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Share Your Story: Finding Hope and Staying the Course Through Perthes Treatment

Share Your Story: Finding Hope and Staying the Course Through Perthes Treatment

by | Nov 20, 2023 | Hip Disorders

Blog written by Megan, Garrett’s mom

In June 2022, Garrett developed a limp and complained about his right knee hurting. We went to his pediatrician for an X-ray after a few weeks of not getting any relief. He had just attended a basketball camp and is active in many sports.The knee X-ray in June showed no damage, sowe started some chiropractic care to stretch and see if we could determine what was causing his pain. After 6 weeks, nothing changed. Garrett would say that his hip was “tight,” but he said there was no pain.

Garrett had an MRI in August so we could determine the next course of action. It was in the MRI that it was discovered his femoral head was quickly deteriorating, and he had Legg-Calvé-Perthes disease. We went to a local hospital for a consultation, and my son was told not to walk on his own without the help of crutches. The word “nonweightbearing” was seared into our brains.

He started school four days later, and we had to urgently contact his school’s administration to discuss accommodations for him.  There was so much anxiety about attending school on crutches and being asked questions. Garrett didn’t want to tell anyone what was going on, and I dreaded the school year knowing this was going to be the most challenging thing he’d ever faced.

While our local health care options are great, we wanted to get a second opinion since this was such a devastating diagnosis for such an active and energetic kid. I started reading everything I could on Perthes disease. I was up late one night researching the disease, and I found some videos featuring Dr. Harry Kim with Scottish Rite for Children. He just seemed to be the expert in this condition, and I wanted nothing but the best care for my son. 

I requested an appointment online, and we were contacted the next day. Although we live nine hours away, we jumped at the chance to travel to Dallas and get a second opinion. I wanted to talk to a nurse to make sure we really should travel to see Dr. Kim. Despite some doubts, something kept gnawing on me to keep pushing. Dr. Kim’s nurse, Kristen, called me a few days later, and we talked about the situation. She asked me to get the X-ray and MRI files to her for Dr. Kim to review. Soon after, she called me and said Garrett had an advanced stage of necrosis, and he needed to be seen as soon as possible. She set an appointment, and we cleared our calendars to make it to Dallas for a perfusion MRI and consultation with Dr. Kim. 

Dr. Kim reviewed his MRI. Garrett’s femoral head had completely collapsed in a period of about four months. He was a more challenging case, but Dr. Kim felt like we could, with treatment and surgery, get the best outcome if we stayed the course. On our drive home, I remember telling my husband that any guilt I had for seeking additional opinions was gone the moment Dr. Kim started explaining the treatment options. He was both conservative in his explanation but also gave me a sense of hope, too. He was clear that Garrett would end up in a wheelchair for a while, and he would need surgery. He wanted to do a tenotomy and a bone-marrow drilling to relieve some of the inflammation and tightness and then apply a Petrie cast to keep the hip in a certain placement as the first step. I clearly remember crying with Garrett at the thought of this massive contraption on my child. Dr. Kim had an opening for surgery in one week, and we jumped at the chance to get started. 

The first surgery went as planned. Nothing can prepare a child for waking up and being in a double-leg cast. However, the care team at Scottish Rite was amazing from the beginning. The Child Life staff brought in a mobile game console pre-surgery, and Garrett played some video games to take his mind off of the surgery. The day after his surgery, Child Life took him to the playroom area with games, toys, art projects, etc., for a few hours, and it was a blessing for me to get some rest.

Dr. Kim checked on him, and Garrett felt like a VIP by ordering his meals via the phone. As we prepared to leave after a few days, the Occupational Therapy and Physical Therapy staff took great care to show us how to get Garrett in and out of our car and worked with us to get to the bathroom, use the new (and massive) wheelchair, and prepare ourselves to go home and manage this new lifestyle for the next six weeks. 

Garrett couldn’t go to school normally during that first casting. The classroom doors were not wide enough to accommodate the platform that his legs had to rest on in the wheelchair. Every time we had to move him, we had to pick him up, take off the platform, push the wheelchair through the door, reinstall the platform, and then put him back in the wheelchair. It really is as daunting as it sounds. My husband Chad and I were very worried about the social toll this would take on Garrett. His teacher and the school administration were helpful and even had some home-tutoring set up. Garrett went to school for about four hours on a Tuesday each week to get in math and reading instruction.

