Nathan's Perthes Journey
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In May of 2017, Nathan woke up complaining of leg pain. Knowing that children his age typically get growing pains, I just chalked it up to that. The following week, I noticed that he was limping on his right side. When I asked him what was wrong, he said that his leg hurt. I realized that he was only have pain in one leg. I decided to take him to Urgent Care that morning to rule out any serious injuries. The doctor could not find anything wrong with his x-rays, so he referred us to our pediatrician, who ordered lab results. Based on Nathan’s lab results, his ASO titer was double the norm and the doctor asked us if Nathan had strep in the past couple of weeks. I told her that he never complained of a sore throat and had a tonsillectomy when he was 5 years old. He was put on antibiotics right away. She also referred us to an orthopedic at All Children’s.
Based on the previous tests, he said that Nathan probably had transient synovitis in his right hip and he could take Ibuprofen for the pain. He said that if the pain did not go away within 2 weeks, we should see a rheumatologist because Nathan may have Juvenile Arthritis. Our pediatrician urged us to return to the orthopedic for another follow up. At that visit, the orthopedic told us there was nothing he could do, and again, we should see a rheumatologist. He never took x-rays to rule out anything even at our second visit.
After waiting another month, we finally got to see the rheumatologist. Based on the information he received, he thought Nathan probably had reactive arthritis. He prescribed a stronger pain medicine for Nathan to take for a month. He was so sure of his diagnosis, he had us come back after 5 weeks instead of the typical 4.
While we waited that month, Nathan continued to limp, and his right foot began to turn in. The pain medications were helping with the pain but not with his limp. After 2 months of blood tests, 3 different pain medicines, 1 visit to Urgent care, 2 visits to the pediatrician, 2 visits to an orthopedic, and 2 visits to rheumatology, Nathan was MISDIAGNOSED with Juvenile Idiopathic Arthritis. Something told me that this was not the right diagnosis because Nathan's limping became worse and his right foot was turning in when he walked. The rheumatologist referred us to physical therapy. We went to All Children's for a consult and then were told that it would take 3 weeks before we could start physical therapy.
After posting on Facebook what was going on with Nathan, a childhood friend of mine reached out to me and told me to contact Shriners. I called right away and had to wait another month to see a new orthopedic. At our first visit, Nathan was x-rayed. As soon as I saw the image come up, I knew it was Legg-Calve Perthes. Here’s a brief description of LCP: https://paleyinstitute.org/conditions/perthes-disease/
Since we caught it early, we started physical therapy twice a week. We began to see improvements after a few months with his range of motion and he was no longer limping. He was feeling better and we thought he was getting better. At each 4 month follow up, a new x-ray would be taken and we started to see that Nathan was in Stage 2 of the disease.
By April of 2018, our current orthopedic did not like Nathan’s x-rays and was leaning towards surgery. Nathan’s femoral head was beginning to collapse. I mentioned to another friend how Nathan was doing, and she said that I should look for a support group on Facebook. That night I found one and began to research and read what other parents were going through. I saw that there were 3 orthopedic specialists names that kept coming up, Dr. Paley (FL), Dr. Standard (MD), and Dr. Kim (TX). I saw that someone posted that Dr. Paley does free email consults. I wrote to him that night (Wednesday) and got a response 3 hours later around 10PM. I was shocked! He asked me to send Nathan’s x-rays to him. I told him that I would get it to him by that Friday. I did not get a response back until Sunday morning, Mother’s Day. It was not the news I was hoping for. He told me that he needed to see Nathan ASAP and that he would need surgery. He sent pictures of what my son’s surgery would be and a wave of emotions flooded me that morning.
The next morning, I spoke with his assistant and got an appointment for that Friday. Nathan and I made the 4-hour trip to West Palm Beach. Our appointment was at 3:30PM and we did not meet Dr. Paley until 7PM. I was warned ahead of time that I could be waiting hours before I met with him. A team came in at 7PM and Dr. Paley explained everything he emailed me the week before. Luckily, I was in a better place emotionally and had done a lot of research up until our appointment. He also mentioned other potential surgeries that Nathan may need throughout his life including a hip replacement by age 40. Nathan will be having surgery at the end of this month (May 2018). He will be in the hospital for about 4 days. We will stay at a local hotel for 14 days or so in West Palm Beach for physical therapy and post op appointment.
