause confusion and panic.

The non-polio enterovirus strains range from the common cold to meningitis. You may have noticed those strains are non-polio enteroviruses, which means that yes, an example of an enterovirus strain that can cause paralysis is polio.

Approximately 1 in 200 infections with polio will cause paralysis. Other enterovirus strains can cause similar symptoms, but do so much less frequently.

There have been a few reports stating that cases of EVD68 have possibly been associated with paralysis, most notably 10 cases in Colorado, 5 cases in California and now a case identified in Dallas. The most common locations for weakness have been the upper arms and hips.

But much work still needs to be done to decide what role EVD68 played in the paralysis. In a published Morbidity and Mortality Weekly Report last week, only four of the 10 children in Colorado tested positive for EVD68.

Investigation is ongoing to determine if these cases were actually caused by the virus. Those patients affected will be undergoing extensive physical therapy to regain function.

Death

The CDC released a report this week that announced there have been five deaths in which enterovirus D68 has been associated. We currently don't know the details of two of these cases. We do not know where the patients lived, their ages or if they had other medical conditions. These would all be important factors in determining the cause of death. The fourth patient was a 10-year old girl from Rhode Island who tested positive for enterovirus D68, but also for a bacteria in her blood stream called Staphylococcus aureus. Staph aureus infections are known to be dangerous, often progressing rapidly, and are resistant to many antibiotics.

Another case reported today described a boy who after an unexplained death was found to be positive for enterovirus D68. Prior to his death, he showed no signs or symptoms of upper respiratory infection, other than a case of pink eye which was proven not to be connected to EVD68. Because of these complicating factors, it is unclear what role EVD68 played in these deaths.

It is entirely possible that the others had similar stories with multiple infections or that they had other chronic health conditions which put them at risk for complications. At this point, I continue to believe that, in almost all children, enterovirus D68 causes mild runny nose and cough and that our biggest complication is the progression towards wheezing. Again, there are not many details out surrounding the deaths, but we felt it was important to update you on the situation given that we have stated all along that there had been no deaths clinically caused only by enterovirus D68. We will follow along and update you as soon as we know more.

Enterovirus D68 peaks in late summer and early fall so I expect that the number of cases to begin dropping soon (if it is not already on the way down). Other regions that experienced earlier outbreaks have already seen the end…they are doing what we will be doing soon, preparing for flu.

Our previous articles on Enterovirus D68:

• Health alert: What is Enterovirus D68?
• Enterovirus D68: What you need to know?

Unfortunately, the outbreak has hit a little bit closer to home as a traveler from Africa has died from Ebola in Dallas and a health care worker in the hospital has tested positive for the disease.

I wanted to take this opportunity to provide some thoughts on the situation:

1.Remember that the inital patient was a traveler from Africa and the second case was someone with close contact with the patient. No transmission has occurred through casual contact in the community.

2.Medical professionals across the country are aware of the concern of Ebola in returning travelers and should be asking about travel in patients with fever. If you know someone who has traveled to these areas who develops fever, encourage them to seek medical care and notify their provider or emergency room upon arrival (better yet, have them call ahead).

3.We have now treated multiple patients in the United States with success in helping them recover.

4.Remember to be cautious about how you talk about Ebola with your children. There is a significant amount of misinformation in our communities and especially on social media. What you tell your child matters as they will spread the message you send to their classmates. Widespread fear among the children in our area is unnecessary and could be harmful. If you want accurate information about the virus, check out our previous posts here and here.

We also spoke with Dr. Donald Murphey, medical director ofInfectious Disease at Cook Children’s, and he provided some wise perspective on the situation:

“Texas is a multinational country. We have new Texans coming from all over the US and all over the world … At Cook Children’s Medical Center and other large health care organizations, we are asked to care for patients with diseases that are not native to our area. We are asked to provide care for patients coming from West Africa that are ill. These patients often have fever and in most cases have malaria. They need high quality and prompt medical care. Now, we have had one case of Ebola in the US where a man was hospitalized in Dallas and later died. He, and others, can be cared for safely. We may go through a time when we are all concerned about Ebola in patients, even with minor illness, but Ebola will be contained in the United States."