The six weeks passed relatively quickly, and we didn’t stay inside and stay home. Our family is busy, and that’s an understatement. We run a small business, we work at lots of festivals and events, and we were not going to let this disease just stop us in our tracks. We were determined to make sure Garrett still interacted with people and was part of our lives as always. We took him to events, and he ran the cash register. He went fishing with his cousins. We hosted a video game birthday party with his friends where we just let them take over the living room and stay up as late as they could binging on junk food.His first cast came off in mid-November. It was joyous, and he was able to stay cast-free through the holidays.

We traveled back to Scottish Rite in early January and met with Dr. Kim. Unfortunately, Garrett had developed some stiffness and inflammation, and we couldn’t do an osteotomy as soon as we hoped. After correcting some issues with his brace, Garrett was cleared for his osteotomy soon after. He had to have a triple hip osteotomy instead of a femoral osteotomy. It’s more invasive and requires two doctors to work together to perform the surgery. Dr. Kim’s amazing staff was looking at scheduling for us in advance and noticed there was one appointment available with both doctors … the next week. So, we made another quick trip home and prepared for surgery. 

Because the surgeons knew the danger of falling and damaging the work they were about to do, Garrett would have a spica cast that would encompass his right leg and entire torso. I thought Garrett was going to jump through the ceiling. I calmed him down and promised to get him to a Dallas Mavericks game eventually, if he would just understand that the doctors needed to do this casting to give his hip the best chance of recovery without damage. The surgery went well, and Garrett actually went to school five days a week for five weeks in his spica cast without issues.

Now, we are in the “waiting phase” of this dreadful disease. We hope the surgeries are done. We’re just waiting to see progress and bone growth. We hope surgery and casting is over, but we will follow Dr. Kim’s lead and trust his judgement. We pray every day for strength, patience, guidance and healing. We know this is out of our hands, and we are not in control, but we have picked the best team and talent to help us manage this difficult period. We can’t wait to return to the activities he loves. I know I will cry buckets of tears the day he steps back on the basketball court. As another Perthes mom told me, “This is a disease you never knew about and never thought you’d deal with, but here we are, and at least there are people surrounding you to help.” 

This past summer, Garrett went to Camp Perthes in Minnesota! He got to meet others with Perthes and spend five days at camp doing kid things. The camp was started by Earl Cole, the winner of Survivor: Fiji. Earl Cole had Perthes as a child and used some of his winnings to start Perthes camp. He’s an example of someone who went through this disease, and he wants to help others do the same. And Earl Cole was raised in Kansas City, Kan—-small world! Garrett had a wonderful time spending time with other Perthes kids, enjoying activities like canoeing and rope courses.

Garrett started beekeeping with his dad during the pandemic.  He was in first grade, and he has his own Facebook page where he captured his beekeeping adventures.  We plan to get back to his Itty Bitty Beekeeper page and keep chronicling his adventures when he is released from treatment. His page is here: https://www.facebook.com/ittybittybeekeeper. 

Right now, with Perthes disease, we allow him way more video game time than we want. However, it keeps him social and interacting with kids on the weekends when he would normally be at a sports practice or outing.  Once we get released from treatment, we will encourage him to return to his beloved sports.  He told him that his focus, when healed, is to become the best basketball player he can be.

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US. 

Groundbreaking Preclinical Study of Perthes Disease

Groundbreaking Preclinical Study of Perthes Disease

by | Nov 3, 2023 | Research & Innovation

Our research team is working to provide a new treatment method for teenage and adolescent patients who are diagnosed with Legg-Calve-Perthes disease.
 
In this groundbreaking preclinical study of Perthes disease, UT Southwestern Medical Center professor of Orthopaedic Surgery Harry Kim, M.D., M.S., et al., discovered a new effective method to speed up and improve healing of the dead bone using a minimally invasive biomaterial. Currently, there is no effective treatment for teenagers and adolescents who develop Perthes disease/femoral head bone death. This new treatment consists of injecting a growth factor, BMP2, within a delivery agent, hydrogel. This allowed for rapid and consistent healing of the dead bone.

