06 May 2014

Kameron's Journey Begins... {The Diagnosis}

Where to begin? Let's just start from the beginning...

On March 7, 2014 Kameron began to complain of right leg pain. He had been limping for a few days and being worried that he may have injured it in his normal 2 year old rough play, Kev and I decided to take him into the ER. He had an x-ray done, and was discharged a few hours later with a diagnosis of 'Toxic Synovitis'; a condition that is caused by a viral infection that sometimes settles in the hip joint. The virus causes swelling at the hip joint and makes it painful to walk. It is fairly common in children his age. Since he had been pretty sick just a few weeks earlier this diagnosis made sense. We were told that this would pass in a about two weeks (max) and it was nothing to be concerned about. We went home relieved, gave him ibuprofen for the pain and swelling and began the process of waiting it out.

Fast forward a month.

On April 10, 2014, I took Kameron to see our pediatrician. By this time it has been well over the two week max mark that was given to us at the ER, and Kameron's limping and complaints of leg pain had not subsided. In fact, they had gotten worse. What used to be just sporadic verbal complaints of  "knee hurts," had morphed into daily complaints of "weg (leg) hurt." He had began to point directly at his right hip and even things like changing his diaper would cause him to complain of pain. After a long day of x-rays, pokes, prodding and lab draws our pediatrician seemed to be very concerned with his visible limp and complaints of pain, and we were finally referred to an Pediatric Orthopedic Specialist. I wrote about this experience in a previous blog that can be found here.

Fast forward four days.

On April 14, 2014, We had our first appointment with Kameron's Pediatric Orthopedic Specialist. The appointment was short. She manipulated Kameron's hip in different positions to find out his range of motion and to see if anything caused him pain. She had him walk, then run up and down the hallways of Seattle Children's Hospital as she assessed the degree of his limp. And lastly she reviewed his x-rays from the week before. Then without hesitation she explained to me that Kameron had Legg-Calve Perthes Disease (LCPD), a pediatric hip disorder that causes the head of the femur to collapse due to lack to blood to the area. She went on to further explain that the cause of LCPD is unknown and treatment options vary depending on how the head of his femur deteriorates and grows back. She explained that there is a four stage process to LCPD and currently Kameron is in the first stage in which the head of his femur is not receiving blood and therefor is collapsing and dying. During this stage he begins to complain of hip pain and will have a noticeable limp that may be better or worse some days. Until the end of the rebuilding process in 2-5 years we have no idea what his prognosis will be. The only thing we can do right now is NOT allow him to jump, run, rough play, or do anything that can cause more damage and make the regrowing process more difficult. Basically, we have to stop our 2 year old boy from being a 2 year old boy, for the next 2-5 years.

The uncertainty of this disease is what's hardest. He has a greater chance of having his hip pop out of socket. As we "wait and see" how this progresses we are looking at possible bedrest with traction, casts, braces, surgery, physical therapy, a combinations of some of these and/or nothing at all. The ultimate hope is that he regain mobility of the hip and that the bone will regrow and reshape correctly. From start to finish, stages 1-4 could take anywhere from 2-5 years and treatment could be longer if his femur does not regrow properly. Just from having LCPD he is at a higher risk of having a hip replacement later in life and/or developing crippling arthritis in his hip.

Kevin and I are having a very difficult time keeping Kameron from running and jumping. We have had to implement a 'No Running in the House Policy' to make it an equal playing field for both kids. We have learned that swimming and cycling are good activities for kids with LCPD as they are low/no impact. I have been looking into swim classes and with summer just right around the corner there will be more options for getting outside for bike rides and to swim. We are learning how to play without the rough housing (which is hard) and I have turned to online support communities for parents with children who have LCPD. Some days are harder than other as Kameron complains non-stop of his leg pain. On these days we are following his Orthopedic's advice and are avoiding parks and outside play. This is most difficult for Kaydence as she too is forced to stay inside and play quiet non-active games. When we get the opportunities, Kev and I try to get some one-on-one time with Kaydence to allow her to be able to do the things she cannot normally do when brother is around. However, with our busy schedules and me nearing the end of this pregnancy our time is often limited.

Kameron doesn't know his limit, and at 2 years old I can't be surprised. It is hard to constantly tell him "stop," "no more jumping," "no running," "walk please," "buddy you have to stop stomping." He will often push through the pain, caught up in the joy of play and it won't be until he has stopped that he realizes his leg hurts. Knowing he is in constant pain hurts my mama heart, the limping is hard to watch, and knowing that we can't do anything to help him really sucks.

So as of now we wait it out. We adapt and adjust and we figure it out as we go. We are learning what sacrificing as a family means and we are doing what we can to make sure that our sweet boy will still be able to be the active child he deserves to be.

Here are some websites to help explain and give more education to Legg-Calve Perthes Disease:

Seattle Children's Hospital
Scottish Rite Hospital
Mayo Clinic
Kids Health

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