Price Transparency
Leap of Faith: Dane’s Daring Journey of Overcoming Perthes Disease

Leap of Faith: Dane’s Daring Journey of Overcoming Perthes Disease

by | Sep 27, 2024 | Hip Disorders

It is always fulfilling to learn about the impact Scottish Rite for Children has on patients beyond treatment. Recently, former patient Dane Hammack felt nostalgic about the care he received at Scottish Rite for Legg-Calvé-Perthes disease, also known as Perthes. Dane says his family re-located from Paris, Texas to Dallas so he could receive care here in the 1980s.

“My favorite thing about my time at Scottish Rite was the friends and staff,” Dane says. “I remember sharing a room with a kid who had a spine disorder. We would shoot ice at each other through bendy straws while we were bed-ridden.” Dane even remembers when the Dallas Cowboys cheerleaders visited!

Perthes disease is rare and is more commonly seen in boys. Approximately 10 children per 100,000 will be diagnosed each year. Our experts in the Center for Excellence in Hip are dedicated to uncovering the mysteries of Perthes disease, consistently advancing treatment methods through clinical studies. Even now, few doctors have experience in diagnosing and treating Perthes disease. Scottish Rite staff provide individualized and comprehensive care for the whole child’s physical and mental state – an aspect that Dane reflects positively on.

“The staff never felt sorry of my condition, which made me feel normal in a way,” Dane says. “Through the surgery and braces, I was able to get through it all.”

After completing treatment at Scottish Rite, Dane says he was able to enjoy his childhood to the fullest. He was very active and played on his high school’s football and wrestling teams.

“I moved to San Diego to be with my dad after treatment,” Dane says. “No one there knew me as the kid with the cast. I had the sense that I could do whatever I wanted to do.”

At age 20, Dane went to a Dallas military base to enlist in the U.S. Army. For each branch of military service, a series of examinations are conducted to see if the applicant meets the branch’s requirements. During Dane’s physical, his surgery scar from Perthes disease treatment was seen by the doctor.

“The doctor did an X-ray on my hip, and even I was in shock,” Dane says. “I was told I couldn’t enlist, because of the Perthes disease and its damage to my right hip. All I was asking for was to be given a fair shot.”

Dane decided to reach out to his local Senator, Sen. Phil Gramm at the time, and sent a letter that described his situation. “I handwrote that letter with pencil,” Dane says. “I just wanted to get going!” Dane’s letter to Gramm got his case moving, and his eligibility to enlist would be determined by one final task – run a timed 10K.

“My mother always said everything is only temporary and nothing lasts forever,” Dane says. “The worst times you will ever have won’t last forever.” After two years of challenges, Dane ran a successful time and finally enlisted into the U.S. Army.

For 12 years, Dane was in the U.S. Army Special Operations Command (Airborne) as a psychological operations specialist and then a jumpmaster. He travelled to many countries, such as Malawi, Namibia, Colombia and Ecuador to name a few. As a jumpmaster, Dane oversaw the safety checks for parachutes and was the first one to jump out of the plane. However, he sustained a back injury after a parachute accident and decided to leave the Army for life closer to family.

Dane applied to the U.S. Border Patrol in Arizona at the age of 32 and is still serving as a U.S. Border Patrol agent.

“Thinking back to what helped me was the people who supported me,” Dane says. “Thank you does not come close to expressing what Scottish Rite has offered me.”

Our patients’ stories are a timeless gift, reminding us why we serve and what an honor it is to give children back their childhood. When you come to Scottish Rite, you truly become a member of our forever family!

Do you have a story? We want to hear it! Share your story with us.

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. 

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.

Treating Perthes Disease

Treating Perthes Disease

by | May 18, 2022 | Hip Disorders

Perthes disease, also known as Legg-Calvé-Perthes disease, is a childhood disorder of the hip. The disease affects the ball portion of the hip joint, known as the femoral head. Perthes is uncommon — approximately five to 10 children per 100,000 will be diagnosed each year — and it more commonly affects boys — 1 in 760 boys. Here are some interesting facts about this pediatric hip condition.

What Happens to the Hips in Perthes Disease
In a normal hip joint, the round femoral head of your femur fits perfectly into the round socket of the pelvis. Perthes disease interrupts the blood flow to the femoral head, causing all or part of it to die due to the lack of blood. The bone death is medically referred to as osteonecrosis.

Once the bone dies, the femoral head is more prone to breakage and heals poorly in older children. As a result, the pressure and weight on the bone from normal rigorous activities can cause the round portion to become flat over few months to a year after the diagnosis. For one to two years after bone death occurs, new bone gradually begins to fill in the areas where the body has removed the dead bone.

The Cause of Perthes Is Still Unknown
While we know what happens to the hip to alter the round shape of the femoral head, we still don’t know what causes the precipitating interruption of blood flow. We also know that Perthes is not heritable, since less than five percent of the patients have a family history of the disease. However, some other heritable hip conditions or blood disorder can mimic Perthes, such as inherited bone dysplasia like multiple epiphyseal dysplasia and sickle cell disease. History of taking corticosteroid for treatment of asthma, inflammatory conditions or cancer can also produce bone necrosis that mimics Perthes.

Diagnosing Perthes Disease
Because so many other diseases can mimic the symptoms of Perthes, it is known as a disease of exclusion. Doctors will rule out other conditions by taking a careful medical history and performing a physical exam. The physician will typically ask about the following diseases to rule them out:

  • Family history of hip disorders or early joint replacement
  • Steroid use, such as for asthma
  • Prior hip surgeries
  • History of sickle cell disease
  • History of hip infection
  • History of endocrine or clotting disorders

To confirm a potential Perthes diagnosis, doctors will perform X-rays of the hips. If an X-ray is taken too soon after symptoms have begun, it may appear normal. In that case, physicians can order a very sensitive diagnostic test called perfusion MRI if they still suspect Perthes.

Treatments and Complications
The body will naturally remove and replace the dead bone of the femoral head with new bone, so, to some extent, Perthes is self-healing. However, the healing process may be slow and even after healing has taken place, the femoral head may not return to its original round shape. When that fails to happen, patients may experience long-term complications, such as pain, stiffness and arthritis later in life.

Until the healing phase is complete, nonsurgical treatments might include crutches, wheelchairs, casting and/or bracing, and reduced physical activity. Surgical treatments might include pelvic or femoral osteotomy a process that re-orient 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.

While Perthes is in some ways self-healing, femoral heads sometimes don’t heal properly but there are other treatment options are available. With the interventions we have today and new treatment knowledge about the condition, those with Perthes can usually return to daily activities and sports activities without problems.

Learn more about the various hip conditions our experts treat.

NBC DFW: 8-Year-Old Battling Rare Disease Returns to Dallas for Treatment, Is Special Guest at Cowboys Game

NBC DFW: 8-Year-Old Battling Rare Disease Returns to Dallas for Treatment, Is Special Guest at Cowboys Game

by | Aug 27, 2019 | Hip Disorders, Press Coverage

Gavin Miller of Charlotte, Michigan visited Texas Scottish Rite Hospital for Children to see Dr. Harry Kim, the Director for Center for Excellence in Hip, for the ongoing treatment of his Perthes disease.

Miracle Flights, which provides children and their families free flights to distant and specialized care, flew Gavin and his mother to Dallas. Gavin was also able to see his “hometown hero” Cooper Rush with the Dallas Cowboys play in the team’s first preseason home game. Rush is also a native of Charlotte, Michigan and has followed Miller’s medical journey.

Watch NBC DFW’s feature or learn more about Perthes disease