Published September 2023 in npj Regenerative Medicine. Read the complete study.

Share Your Story: Exceptional Care

Share Your Story: Exceptional Care

by | Jun 16, 2023 | Hip Disorders

Meet Sam, a patient who is treated by our experts in the Center for Excellence in Hip. Sam and Dr. Kim have formed a special bond through the years, as Sam was just 9 years old when he first became Dr. Kim’s patient. Sam has a childhood disorder of the hip called Legg-Calvé-Perthes disease, also known as Perthes disease.

Perthes is a condition in which a child’s hip joint is abnormal, and the blood supply to the head of the thighbone is temporarily stopped. Perthes is uncommon — approximately five to 10 children per 100,000 will be diagnosed each year — and it more commonly affects boys — one in 760 boys.

Nonsurgical treatments might include reducing physical activity and weightbearing on the affected legs using crutches, wheelchairs, casting and/or bracing. In Sam’s case, a surgery called an osteotomy was necessary. Surgical treatments for Perthes might include pelvic or femoral osteotomy, a process that reorients the pelvis or femur. In older children, another treatment option is to make bone channels to speed up healing and to inject bone marrow stem cells.

Perthes disease is a very uncommon condition that few doctors have experience in diagnosing and treating. It is important for parents to find a pediatric orthopedic specialist with a special interest in Perthes disease that cares for children with the condition regularly. 
 
Under the direction of Harry Kim, M.D., M.S., researchers in our Center for Excellence in Hip are dedicated to studying the progression of Perthes and other hip conditions, in kids just like Sam. Scottish Rite for Children is the leading center for the International Perthes Study Group (IPSG). 

IPSG includes more than 50 pediatric orthopedic surgeons and researchers from 10 different countries who are dedicated to improving the care of patients with Perthes disease. Their research provides important insight into this condition and will lead to the development of new treatment methods. As a long-time patient at Scottish Rite, Sam also participated in clinical research studies and understands the impact of quality patient care and the importance of research on a patient’s life.
 
It’s been a couple of years since your last surgery. How are you doing?  
I am currently in high school, and in the summer, I work as a lifeguard at our local pool. I think my life is pretty normal. My friends understand it can sometimes hurt when I walk for too long, so I use my bike to ride when my friends are walking, or we all take the golf cart. 
 
Can you talk about your connection with Dr. Kim?  
Dr. Kim and his staff have always explained everything to me in ways that I can understand. As a teenager, they talk to me about my disease and include me in everything. I really appreciate the effort they make to keep me involved in my care.
 
Do you have any specific memories about your time spent at Scottish Rite? 
Scottish Rite helped me stay active when I couldn’t walk. I learned how to do special stretches and started doing activities that allowed me to stay active and strong during treatment. I’m thankful I was able to keep moving, and I continue to swim and play sled hockey. Because of the treatment I received from Scottish Rite, I can walk, hike, play and have fun with my friends! 
 
Also, when I had my different surgeries, I loved spending time in the Child Life Playroom. Everyone was really nice and helped make things seem less scary. 

What would you tell patients and families thinking about participating in research at Scottish Rite? 
Do it! It is the best decision you can make! 
 
What are your plans for your future? 
I am on my school’s robotics team. I want to be an engineer. 

Can you talk about your overall experience at Scottish Rite? 
Sam’s mom, Nerissa – I have learned that the Scottish Rite will take care of you. Sam is inspiring others in the sport of sled hockey and staying active in a sport he loves because of Scottish Rite! Sam is actually my second child to benefit from Scottish Rite. My daughter Meredith went through the Take Flight program and graduated high school with an incredible GPA! None of this would be possible without Scottish Rite!

I feel incredibly fortunate to have Dr. Kim as my son’s doctor. Not only does he provide exceptional medical care for my son’s bone disease, but he also goes above and beyond.

