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

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

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.

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The Growing Athlete’s Hip: How to Prevent Problems Today and Tomorrow

The Growing Athlete’s Hip: How to Prevent Problems Today and Tomorrow

Download a PDF of this summary.

In this program, our pediatric orthopedic and sports medicine experts described how the skeletal development of the hip is affected by repetitive and extreme movements inherent to athletic activity. The changes, in some cases, can be permanent. Keep reading to learn what we know about preventing irreversible changes and treating symptoms of these sport-related hip conditions.

Apophysitis and Apophyseal Fractures in the Hip and Pelvis

Apophysis is a normal bony outgrowth that arises from secondary ossification centers. The bone fragment will ultimately fuse with the primary bone. The apophysis contributes more to the shape of a bone than the longitudinal growth. Until the ossification center fuses, also referred to as the point at which the “growth plate closes,” the tendon or ligament attached to the apophysis can pull and cause pain in the soft cartilage in the apophysis.

Hip and pelvic apophyses that are vulnerable to acute or overuse injuries are located at the ischial tuberosity, the iliac crest, the anterior superior iliac spine (ASIS) and anterior inferior iliac spine (AIIS). An apophyseal avulsion fracture. An anterior-posterior view of the pelvis is helpful when evaluating complaints in the pelvis so contralateral comparison can be made.
Risk factors for injury includes:

  • Tight muscles and muscle groups
  • Early in the sports season
    • Change in activity from sedentary to active
    • Sudden increase in intensity or duration of training or competition
  • Ignoring activity-related pain
  • Minimal recovery from workouts
    • Year-round training
    • Lack of cross-training
    • Overtraining

Treatment for these conditions is most often nonoperative and is centered around protecting the area involved. Rest, protected weight-bearing, gentle passive ROM and gradual return to play are necessary elements of the plan. Healing and symptom resolution may take 12 weeks or more and radiographic healing is not required prior to returning to sports.

Internal and External Snapping Hip

Athletes may report “popping” in the hip.

If you can see it, it’s likely coxa sultans externus, external snapping hip. This is a condition of the iliotibial band popping over the greater trochanter on the lateral side of the femur. Runners may complain of this when running or walking, and they may describe that it “pops in and out.”

If you can hear it, it’s likely coxa sultans internus, internal snapping hip. This occurs when the iliopsoas muscle, deep in the groin, causes painful popping. This condition is often seen in dancers and tumblers. Treatment includes hip flexor stretching and activity modification.

Femoroacetabular Impingement (FAI)

An overuse injury seen in adolescent and young adult athletes in the hip can be caused by changes in the shape of the femoral head-neck junction (Cam-type) or the acetabulum (Pincer-type). These changes can cause pinching and tearing of the labrum, the soft tissue surrounding the acetabulum that acts to deepen the socket. Early injury from impingement can cause premature hip arthritis. Therefore, this condition is continuing to get more attention with the goal to prevent deformity and consequences.

How does a Cam-type deformity develop?
The femoral head collides prematurely with the acetabulum. The impact causes a change in the shape of the head from being spherical to being more “cam” shaped, or oblong. These may develop secondary to another medical condition in the developing hip, such as:

  1. Slipped capital femoral epiphysis (SCFE) is seen in approximately one in 10,000 may occur and result in avascular necrosis of the femoral head.
  2. Perthes disease – rare condition affecting blood flow in the hip and causes deformity.
  3. Trauma or fracture

In athletes, there is not a primary condition like those listed above. Therefore, idiopathic Cam deformities have been identified in teenage athletes who participate in soccer and other sports. Younger players studied do not show this condition, so the window of opportunity and the exacerbating activity are being studied more closely. Shearing forces may be occurring at the physis to protect the bone, but ultimately may be causing changes in the growth plate and therefore the shape of the femoral head.

Can this be prevented?

Early conversations are looking at the parallel occurrence in the shoulder and elbow in baseball players. Evaluation of the dosage of activity, such as pitch counts in baseball, have been implemented to preserve the anatomy and improve performance in elite athletes. For now, working on proper mechanics and activity modification in adolescence may be our best tools to prevent this deformity.

Considerations and Components of a Hip Injury Prevention Program

Factors that must be considered to prevent hip injuries in adolescent athletes include:

  • Open growth plates
  • Peak height velocity (PHV)
  • High volume of training particularly with loading in rotational and axial movements
  • Sport-specific end range of motion demands
  • Explosive and eccentric demands

Modifiable factors may include:

  • Muscle imbalances
  • Muscle weakness
  • Inflexibility
  • Poor technique
  • Sport-acquired deficiencies
  • Joint instability
  • Overtraining

Five Domains of Injury Prevention Strategies of the Hip

  1. Training Load Management
    Higher incidence of athletic hip pain found with athletes who specialize in a single sport before high school and participate in regular training at earlier ages and four times per week before the age of 12. Recommendations include sampling a variety of sports rather than specializing, monitoring workload, neuromuscular training programs and taking rest breaks from sport (two to three nonconsecutive months/year).
  2. Hip Mobility During Rapid Growth
    Through stretching, dynamic warm-up and eccentric training, hip tissues can stay flexible. Progression of eccentric training can improve the length-tension curve to improve performance and resist injuries.
  3. Motor Control and Stability
    Hypermobility and poor motor control need to be addressed with strategies that improve core stability and teach foundational movement patterns for sport-related movements, such as jumping and landing.
  4. Strength to Improve Imbalances & Specificity
    Once mobility and control are addressed, strengthening can occur. Eccentric adductor & abductor strength can be improved by combining activities, such as the Copenhagen plank and a Nordic Hamstring exercise. Looking for sport-specific strengthening tasks.
  5. Sport-Specific Movement Mechanics
    The culmination of these strategies is executing the sport-specific movement patterns with all of the fundamental movement competence and technical accuracy to ensure safety. Whether the sport demands jumping and landing on a court, changing direction at high speeds on the ice or holding extreme postures on a balance beam, the steps follow a standard pattern.