About the author

Justin Smith, M.D., is a Cook Children's pediatrician in Lewisville . He attended University of Texas, Southwestern Medical School and did his pediatric training at Baylor College of Medicine. He joined Cook Children's after practicing in his hometown of Abilene for four years. He has a particular interest in development, behavior and care for children struggling with obesity. In his spare time, he enjoys playing with his 3 young children, exercising, reading and writing about parenting and pediatric health issues.

While I have had previous experience addressing academic issues with my patients, my son is now in elementary school, so I am developing a whole new perspective. I still do not understand all of the intricacies of special education, but I am lucky that I have colleagues who I can contact with questions concerning my own son, as well as my patients. 

The process is incredibly complex and confusing! Despite all of my knowledge, I also admit to sometimes feeling intimidated during school meetings. I frequently help the parents of my patients locate special education advocates because it is very easy to feel that your child's needs are not being addressed they way you would like at school.  Although maintaining a strong cooperative relationship with the whole team of professionals who work with your child is important, it is also sometimes necessary to fight more for your own child. That line, however, is not always clear, and all parents need to trust their instincts.

I considered leaving pediatrics after my son's diagnosis because I was not sure that I would be able cope with developmental disabilities at work and home. However, I soon realized that I would not ever really be able to escape my new role as a "special" mom. Instead, I made the decision to embrace the situation, which eventually led me to Cook Children's and specializing in pediatric stroke in my professional and personal life. 

Although having a child who is a stroke survivor does not make me a better neuropsychologist, it does give me more insight into the day-to-day struggles that my patients and their families face. I know that, in addition to the medical and school issues, my patients and their parents may be dealing with complex family, emotional, and financial issues that go along with having a child with special needs. If you do it right, being a parent to any child is a difficult job, and we all have moments when we look back and wish we had handled a situation differently. 

I have learned that it is extremely important for parents to take care of themselves, especially when their children have complex issues, because a child's needs are best met by a healthy parent.

Related Links

• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Cook Children's Stroke and Thrombosis Program

About the author

Carla Hearl Morton, Ph.D., is a pediatric neuropsychologist at Cook Children's. She is a licensed psychologist with expertise in how learning and behavior are connected to the development of a child's brain structures and systems. At Cook Children's, neuropsychologists work closely with a team of neurologists andneurosurgeons to provide the best treatments and interventions that meet the individual needs of each child.

After my son came home, I entered the world of therapies, and I became a huge advocate for Early Childhood Intervention (ECI). Having attended over 400 therapy sessions with my son by the time he was 3 years old, I learned a lot about how to work therapeutically with young children, and I picked up a few useful strategies along the way. I also realized that kids (and parents!) can become "burned out" on therapy. Based upon my experience, I encourage parents to focus their energy on whatever activity is most beneficial for their child at that moment and keep the ultimate goal of achieving the child's functional potential in mind when deciding how to best allocate their time.

Although I focus on evaluating children in my professional life, I developed a new perspective on the usefulness and potential impact of evaluations on a parent. For instance, would an evaluation change the current treatment plan or simply confirm that a child has deficits? I also became personally aware of something I have heard from several parents: It is difficult to constantly be reminded of all the things your child cannot do and how it is nice to occasionally hear about their strengths. A large component of the ECI model is teaching parents how to incorporate therapeutic activities into everyday activities. While I believe this approach has immense benefit, it can also have some drawbacks, which I eventually saw in myself and I look for in those extremely attentive and motivated parents. I realized that I was often so focused on making sure everything I did with my son had a therapeutic purpose, I sometimes missed out on the fun of having a baby. Just as children need to have time for fun with no other purpose than having fun, even if your child has special needs, parents need to allow themselves to enjoy their child as simply their child. Children like my son will have numerous therapists and other healthcare providers throughout their lives, but I am the only mother he has, and all of the other roles are secondary.