One aspect that truly sets Dr. Kim and his staff apart is their commitment to attending Camp Perthes every year. This camp serves as a wonderful platform for encouragement, not only for Dr. Kim’s patients and parents, but also for everyone in attendance. It’s truly heartwarming to see a medical professional and team take the time to support and uplift individuals facing challenges.

The care and support we have received from Dr. Kim and his staff have been outstanding. They are an incredibly caring and supportive group of professionals who genuinely understand the difficulties that come with dealing with something hard in life. Their compassionate nature and dedication make a world of difference in our journey.

Dr. Kim’s expertise in treating my son’s bone disease is exceptional. He and the team consistently ensure that we understand the treatment options available and take the time to answer all our questions with patience and clarity. His approach instills confidence and trust, which is invaluable in such a challenging situation.

Scottish Rite for Children is equally remarkable. Everyone is friendly, attentive and always ready to lend a helping. I cannot recommend Dr. Kim and his team highly enough. If you are looking for a doctor who genuinely cares and supports you through difficult times, Dr. Kim is the one to trust.

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

Share Your Story: Cambryn Mannos – Redefining Myself

Share Your Story: Cambryn Mannos – Redefining Myself

by | Jan 12, 2023 | Hip Disorders

Blog written by Cambryn, and Cambryn’s mom, Amy.

Go back a year and you could find me, Cambryn, age 9, training with the best team and best coaches in all of New Mexico. My sport is gymnastics — the sport of all sports that defines toughness, perseverance and dedication. Winning competition after competition, I was defined as the best in my age group, hardworking, fearless, fireball, hotshot and destined to be counted among some great gymnasts. I was born into gymnastics, raised at Gold Cup Gymnastics School and the true definition of a “gym rat” with two older siblings competing. The gym is where you could find me all day, every day! Until the day it all came crashing down. It began with hip pain surging with every landing and movement in any backwards motion, including back walkovers, back tucks, back handsprings and back layouts.

My ability and stability were gone, just like that. I visited my orthopedic doctor right away at the request of my head coach, and on the X-ray, the doctor saw a fracture on the head of my left femur. An MRI was ordered, and while waiting, my ability to walk was gone by Christmas Eve. My MRI was now on stat order, and BAM, with all its glory, my MRI lit up black spaces through the head of the femur, showing avascular necrosis and Legg-Calve-Perthes disease, big words that I did not understand.

I struggled to find words to define my thoughts. I was referred to another orthopedic doctor in pediatrics, and “wait and see” was the advice. Then, my hip collapsed. All that I was and all that I thought I could be vanished, my definition of myself was gone. I lost it all! And yet again, “wait and see” was the approach. Now I needed a wheelchair, except after three months, I was still on a waitlist to get a wheelchair. 

Nothing seemed to happen but waiting, and I could see nothing in my future to be but that same blackness or death of what I was and what I could be. Gymnasts don’t “wait and see,” they are proactive and always in a constant state of motion. This is where my redefining journey begins with Scottish Rite for Children. With help from my teammate’s dad, who is a doctor, we found Dr. Harry Kim and his nurse Ms. Kristen. Their knowledge and dedication are a priceless need for us Perthes kids. They gave light to the blackness I saw because they had a game plan! 

Now, the beginning of the fight to redefine myself is not my proudest moments. I have had to do some soul-searching and letting go of a lot of pride and previous definitions of myself to build the “Perthes” me. Because at first, I freaked out at Dr. Kim. “He wants what? Six weeks in a huge cast? Nope, not doing that,” was my response. Yet, this summer, I did the tenotomy and petri casting, and I survived and even thrived with some new adventures. Dr. Kim is amazing, kind, patient and willing to fight my battle with me. Because of him, I know that Scottish Rite for Children is the place for me to get better and be a part of something bigger. You become family at Scottish Rite. I gained family. My care each time I go has been top of the line care. It’s worth the 1,400-mile trip to see my Scottish Rite family and to belong to something big, progressive and healing. 

