When my daughter was In the eighth grade she was diagnosed with Undifferentiated Juvenile Spondyloarthropathy, a form of juvenile arthritis. Juvenile Spondyloarthropathy or JSPA causes pain and inflammation of the joints, typically including the pelvis, hips, knees and ankles. Other areas of the body can also be affected, such as the spine, eyes, skin and bowels. Fatigue can also occur. I decided to write this account of our experience in the hopes that it may help other families looking for answers.
When my daughter first started to experience symptoms in the seventh grade we had no idea what was causing her pain or what was wrong with her. We traveled a long road from doctor to doctor to finally diagnose her condition. Every child is different and will experience this disease differently. In no way do I intend this account to be used as a substitute for medical advice or as a means to a diagnosis. In all cases you should seek qualified medical attention.
My daughter was and is an athlete,who strives to excel at every sport she participates in.When she was in the seventh grade she played Ice hockey on a club team and on her boys school team. She also played Lacrosse for the New England Select Lacrosse league (NESLL) and for her town team. The NESLL games had not yet started but her practices were a couple of days a week on top of town practices, She was a very busy kid. When I saw her limping after a practice one day I asked her what was wrong and was worried that we may be doing too much. She got in the car and told me her ankle was bothering her. Not surprising with the amount of running and the uneven fields they were practicing on.
I had her apply ice to her ankle when we returned home and that seemed to be the end of it. This would be the first in a long series of instances where my daughter would keep the pain she feeling to herself. Life went on as usual and a few days later she was again limping. I decided she should skip a practice or two so that she could play in her first NESLL game that weekend. She took it easy,rested all week and did not participate in ice hockey or Lacrosse. Convincing me she was feeling fine she was ready to play in her first NESLL game that Saturday. We were to leave directly after the game for our vacation in Florida. I ignored the fact that she was last in line during the warm up jog,but as the game progressed It became increasingly obvious that something was wrong. It seemed as if she had 50 pound weights strapped to her ankles. When she ran it was if she was trying not to move her ankles and it looked as if she was in pain.
I knew something was wrong, my daughter would never take herself off the field and would never complain. Finally the coach noticing her struggle let her sit out the rest of the game. Afterward she hobbled to the car barely able to walk. Here we were with an otherwise healthy kid who was active in sports and all of a sudden complained of ankle pain in both ankles. My first thoughts were that she was very unlucky, two sprained ankles at once. I assumed that because she sprained one she was running incorrectly and had hurt the other. Add to that the conditions of the field she was practicing on and my conclusion was two sprained ankles. We left for Florida immediately after the game, she was sore but could walk. I decided that the 10 days of rest would be wonderful for her and she would be back to normal in no time. Walking was very painful for her. In fact this would be her major and only symptom for quite some time.
While we were in Florida she confined herself to sitting at the pool and resting. I Knew she needed to be looked at when she had a hard time walking the 500 yards to get there. At the time my brother was seeing a Physical therapist who agreed to take an unofficial look. I felt this was a great solution until we could get to our own doctor at home. The Physical Therapist had her do a few exercises listened to her complaints of how and where it hurt and surmised that she had Plantar fasciitis a common cause of heel pain. This seemed reasonable to me, we left armed with exercises to help with the problem and were satisfied. Returning home from vacation I insisted she take some time off. Each time she tried to return to sports it was too painful. In fact her day to day activities were becoming too painful. She was not getting better. An appointment to her pediatrician was made.
The Pediatrician diagnosed her with Sever’s disease or calcaneal apophysitis, which in simple terms is an inflammation of the growth plate at the back of the heel. It occurs in children and is often associated with over use. It seemed to me that he had hit the bulls-eye. Thank goodness our pediatrician was inclined to cover all his bases,he knew how active in sports my daughter was and decided to ask for a second opinion. Off we went to the sports medicine and orthopedic center at Children’s Hospital in Boston.After some x-rays and some consultation all concurred that it was not severs disease, but could in fact be caused by a posterior calcaneal spur that showed up on the x-ray and Achilles tendonitis. The spurs at the back of the heel are associated with inflammation of the Achilles tendon (Achilles tendinitis) and cause tenderness and pain at the back of the heel that is made worse by pushing off the ball of the foot. This was obviously a common motion in skating,it made sense! She explained to us that Achilles tendonitis is a condition of irritation and inflammation of the large tendon in the back of the ankle,and was often caused by overuse. At this juncture she was given a prescription for steroid treatment to be delivered via electro current along with physical therapy. The electrode steroid treatment gave her electrode burns on her skin and after only one treatment she was in such excruciating pain we went back to the doctors the next day. The doctor ordered numerous blood samples. She was testing for all kinds of things, such as Lyme disease and rheumatoid arthritis. My daughter was then prescribed rest,ice and air casts.