Perthes (LCP) is a long-term, complex disease. Each case is unique, and each outcome is not the same for everyone. We ask for your prayers and thoughts as our journey continues with Perthes.
The funds that we are raising are to help with out of pocket medical bills and housing expenses while in West Palm Beach.
Based on the previous tests, he said that Nathan probably had transient synovitis in his right hip and he could take Ibuprofen for the pain. He said that if the pain did not go away within 2 weeks, we should see a rheumatologist because Nathan may have Juvenile Arthritis. Our pediatrician urged us to return to the orthopedic for another follow up. At that visit, the orthopedic told us there was nothing he could do, and again, we should see a rheumatologist. He never took x-rays to rule out anything even at our second visit.
After waiting another month, we finally got to see the rheumatologist. Based on the information he received, he thought Nathan probably had reactive arthritis. He prescribed a stronger pain medicine for Nathan to take for a month. He was so sure of his diagnosis, he had us come back after 5 weeks instead of the typical 4.
While we waited that month, Nathan continued to limp, and his right foot began to turn in. The pain medications were helping with the pain but not with his limp. After 2 months of blood tests, 3 different pain medicines, 1 visit to Urgent care, 2 visits to the pediatrician, 2 visits to an orthopedic, and 2 visits to rheumatology, Nathan was MISDIAGNOSED with Juvenile Idiopathic Arthritis. Something told me that this was not the right diagnosis because Nathan's limping became worse and his right foot was turning in when he walked. The rheumatologist referred us to physical therapy. We went to All Children's for a consult and then were told that it would take 3 weeks before we could start physical therapy.
After posting on Facebook what was going on with Nathan, a childhood friend of mine reached out to me and told me to contact Shriners. I called right away and had to wait another month to see a new orthopedic. At our first visit, Nathan was x-rayed. As soon as I saw the image come up, I knew it was Legg-Calve Perthes. Here’s a brief description of LCP: https://paleyinstitute.org/conditions/perthes-disease/
Since we caught it early, we started physical therapy twice a week. We began to see improvements after a few months with his range of motion and he was no longer limping. He was feeling better and we thought he was getting better. At each 4 month follow up, a new x-ray would be taken and we started to see that Nathan was in Stage 2 of the disease.
By April of 2018, our current orthopedic did not like Nathan’s x-rays and was leaning towards surgery. Nathan’s femoral head was beginning to collapse. I mentioned to another friend how Nathan was doing, and she said that I should look for a support group on Facebook. That night I found one and began to research and read what other parents were going through. I saw that there were 3 orthopedic specialists names that kept coming up, Dr. Paley (FL), Dr. Standard (MD), and Dr. Kim (TX). I saw that someone posted that Dr. Paley does free email consults. I wrote to him that night (Wednesday) and got a response 3 hours later around 10PM. I was shocked! He asked me to send Nathan’s x-rays to him. I told him that I would get it to him by that Friday. I did not get a response back until Sunday morning, Mother’s Day. It was not the news I was hoping for. He told me that he needed to see Nathan ASAP and that he would need surgery. He sent pictures of what my son’s surgery would be and a wave of emotions flooded me that morning.
The next morning, I spoke with his assistant and got an appointment for that Friday. Nathan and I made the 4-hour trip to West Palm Beach. Our appointment was at 3:30PM and we did not meet Dr. Paley until 7PM. I was warned ahead of time that I could be waiting hours before I met with him. A team came in at 7PM and Dr. Paley explained everything he emailed me the week before. Luckily, I was in a better place emotionally and had done a lot of research up until our appointment. He also mentioned other potential surgeries that Nathan may need throughout his life including a hip replacement by age 40. Nathan will be having surgery at the end of this month (May 2018). He will be in the hospital for about 4 days. We will stay at a local hotel for 14 days or so in West Palm Beach for physical therapy and post op appointment.
Perthes (LCP) is a long-term, complex disease. Each case is unique, and each outcome is not the same for everyone. We ask for your prayers and thoughts as our journey continues with Perthes.
The funds that we are raising are to help with out of pocket medical bills and housing expenses while in West Palm Beach.
Organizer
Jen Miller
Organizer
Lutz, FL