Today, I find myself in stage 3 of Perthes disease, rebuilding new bone and redefining myself in all that I lost and in all that I have gained. I can grieve what I lost, and I can work hard to regain most of what was lost, but mostly I can seek moments that empower myself so I can empower others. I recently took photos for gymnastics. At first, I was embarrassed at the thought of gymnastics photos with a wheelchair. But the photographer, Kevin Lange, helped me see a bigger picture. I embrace Perthes disease because it is a part of me now, and I can’t change that, but I can choose what I do with it. I choose to find joy and strength in my Perthes journey. To me, Scottish Rite means the chance to regain and redefine myself! It means a new family of people who care about my health. It means everything to my future self who cannot fight this battle alone.

Thank you, Dr. Kim and Ms. Kristen, for your time and energy, for your dedication and expertise. 

Other than gymnastics, I enjoy rock climbing, math, animals, bike riding, hiking and art.

Photo Credits to Kevin Lange

 

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.

Brock’s Brigade – Fighting Perthes Step by Step

Brock’s Brigade – Fighting Perthes Step by Step

by | Nov 7, 2022 | Hip Disorders

Cover story previously published in Rite Up, 2022 – Issue 3.

by Kristi Shewmaker
Kickball, wiffle ball, four square, taking hikes and riding bikes are a few of the activities 10-year old Brock, of Lee’s Summit, Missouri, enjoys. But, his first love is baseball.
 
“Baseball is his world,” his mother, Rachel, says. “He has played competitive baseball since he was 4.” In the spring of 2021, Brock played shortstop for a local team called the Baseknocks until midseason when he was diagnosed with Legg-Calvé-Perthes disease (Perthes), a rare childhood hip disorder, that temporarily took him out of the game and into a wheelchair.
 
Brock’s symptoms began with a pain in his groin. Then, he started to limp. “It was really bad,” Rachel says. “He couldn’t not limp.” She took Brock to visit his pediatrician who examined him but found nothing obvious like a broken bone. The doctor suggested trying physical therapy. “We thought maybe he had pulled a muscle,” Rachel says. After almost two months of physical therapy, Brock was still limping, and Rachel noticed that the thigh muscle in his right leg was two inches smaller than the thigh muscle in his left leg. “That was pretty alarming to me,” Rachel says. “I thought, ‘There’s something going on. It’s not just a pulled muscle.’” Later, an X-ray revealed that Brock had Perthes, a disease unknown to the family.
 
STEP 1: FINDING AN EXPERT

Perthes disease is a hip disorder that primarily affects the ball of the hip joint. The ball, or femoral head, is the upper part of the thighbone, or femur. The femoral head is normally round and fits inside the round socket of the pelvis. Perthes disease occurs when part or all of the femoral head loses blood supply. Without adequate blood flow, the femoral head bone dies. Over time, the body removes the dead bone and replaces it, initially, with softer bone. This bone is weaker, and the femoral head is more likely to collapse into a flattened position leading to deformity of the hip.
 
Perthes is rare, affecting approximately 15 children per 100,000 and is more common in boys than in girls, with a ratio of 5:1. The cause of Perthes is unknown, and currently, there is no cure. It typically occurs in children between 4 to 8 years old. Brock was diagnosed just before he turned 9.
 
“When you’re diagnosed with something that’s rare, and there’s not a ton of information, you feel like it’s a death sentence,” Rachel says. “I remember crying for the first three or four days because there were no answers, and no doctor could get us in. It was like a big, giant question mark.”
Rachel asked a friend, a physical therapist in nearby Kansas City, if she could recommend someone. Her friend said, “If it were my child, I would go see Dr. Kim at Scottish Rite.”
 
“Late at night, I sent a message to Scottish Rite and received a call the next day,” Rachel says. “Dr. Kim had an opening the day that we were going to be driving back through Dallas after a spring break trip to Galveston. It was clear that it was meant to be.”
 
STEP 2: GETTING EXEMPLARY CARE

A leading expert in Perthes disease, Harry Kim, M.D., M.S., is a pediatric orthopedic surgeon and director of the Center for Excellence in Hip at Scottish Rite for Children. Dr. Kim met with Brock and his family and confirmed the diagnosis.
 
