Mom, when did you know that Shriver had an issue with his hip?

Shriver’s mom: I was watching my son at his first fall soccer practice and he was refusing to run. He had always loved sports and I had never seen him do anything like this and I reprimanded him for being rude to the coach.

The next day he went to a water park and said he could not climb the stairs to the slides as it was too painful in his right leg. This was very unusual for our 7 year old. I took him to the pediatrician the next day and they assured me it was growing pains. However, I still had concerns and asked for x-rays anyway. The radiologist at a general hospital said they were normal, but I requested that an orthopedist see them who immediately saw that he had Perthes and referred us to TSRHC.

We were referred to the hospital in August of 2010 and saw Dr. Rathjen who then referred us on to Dr. Kim. It was the first day of second grade for Shriver and he went to school on crutches. He followed a non -weight bearing protocol that year using crutches and a wheelchair. The following summer it was decided he wasn’t healing as well as we would hope and a femoral osteotomy was recommended. This was done in June and he was in a body cast from toe to chest until school started. He spent third grade in the wheelchair and on crutches continuing to maintain the non weight bearing status as he healed from that surgery and the hardware removal surgery later. At the start of 4th grade he was allowed to begin walking only, but no running, sports, jumping etc. The start of 5th grade we were encouraged to increase his activity to try to facilitate more healing. We go back soon to see if the last bit is filling in with good healthy bone.

Shriver, what’s it been like growing up with Perthes disease? What restrictions has it placed on you?

Shriver: Having Perthes is not fun. It stopped me from hanging out with my friends as much as I used to and from running around at recess. I could not play sports for almost 3 years. Sometimes I had to leave class to get medicine from the nurse. I am ready for it to be done.

Mom, what’s it been like raising Shriver during his Perthes treatment?

Shriver’s mom: Nobody wants to see their child hurting and isolated. When feeling positive, I always tried to remember that it was not a life threatening illness. When feeling down I worried about what he was missing out on, and worried that he would be in chronic pain as a young adult after this was all finished. This fear made me very focused on following the physician’s treatment plan. I think one of the hardest parts is the length of the process and not knowing how much will have changed at each appointment. Sometimes there is no real change. He wants to know it will someday be over and so does the rest of the world, but I am aware that while It will “end”, we don’t know for sure what his outcome will be.

How has the hospital staff helped you deal with the treatment?

Shriver’s mom: The physicians and staff have been amazing at explaining things to all of us. They showed me the changes in his hip at each visit. They gave gentle reminders that it is a long road and ensured that our expectations were always realistic. My son loves to go to the visits there as the staff and volunteers make him feel like a cherished celebrity. I will forever be grateful for all that made him feel so at home and so valued. He describes it as happy place to go.

What limitations did Perthes disease place on Shriver? How has his attitude about Perthes been?

Shriver’s mom: Shriver was non weight bearing for 2 full years. This prevented him from playing sports with his friends, participating at recess, going to parties etc. To a 7-10 year old it was pretty stressful. The first year it was sort of a novelty. The crutches were cool. The other kids wanted to “help”. Our community was wonderfully supportive and tried to include him, but the second year he was much more isolated and depressed. He had two surgeries and could not be as active. He is hopefully not permanently disabled, but certainly felt that way during this time period. We found the Dallas Junior Wheelchair Mavs that second year which was a real blessing. He was able to exercise and compete in something again. He is still playing as he transitions back into more activity. He has learned there that he has more mobility than many and to be open minded about all different kinds of people. Overall his attitude in the beginning was pretty good. He just wanted to feel better. It got harder with time and he just wants it to be over. We are now in the 4th year of it.

He is so much better, and doesn’t really feel disabled anymore, but also doesn’t feel fully abled either as he is just beginning to be able to run again. It is a transition and he is challenged by the work of getting back in shape. He plays and loves little league baseball and worries that he is too slow. Thankfully he can hit and in reality is doing great. He is out there again and he is trying.

All we want for him is to be able to enjoy his childhood and have a healthy hip into adulthood.

Shriver, what kinds of stuff do you like to do now? What do you want to be when you grow up?

Shriver: I love to play baseball now and be with my friends. I like to draw and be with animals. I love science and I am on the science and math teams. I want to be an orthopedic surgeon when I grow up and help kids.

What can Shriver do now that he couldn’t do before? How has the hospital changed his life?

Shriver’s mom: Shriver is now walking and beginning to run. He is getting back in shape and getting to be more interactive with his peers. While it is not fully healed, his hip looks great considering. If we had not found the diagnosis and received such good early care at TSRHC, I don’t think sports would be an option for him. I think he would be in pain just walking around the house and frustrated with daily life activities. We are hopeful that he will be able to do all he wants to do and will have a healthy hip at least through young adulthood. Mostly the hospital has made what could have been a very trying 4 years comfortable and full of hope.

What is your understanding of Shriver’s prognosis?

Shriver’s mom: My son’s hip is not the same as it would have been before Perthes. His leg is shorter from his osteotomy, the angles are different, and it is just not the same hip. His hip is still a good hip though. We will probably choose to avoid high impact activities, but he can play many sports and exercise for health. He will not sit in class in pain. He may need a hip replacement at an earlier age than my other son, but it will be much later than I first imagined. TSRHC has given us great care on living now, and protecting his hip for good living in his future.