Two weeks ago, Elan’s Drs. gave him the go-ahead to walk! This means that he can weight bear or walk as tolerated. Since having the fixator removed in March, Elan has been wearing a brace and using crutches. He continues to wear the brace but, only at night. He no longer needs crutches but we encourage him to use them for support when he gets tired. We will still use the wheelchair for longer distances.
The Drs feel that Elan is far enough along in recovery and that walking won’t damage the hip. Most of Elan’s hip is in the re-growth phase now. One of the things that the surgeon did to move this disease along was to drill a small hole Elan’s growth plate. It is the hope that this stimulates blood flow to the femoral head (think ball and socket) so that the hip can once again grow. Elan’s surgeon is very optimistic and feels that he won’t require additional surgeries. He feels that he caught Elan just at the right time to make an impact. Through distraction (the fixator) and abduction (bracing to hold the ball in the socket), Elan has dramatically improved the condition and shape of his ball in the right leg. The ongoing concern is that something happens to once again flatten the ball before complete re-growth takes place. And then, there’s the long term impact of all this… Elan’s gait or walk should return to normal over the next several months. We’re fortunate as there doesn’t seem to be a discrepancy in his leg length– something common with Perthes.
We solicited 2nd and 3rd opinions before allowing Elan to walk again. A more conservative approach would keep Elan ‘toe-touching’ or non-weight bearing for several more months. The crazy thing about this rare hip condition is that none of the experts agree and to a certain extent, make educated guesses at the road to recovery. After all of these years, no one really seems to have a clear understanding of what the correct path is. What they do know is that range-of-motion is critical to long term prognosis. Elan’s ROM has always been excellent due, in part, to his athletic ability and attitude. The Drs. that we visited were impressed with Elan’s ‘before and after’ progress and x-rays. In the end, we worried about muscle atrophy from not using the leg for too long. We also decided to follow Dr. Standard’s advice, the Surgeon in Baltimore, MD that is guiding Elan back to good health. Elan’s long term prognosis continues to be guarded but his chances for a future pain-free life have been greatly improved by the path we’ve taken.
Elan won’t return to a more active lifestyle until Fall at the earliest. For the time being, there is no running/jumping/sports like activity. As you can imagine, we’re all pretty excited to have reached this milestone. Elan still has a long way to go but is making progress. He is often frustrated at the snail’s pace of improvement but we constantly remind him how far he’s come. The pain never left and unfortunately Elan continues to take strong meds for some relief. There have been a couple of falls but thank g-d, no damage was done. Around here, we gage our days in terms of not-so bad and really bad pain… From what we have learned, Elan’s condition (Perthes) seems to come with long term pain. In the short term, we will continue traveling to Baltimore twice a week for physical therapy.
Life is slowly beginning to return to a somewhat normal existence. We are now beginning to worry about the challenges of raising a 10 yr-old boy Elan has finally returned to school almost full-time. With the help of teachers, a wonderful nurse and administration and his friends, he is becoming acclimated after having missed so much of the school year. Janet & I have gained perspective during this experience, take nothing for granted, and love our kid more than ever. Parents often say they’ll do anything for their kids, we feel like we’ve been put to the test! Once again, we are wowed by our 10 yr. olds guts, determination and bravado in the face of adversity and pain.
Please wish Elan luck as he continues his journey that brings him back to good health!