Post by hippygal on May 17, 2007 20:18:20 GMT -5
At age 4 ½ Chris started getting pain in his leg, this came and went and we were not too worried about it. At about age 5 the pain started getting worse, where he would be limping so bad, he could no longer walk than a few minutes without crying and crying.
I took him to the doctor, they took some x - rays of the knee, leg and ankle and nothing showed, so they thought maybe a pulled muscle so sent us home again, over this time the pain came and went about 8 weeks later it was still bad, so I took him to a private orthopedic doctor not once but three times and each time I got the impression they thought I was just a paranoid mother. By this stage he was now hardly walking at all and had a lot of tears.
At 5 ¼ one Monday he came home from school and could not even walk to the toilet without screaming in pain, so I took him down to the local A & E doctors, where there just happened to be a young paediatrician on filling in and as soon I explained the symptoms, he said I think I know what it is and took some x – rays of the hips and yes he was right on, he said it is Perthes Disease and we would need to go to Starship to see an paediatric orthopaedic surgeon, I asked him how long the waiting list would be and he said no you are going now, I will ring them and tell them you are on the way. He offered an ambulance if we did not have transport. This is a day I will never forget and now nearly 7 years on I still remember it like yesterday.
So one hour later with x-rays in hand we headed to Starship and one hour later we had Perthes confirmed, we got given a small brochure and that was it.
By this stage the ball of his hip was about ½ gone, we were given a pair of crutches and put on a waiting list for a wheelchair. Given a prescription for pamol and brufen, and told to stop all sports, running, jumping etc, with an appointment to come back in 2 months, unless things got worse. Got a wheelchair and he used this and crutches for school most of the time for nearly 3 years.
Came home and researched all about Perthes, in a way that was a bad thing as there were a lot of worse case scenarios on there. Anyway with no longer doing impact sports etc and having pain relief, and using the wheelchair and crutches Chris improved slightly, no longer crying every night with pain and started sleeping better. Then about 6 weeks later he came home again in extreme pain, no amount of bed rest or pain relief was helping so took him back to Starship where they admitted him and placed him in traction, funnily enough he loved traction and his first words were “Mum my hip is not sore” He loved Starship could play playstation and had Nickelodeon on TV. He stayed in traction for 5 days I think then home on bed rest for 2 weeks. The hospital physio had set up a program for him and then we got transferred to Wilson home for physio after we were sent home.
This helped but once up and about again the pain came back so back to Starship where we were asked if we would consider surgery, as he was subluxing, and his ROM was bad. We also got told to do as much swimming/water therapy as we could, and to continue physio. Because he was so young we had time on our side to make a decision on the surgery, so we decided to start swimming both at Wilson Home doing water therapy and then we transferred those exercises to the local swim school pool the other days. We started swimming 6/7 days a week for minimum 30 minutes each day. When we went back 1 month later to Starship, the doctors could not believe how much his ROM had improved, so we continued that for another month and again it kept improving. I am so sure and so are the doctors that because of the water therapy this is what avoided surgery for us. We carried on swimming 6 days a week for 2 ½ years then we cut it back to 3 times a week then weekly. All in all he proberly did swimming for at least 4 years.
During this period he was admitted back in to Starship only once for another bout of traction, he was still in pain and he was also still using his wheelchair and crutches for most of this time and when things got to sore, we did bed rest for a week or so which helped. He was also on pain meds for most of this time, so even though he avoided surgery with swimming it was still a hard time for him.
By now he was about age 8 years - 3 ½ years later and we were finally seeing some regrowth, there was a bit of a concern it was growing back coxa-magna. The pain came and went but this is common with regrowth, pain in regrowth can be just as bad as in fragmentation. He still used the crutches and wheel chair on occasions when we went somewhere that there was a lot of standing and walking, but all in all things were going OK. He was classified as Herring C with 100% head involvement.
He is now nearly 12 years old, and is nearly finished regrowth, occasionally he still gets pain which lasts a day or two but soon settles. So just over 7 years on I pretty much classify him as being finished with his hip, we will go back in about 18 months and see how it is going, the last x-rays showed a pretty good hip considering.
Looking back the thing I learnt most is that though the internet is a good resource, it also has negatives by talking about worst case scenarios which can do your head in. No doctor seems to treat Perthes the same, and is there is so much debate on which treatment is the best. All I can say is educate yourself with people that have dealt with it, don't take everything you read on the net to heart and remember that the majority of cases do not need surgery, and have faith and trust in your doctor, if you don't find one you trust find another.