Implementing Hip Injury Prevention Programs

With confidence that many of these elements are modifiable due to neural plasticity of youth athletes before and during growth, making an effort to prevent injuries is appropriate. Research will continue to define the right and wrong approaches; however, we have some tips that are generally accepted. To avoid detraining, it is recommended to perform activities two to three times per week, approximately 20 min duration, up to 60 min for at least six weeks. It is important to implement it prior to the beginning of a season. Qualified instructors and supervision for continued implementation of the proper techniques are crucial elements of a safe and successful program.

Learn more about hip health in dancers.

This is a summary of a presentation in a monthly series for medical professionals called Coffee, Kids and Sports Medicine. Through events like these, Scottish Rite for Children experts share their experience and knowledge with others to ensure young and growing athletes are getting the best care in every environment.

Share Your Story: Cambryn Mannos – Redefining Myself

Share Your Story: Cambryn Mannos – Redefining Myself

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

 

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Preventing Hip Problems for Your Baby

Preventing Hip Problems for Your Baby

Newborns need a lot of care, and that means plenty of visits to the pediatrician during the early months. One thing your pediatrician will carefully screen for is developmental dysplasia of the hip (DDH), a common condition that young babies are especially susceptible to. Learn more about DDH, its risk factors, tips on how to prevent the condition and guidelines on how to spot hip-safe baby accessories from our experts.

Could my baby have DDH?
DDH occurs when there is inadequate coverage of the ball by the socket or there is a dislocation of the hip (the ball is completely outside the socket). The cause of the shallow socket is complex, but it’s a gradual process that occurs during infancy and does not happen at a specific moment.

  •  Many different factors contribute to DDH, including genetics, as children with a family history of the hip condition are more likely to have DDH than children who do not have a family history.
  • Babies who were breech during the third trimester and girls are also more likely to be diagnosed with DDH.
  • Studies have shown that if a baby is swaddled incorrectly, it could cause DDH.

At the Center for Excellence in Hip at Scottish Rite for Children, we typically treat DDH using a Pavlik harness, which keeps the hips gently flexed and separated in the right position for encourage normal development of the hip joint. After treatment with a Pavlik harness, we use physical exams, ultrasound and X-rays to monitor growth and confirm the hip joint is developing properly. Even when starting with a dislocated hip, most infants require no further orthopedic treatment after wearing a Pavlik harness.

What other factors could cause my baby to have DDH?
While developmental dysplasia of the hip (DDH) cannot always be prevented, there are some things to look out for as you care for your baby to avoid causing abnormal stress and pressures to the hip that could lead to future problems.

Swaddle Safely
Many parents choose to swaddle their newborn infants. Swaddling involves wrapping a blanket around the upper body of the baby to create a snug fit so that the baby feels secure, but if done improperly, swaddling may lead to DDH. When swaddling your baby, be sure of the following to prevent hip dysplasia and other hip issues:

  • A parent/guardian should wrap the blanket around the upper part of the body while keeping the legs free to move and kick.  The baby should be able to flex their hips freely.
  • If the legs are wrapped tightly with the hips in an extended position, it could affect hip development and increase the risk of dysplasia.
  • In young babies, developing hips are very moldable and growing rapidly. Keeping the legs free while in a swaddle allows the baby’s hips to develop normally.
  • To avoid swaddling incorrectly, consider using a certified hip-safe swaddle that does not restrict the baby’s legs.

Watch our Proper Swaddling video:

Babywear Properly
Babywearing has been practiced for generations, but a baby’s improper hip position when babywearing could cause problems, while proper placement can contribute to natural hip development. 

  • The “M-position” is a natural clinging position for infants. In this position, the baby’s thighs spread around the parent’s torso with the hips flexed and the knees slightly higher than the buttocks with the thighs supported.
  • Babywearing with your baby facing inwards toward your chest may be better for hip development, especially in babies under six months of age.
  • By babywearing your infant in the correct position, you can promote healthy hip development.
  • Purchase a hip-healthy baby carrier that has been recognized as hip-safe for babywearing.

Shop Smart
When shopping for baby products such as baby carriers for babywearing or swaddles for sleeping, look for products that have been recognized as hip-safe by the International Hip Dysplasia Institute. Products that have been recognized by the organization promote proper hip placement. View the list of hip-healthy products: https://hipdysplasia.org/hip-healthy-products/.

  • Look for recognized hip-safe products.
  • Discuss best practices and recommended products with your pediatrician.
  • Always use products as instructed and ask your pediatrician for guidance if needed.
  • Do not use products that have been altered or damaged, as they may not work properly and could promote poor hip placement.
  • Limit time in baby seats that hold the legs in a fixed position.

“We know that the position of baby’s hips are held in infancy can have a dramatic impact on early hip development. We want to ensure they are not positioned in forced hip extension.”

– William Z. Morris, M.D.

 

At Scottish Rite for Children, our Center for Excellence in Hip has hips covered. We treat a wide array of hip conditions and disorders in patients of all ages. Hip health is important throughout your child’s life, and we’re here to help every step of the way. Learn more about our Center for Excellence in Hip and all of the conditions we treat.

Learn more about our Center for Excellence in Hip and all of the conditions we treat.

Treating Perthes Disease

Treating Perthes Disease

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.