“A perfusion MRI shows how much of the femoral head has blood flow,” Dr. Kim says. “Normally, it should be 100%. In Brock’s case, about 90% had no blood flow, which caused about 90% of his bone to die. His case was severe based on the amount of bone death and his age.”
 
Children ages 6 and younger tend to have better outcomes from Perthes disease because they have greater potential for developing new bone. Also, if half or more of the femoral head dies, the potential for regrowth without deformity is lower.
 
During the family’s initial visits, Dr. Kim and his team, including registered nurse Kristen Odom, explained the disease and Brock’s specific case and outlined the treatment options.
 
“When we came out of that first appointment, Brock said the best thing was that Dr. Kim looked at him, talked to him and asked him questions about how he was feeling, rather than just talking to me,” Rachel says. “It’s so important when you’re scared and uncertain, especially when you’re a kid, and the doctor makes you feel like you truly matter.”
 
After returning to Missouri, Rachel had more questions as the family processed the information. “Kristen spent an hour and 45 minutes on the phone with me,” Rachel says. “When I hung up, I told my husband we won’t ever go anywhere else. That kind of care simply doesn’t exist. When you’re dealing with a rare disease and your baby, that care is priceless.”
 
In May of 2021, Dr. Kim performed surgery on Brock’s right hip. “Brock presented with a mild collapse or deformity of the femoral head,” Dr. Kim says. “Without treatment, it would have degraded much further. We intervened before further collapse occurred.”
 
During the procedure, Dr. Kim cut the bone and positioned it so that he could tuck the femoral head securely into the hip socket. This containment procedure allowed the blood flow to come back naturally. He stabilized the bone with a metal implant that was removed in a later surgery. Over time, the body would remove the dead bone and generate new bone. To ensure healing, Dr. Kim prescribed a controlled weightbearing regimen, meaning Brock was unable to put any weight on his leg.
 
“He couldn’t play baseball, couldn’t run up the street to a friend’s house, couldn’t ride his bike,” Rachel says. “He went to school in a wheelchair, and kids stared at him and asked questions. We thought about ADA (Americans with Disabilities Act) accommodations everywhere we went. We had to rethink everything.”
 
STEP 3: FIGHTING FOR OTHERS

Despite all of these changes, Brock has taken it in stride. “He is my hero,” Rachel says. “Has he complained? Absolutely. Did he hate certain minutes, days and weeks? 100%. But overall, he was relieved to have an answer and a plan and no more pain. He has handled it better than I could have ever imagined.”
 
Last Christmas, Brock wanted to express his gratitude by designing and selling T-shirts as a fundraiser for Scottish Rite. “We called ourselves ‘Brock’s Brigade,’” Rachel says, “and put ‘His Fight Is My Fight’ on the front.” When the family traveled to Dallas for Brock’s second surgery in December, they presented a check for $1,000 to his care team. “Dr. Kim has really made an impression on Brock,” Rachel says. “This was Brock’s way of giving a little back so that hopefully it’s easier for kids in the future.”
 
“This family is so special,” Dr. Kim says. “They have gone through such difficulty, yet they want to help others improve their knowledge and support research. They are not just thinking about themselves but thinking about others.”
 
For more than a year, Brock completed a series of progressive exercises to restore muscle strength and range of motion. He went from using a wheelchair to bearing more and more weight on his crutches. In August, the answer the family had been holding their breath for finally came. Brock was given the all clear to walk.
 
“After we got the A-OK, Brock took his first walk with his dad and his brother,” Rachel says. “They do these “football walks” where his dad throws the football, and they go up ahead and catch it. They got to do that for the first time in a long time.”
 
Brock is especially excited for the day when he is cleared to play the sport he loves most. “Dr. Kim felt confident that Brock would be able to start winter practices and be 100% for spring baseball, which has been his goal from day one,” Rachel says. For now, Brock is easing back into his active life. He walks his dog, Pepper, and plays on the playground with his friends.
 
“The Scottish Rite team has been the biggest blessing to our family,” Rachel says. “Even being eight hours away and having to drive and fly multiple times throughout the last 18 months, I would drive four days to get to Scottish Rite. Our experience has been nothing short of amazing.”