There are times when these bony spurs are removed surgically especially in athletes and dancers, and when our daughter was not responding and pain continued to get worse we were scheduled for a surgery consultation. At this meeting the orthopedist decided that her symptoms called for a closer look ,she felt that they may not caused by the tendonitis. Surgery was avoided and the search for answers continued. Over the next couple of months more x-rays and MRI’s were ordered. She was passed around from doctor to doctor and became quite accustomed to doctors calling her a ” mystery ” or a “challenge”. Finally were were sent to a highly qualified podiatrist who worked with professional athletes, I allowed myself hope that an answer was near. He ordered more x rays and some hefty orthotic inserts for her shoes. At this stage of the game she was in considerable pain and was prescribed Narcotics. She could barely walk at all and had missed quite a bit of school. She had taken to sleeping on the couch because she could not make it up the stairs to her bedroom. We were desperate for answers. The podiatrist declared that she had Tarsal Tunnel syndrome along with a lengthy list of other foot issues that escape my mind. she was now being treated for Tarsal Tunnel syndrome.
I have to interject some advice here. We stayed with the Podiatrist far too long, trying one expensive orthotic after another. He ordered nerve conduction tests which consisted of needles being inserted into various places on her feet and calves. These tests were designed to determine how advanced the tarsal tunnel syndrome was and if it required surgery or if there could be nerve entrapment. Finally the results showed that she did not have tarsal tunnel syndrome. Assuming that there was some kind of inflammation pinching her nerves, the doctor then ordered four rounds of cortisone shots into the tarsal area of her ankle. After the first round she felt on cloud nine it really helped. Progressively the cortisone became less and less effective and finally the Podiatrist decided to send us back to the orthopedic department at children’s.
We arrived at the head of Orthopedic Surgery at Children’s hospital in Boston, relieved to be seeing a doctor who was tops in his field. I felt good about this and felt we would finally get some answers. This doctor seemed to me and to my daughter to be the first doctor that really listened to what her pain was, where it was, and how it started. He examined both of her feet and noticed that her lateral movement was very stiff. After a through examination he told us that he felt very certain that she had a condition known as Tarsal coalition. tarsal coalition is an abnormal connection that develops between two bones in the back of the foot (the tarsal bones). This abnormal connection, which can be composed of bone, cartilage, or fibrous tissue, may lead to limited motion and pain in one or both feet. People can be born with it, but often it is not detected until the ages of 10-16. It seemed to fit her symptoms perfectly.
He ordered a scan where they inject radioactive material into her bloodstream. To his surprise the results came back negative, however he was so sure of his diagnosis that he additionally ordered a CAT scan. Still to his surprise and ours what we thought was the final diagnosis was not to be. This was the point in the whole ordeal that a pivotal decision was made. And that was to send her to an Rheumatologist, a doctor who specializes in arthritis. The orthopedic surgeon explained to me that often times arthritis is diagnosed by a process of elimination and this certainly was the point we were at. His opinion was that it was likely we would find our answers with the Rheumatologist even though she tested negative for Rheumatoid arthritis. Hoping to ease my daughters discomfort he prescribed her with a strong anti-inflammatory medicine and wished us luck.
It took a few weeks to find an opening but they took us in as quickly as they could. While waiting for her appointment my daughter started the prescribed dose of anti-inflammatory medicine. Miraculously it started to help and take effect and within a couple of weeks she was feeling considerably better. She could not play sports still but she could walk and we were encouraged. This point leads me to my next bit of parental advice. If the doctors who first saw my daughter had prescribed an anti-inflammatory I feel that it would have helped to determine that she did indeed have some sort of immune problem and we could have proceeded from there. I wanted to point this out because not having been through anything like this I had no idea what to do. In the long run faced with a similar situation I think I would request anti-inflammatory drugs be administered almost immediately.
The Rheumatologist took her history and symptoms and spent a few appointments trying different medications and making a diagnosis. More tests where done to determine if she carried HLA-B27, a genetic marker which predisposes individuals to JSPA . Although she did not carry this genetic marker they did not rule out JSPA as a diagnosis as not all patients carry the gene. We visited the Rheumatologist frequently for the first year, but after only a month or two they made the official diagnosis of Undifferentiated Juvenile Spondyloarthritis with enthesitis (enthestitis is defined as inflammation where ligaments attach to the bone)
Finally, we had a diagnosis. however uncertain we were about the outcome we had a name that we could battle. I spent many a night holding in the tears and praying for an answer. Over the next year the doctors tried a few different drugs some worked,some did not, some she was allergic to and some needed the dosage tweaked. This was all done through trial and error and she had minimal relief. Once she started to exhibit symptoms in her other joints they decided to put her on Methotraxate. Methotraxate is an immune suppressant that is used to treat cancer patients given in much higher dosages. Because her arthritis is an immune disorder methotrexate works on the same basis. Her body did not tolerate the methotrexate in pill form so it was decided that she would learn to inject the medicine subcutaneously once a week as there are less side effects when it is administered this way. Once she started the methotrexate her symptoms decreased considerably. It was a rough four years but my daughter never complained. At its worst the disease affected her knees, ankles, wrists and fingers.
She has been off all medication for six months now and is relatively pain free. She plays and starts in 3 varsity sports and has learned that it is important to take care of herself, eat healthy and get plenty of rest. It took four plus years to get to this point and it was a very long road to travel. It is hard to say what the outcome will be but I believe that the future looks bright for my daughter. This is a disease that is manageable It is important to get the right diagnosis as quickly as possible so that the symptoms can be controlled. I hope in some way this article may have help someone who is going through a similar problem.