Jaxx (New Zealand)
I took him to the doctor, they took some x - rays of the knee, leg and ankle and nothing showed, so they thought maybe a pulled muscle so sent us home again, over this time the pain came and went about 8 weeks later it was still bad, so I took him to a private orthopedic doctor not once but three times and each time I got the impression they thought I was just a paranoid mother. By this stage he was now hardly walking at all and had a lot of tears.
At 5 ¼ one Monday he came home from school and could not even walk to the toilet without screaming in pain, so I took him down to the local A & E doctors, where there just happened to be a young paediatrician on filling in and as soon I explained the symptoms, he said I think I know what it is and took some x – rays of the hips and yes he was right on, he said it is Perthes Disease and we would need to go to Starship to see an paediatric orthopaedic surgeon, I asked him how long the waiting list would be and he said no you are going now, I will ring them and tell them you are on the way. He offered an ambulance if we did not have transport. This is a day I will never forget and now nearly 7 years on I still remember it like yesterday.
So one hour later with x-rays in hand we headed to Starship and one hour later we had Perthes confirmed, we got given a small brochure and that was it.
By this stage the ball of his hip was about ½ gone, we were given a pair of crutches and put on a waiting list for a wheelchair. Given a prescription for pamol and brufen, and told to stop all sports, running, jumping etc, with an appointment to come back in 2 months, unless things got worse. Got a wheelchair and he used this and crutches for school most of the time for nearly 3 years.
Came home and researched all about Perthes, in a way that was a bad thing as there were a lot of worse case scenarios on there. Anyway with no longer doing impact sports etc and having pain relief, and using the wheelchair and crutches Chris improved slightly, no longer crying every night with pain and started sleeping better. Then about 6 weeks later he came home again in extreme pain, no amount of bed rest or pain relief was helping so took him back to Starship where they admitted him and placed him in traction, funnily enough he loved traction and his first words were “Mum my hip is not sore” He loved Starship could play playstation and had Nickelodeon on TV. He stayed in traction for 5 days I think then home on bed rest for 2 weeks. The hospital physio had set up a program for him and then we got transferred to Wilson home for physio after we were sent home.
This helped but once up and about again the pain came back so back to Starship where we were asked if we would consider surgery, as he was subluxing, and his ROM was bad. We also got told to do as much swimming/water therapy as we could, and to continue physio. Because he was so young we had time on our side to make a decision on the surgery, so we decided to start swimming both at Wilson Home doing water therapy and then we transferred those exercises to the local swim school pool the other days. We started swimming 6/7 days a week for minimum 30 minutes each day. When we went back 1 month later to Starship, the doctors could not believe how much his ROM had improved, so we continued that for another month and again it kept improving. I am so sure and so are the doctors that because of the water therapy this is what avoided surgery for us. We carried on swimming 6 days a week for 2 ½ years then we cut it back to 3 times a week then weekly. All in all he proberly did swimming for at least 4 years.
During this period he was admitted back in to Starship only once for another bout of traction, he was still in pain and he was also still using his wheelchair and crutches for most of this time and when things got to sore, we did bed rest for a week or so which helped. He was also on pain meds for most of this time, so even though he avoided surgery with swimming it was still a hard time for him.
By now he was about age 8 years - 3 ½ years later and we were finally seeing some regrowth, there was a bit of a concern it was growing back coxa-magna. The pain came and went but this is common with regrowth, pain in regrowth can be just as bad as in fragmentation. He still used the crutches and wheel chair on occasions when we went somewhere that there was a lot of standing and walking, but all in all things were going OK. He was classified as Herring C with 100% head involvement.
He is now nearly 12 years old, and is nearly finished regrowth, occasionally he still gets pain which lasts a day or two but soon settles. So just over 7 years on I pretty much classify him as being finished with his hip, we will go back in about 18 months and see how it is going, the last x-rays showed a pretty good hip considering.
Looking back the thing I learnt most is that though the internet is a good resource, it also has negatives by talking about worst case scenarios which can do your head in. No doctor seems to treat Perthes the same, and is there is so much debate on which treatment is the best. All I can say is educate yourself with people that have dealt with it, don't take everything you read on the net to heart and remember that the majority of cases do not need surgery, and have faith and trust in your doctor, if you don't find one you trust find another.
Jaxx (New Zealand)