Having a child who I knew from the beginning may not develop typically was also strangely freeing. Because my job is to track a child's development, I know that I would have fallen into the competitive trap of comparing when my son met each milestone, which was made worse by the fact that many of my friends having children at that time were also neuropsychologists. Because I began to expect delays, my son became free to develop at his own pace. While it is important to know if a child is falling behind so that interventions can be started early, a child's development should not be the contest it has become, and we should allow children some freedom to develop in their own unique way. 

My background in mental health also made it easier for me to acknowledge and process my own feelings of grief.  Although my son survived, it was essential to acknowledge the loss of the "perfect" child that everyone imagines while they are pregnant. That disappointment is a loss and important to honor because any intense emotions that are "buried" do not truly disappear forever. I also sometimes talk with the parents of my patients about their own symptoms of Post-Traumatic Stress Disorder, because experiencing your child's serious medical condition can definitely result in feelings that a parent needs to process. Because of my work, I also do not feel the isolation that many of my families experience. In my world, pediatric strokes are almost normal, and a child whose only healthcare provider is their pediatrician is "weird." I also continue to learn so much from my patients that I am able to use myself and pass along to other families.

Related Links:

• Cook Children's Stroke and Thrombosis Program
• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Stroke at birth - part 4

Six years ago, my life changed forever...

At that time, I was completing my postdoctoral fellowship in pediatric neuropsychology. I also became pregnant with my first child. Because I had some "inside" information about a few hospitals in the area after having worked in them, although a little farther from my home, I chose to deliver at a hospital with a competent staff and top-notch facilities -- a decision that likely saved my son's life and possibly my own. While in labor, I suddenly went into distress, and my son was quickly delivered via cesarean section. He was whisked away to the NICU before I was even able to see him.

Those of us in pediatric neuropsychology know the hundreds of things that can go "wrong" with a child even before they are born, and the downside of that knowledge is that it can give us very specific things to worry about. However, like everyone else who has experienced a similar situation, I did not really think it would happen to me. But it did. 

My son had a stroke during birth, he needed a ventilator to breathe, and he developed seizures. Unlike parents who question the role that their healthcare providers may have played in their child's condition, understanding that my son's stroke could not have reasonably been predicted brings me peace. I also know that I did not do anything to cause my son's stroke. This is different than the mothers of some of my patients who question every insignificant thing they did or did not do during their pregnancy because it might have played some tiny role in their child's condition.

Although most parents remember their baby's weight and length, the more important information for me was his Apgar scores and the location and extent of brain damage I saw on his imaging. Unlike most people in my situation, I did not have to ask about the potential future outcomes. I had worked with children who had severe disabilities, and I knew it was possible that my son could emerge with significant challenges. However, I was probably less frustrated whenever I was told that his future level of functioning was uncertain.

Having been on the other side of that conversation, I knew it is often difficult to predict what will happen several years in the future, particularly while a child is very young. Although some doctors like to be optimistic about a child's prognosis, others prefer to provide a more pessimistic assessment so that the parents may be pleasantly surprised by their child's better-than-expected outcome. I agree that most people prefer a definitive answer, even if it is one that they dislike, but "I don't know" is often the most honest answer to a parent's question.  

Related Links:

• Cook Children's Stroke and Thrombosis Program
• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Stroke at birth - part 4

About the author

Carla Hearl Morton, Ph.D., is a pediatric neuropsychologist at Cook Children's. She is a licensed psychologist with expertise in how learning and behavior are connected to the development of a child's brain structures and systems. At Cook Children's, neuropsychologists work closely with a team of neurologists and neurosurgeons to provide the best treatments and interventions that meet the individual needs of each child.