I've been watching this discussion for quite a while but it seems to go in circles. My son was diagnosed with Perthes at 5, in his left leg. We took him to 3 orthopedics for opinions of what to do. They all agreed in a brace that lifted him enough so the leg could dangle with a built up shoe on the right food. By the end of the 2 years we realized it was going into the other hip because of his night aches. X-rays proved it was so.
The bone in the left leg was still too soft (although it had grown back nice & round because he was not walking on it) so the doctors & brace company put him into a double brace that strapped around his waist to keep from twisting. He sat on the padded part and both legs dangled inside the braces. His feet were stable with wheels that slid up & down the braces as he moved.
At the end of another 2 years both balls of the hip sockets had grown back but not hardened enough to run & jump, so he had a 5th year of "taking it easy". So far he says he has to pain or problems at all, which is why we agreed to the braces from age 5 to 9. When he had the double braces he had to balance with crutches. We didn't let him feel sorry for himself or think he was "disabled or handicapped"... he just had a problem that was being fixed.
His treatment was from about 1965-70 in Wichita, KS. I'm not sure if they still use the same but while it was a tough 5 years for all of us, he has lived an active life ever since. The doctors told us that about 30% of the children that have it will have it return later in life and will need hip replacement.View Thread
My son's treatment was more than 40 years ago, 3 orthopedics at that time agreed on what to do. He had X-rays every 4 months to watch progression of the ball in the hip socket "sluff off", as they called it. When it reached a point the circulation was restored the ball grew back.
All this time he wore a brace on the affected leg with a built up shoe on the good leg, so there was no pressure on the bone as it repaired itself. He got around very well with one brace, but at the end of 2 years the ball in the other hip socket was deteriorating.
At this time he was fitted for double braces and both legs "dangled" and he balanced with crutches. It was hard on him and hard on the family because he wore those braces as long as he was awake and active, except when he would glide around the house on a skateboard on his tummy. This gave him freedom to move around the house, pick up toys and roll off the skateboard to sit up and play games with the others.
After 2 years in one and 2 more years in double braces, X-rays showed no flat spots on the new bones. He was told to "not jump hard" for a year while the bone hardened. At 51 he doesn't have any hip problems. He never had any pain meds at all but did take "bone-meal" tablets every night before bed to keep away the leg cramps we called "Charlie horses""026 that would be as hard as a golf ball & same size in his small legs.
They hit any night we forgot a bone-meal tablet. He drank a lot of milk but obviously was not enough calcium. The bone-meal fed the problem, not cover up like a pain med. His records disappeared when one "student" graduated, I was told he probably took them to work on his thesis. Too bad others didn't know about this treatment, sure worked for my son.
Best wishes for your son and all children faced with this. As hard as it was to watch him struggle with those braces, the treatment worked for my son and I am sorry it isn't offered now (by the posts so far). View Thread
I had to sign up to post so took me a while. Our son was diagnosed with Perthes at 5 yrs old...3 ortho specialists and we went with the brace recommended, with built up shoe on good leg to allow the bad hip/leg to dangle. Instead of being over the nightmare at 2 years I knew before X-ray proved it was in the other hip.
He was fitted for double braces and had to use crutches to balance, depressed him until he came in from school one day and announced "I can hang upside down on the monkey bars better with 2 braces than I could with one". His teacher retired the next year <grin>. We were told the ball in the hip socket had to reach a stage that the circulation was restored, that we needed to be careful that the ball didn't have flat spots to cause trouble later in life. Because he had 5 years to play all sports it was very hard to make him realize the choice was his to have a healther life when grown. He is 51 and no sign of problems, we were told 30% of the kids have it return later in life at which time they will need hip replacement. He played sports and is an avid hiker, enjoys disk golf & camping with his family. We were told that "most of these Perthes kids" are over active... we knew he had several hard jumps that may have brought this on.
He doesn't have one leg longer than the other and no other sign of ever having Perthes. He wore a single brace for 2 years, double braces that were held together by a waist band, that he sort of sat in, for 2 more years. A year to let the bones harden and that very next year, won the gold trophy for "Pass, Punt & Kick" for his age group for our county.
He would wake up during the night in severe pain but didn't know where, plus all photos showed he favored standing on one let. While wearing the braces he would wake up with golf ball size "charlie-horse" in the calf of either leg. We found that bone meal absorbed, just a single tablet before bedtime gave him the calcium to completely eliminate those cramps. We felt like we had good advice since his hips ended up without any flat spots to cause pain. When we took the braces off in the evening we gave him a skateboard to lay on & sail around the house. His job was to pick up toys... he didn't know he was handicapped during those years. An electrical engineer now, he leads a full life without restrictions.
I sincerely wish you all the strength to do what is best for your kids, it's SO hard to hold them down, but it was 5 short years and so many blessed ones since.View Thread
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