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My son has been living with Perthes for 2 1/2 years. He was diagnosed at the age of 6. He started off with the limping symptoms. It took 3 trips to the doctor’s office before they diagnosed him. Thankfully his doctor had the disease when he was a child, so he knew what to look for. We started with pt. and of course no running, jumping, etc. for the first year and a half. He had doctor apt. every 4 months with x-rays. January 2011 appointment was different. Things were looking good until then. The bone was protruding out of the socket. So the doctor said he needed surgery. Cut the femur, take a piece out, and tilt the head so the whole head is in the socket. Then they placed a plate and screws. He was in the hospital for 5 days. The pain was unbearable for him. He came home in a wheel chair, and non-weight bearing for 6 weeks. This meant home tutor. He was out of school. He hated not seeing his friends or not being able to play with the ones that would come visit. It was mostly video games. When the doc released him back to school he was so happy. Of course he had to go back to pt. His left leg muscles were so weak from not using them; he couldn't stand only on his left leg without falling over. They had him do Land Therapy and Hipotherapy. During this time one of the therapists noticed a leg length discrepancy of about 3 quarters of an inch. Also noticed his ankle and toe bone was not forming right and he was losing his arch in his foot. So they ordered him a lift and patty bob for his shoe. After all this we had our regular checkup and told her what was going on. She measured his femur and tibia they both came up a total of one inch shorter than the right leg. The big blow was, she was stumped on why his bone was that much shorter. She said we had to wait and see what happens and he may have to have another surgery on his right hip when he is a teenager to slow the growth down so the left leg can catch up...We went home and it all sunk in. The next week I went to her and told her I don't want to wait and see what happens to my son I want to know what is going on. So her being so gracious said we could get a second opinion and see if she missed something. She said my son is different than any Perthes patient she has seen. "He is taking his own path." He recently has had the hardware taken out from his hip about 2 weeks ago. He can walk around the house without crutches, but no horse playing, running or jumping. With one screw being left in his bone could break with impact or twisting wrong. He can go back to school in a wheel chair. In 5 weeks we go back for another checkup. Today for the first time in this whole thing I talked to a counselor, and it helped me tremendously. She will meet with my son and the rest of the family next time. It has been hard on my son he is a very active boy. He can't wait for the day for the doc to tell him he can do what the other kids do. I know God will do great things with him. Our faith is what has gotten us through all this. Yes it has been shaky here and there. But we stand strong and P.U.S.H (pray until something happens) threw the trials. So until next time......
Posted by: Margaret Vanover | 11/21/2011 at 06:58 PM
Hi, I'm Belen, from santiago del Estero, Argentina. I'm 28 years old and when I was 9 I have had Perthes on my right hip. I haven't had too much problems performing my activities until 2 years ago, when after a field hockey training I started suffering from pain in my hip. I stopped training for a few months and then a got back again to my activities. This year the pain started again but on my knees, so I went to the doctor and he told that my right hip is too much damaged and that my knees pain was due to this damage. So, now I've stopped running and training hockey, finally, I think it would be the best for me. Now I'm thinking about the surgery I have to go through, its consequences and cost.
Posted by: Belen | 06/13/2011 at 10:28 AM
i hope your daughter is OK tarahhh! p.s. my surgury is scheduled in August, which i guess is Ok because then i only miss one week of summer and i can still run around when school starts. i'm excited because that will be my final surgury!
Posted by: izzie | 05/15/2011 at 01:46 PM
My 6 yr old was just diagnosed with perthes and I am trying to get information of the reality of every day life. We are trying to find things we can do with him from others who have been dealing with this.
Posted by: Tarahhh | 05/05/2011 at 11:48 AM
Izzie, I vote for surgery in May too. As long as you keep doing your schoolwork! Then you can enjoy more of the summer. And Joseph, that's awesome! I can't wait to read it!
Posted by: aMaNdA, jack's sister | 04/17/2011 at 08:54 PM
Izzie, I vote for surgery in May, as long as you still do your schoolwork. Then you can have more of the summer with a stronger leg. Jack agrees, minus the schoolwork part :) Good luck!
Posted by: Jack's Mom | 04/15/2011 at 08:41 AM
good job joseph! i bet your book will be great! anyway i have a doctors apointment in a week to see how i am doing with perthes and to schedule my surgury. it will either be in may or june. i hope it will be in may so i won't miss the summer, but my mom wants me to have the surgury in june so i won't miss most of yhe last month of fifth grade! when do you guys think i should have it?!
izzie
Posted by: izzie | 04/05/2011 at 06:39 PM
Good for you, Joseph! What a great way to channel your energy during this difficult time. That's why I started Jack's blog - to give me something to do, and to help others by sharing information about this rare disease. I look forward to reading your book!
Posted by: Jack's Mom | 04/04/2011 at 05:31 PM
hi evrey one. i am working on book about how hard it is to go threw perthes. and i am going to get it published and put in sores i alredy foun a publising conpany. and i am going to get them put on store shelves it is called. LIVING WITH PERTHES. and i am going to giv the money from the book to perthes resarch.
Posted by: joseph | 04/03/2011 at 11:23 PM
Best of luck to you, Joseph. Remember, Perthes kids are strong and determined! Keep us posted on your progress.
Izzie and Izzie's Mom
Posted by: izzie | 01/10/2011 at 08:40 PM
I play regular soccer with my friends at recess, Jack! By the way, it just started to snow here in Colorado! FINALY!!!
Posted by: izzie | 01/10/2011 at 07:52 PM
Hi Joseph - good luck. We'll be thinking of you. Let us know how you're doing afterwards.
Posted by: jack and jack's mom | 01/10/2011 at 08:15 AM
hi every one, i'm going to get the x-fix on in 1 week so i am pretty nervous.
Posted by: joseph | 01/08/2011 at 09:37 AM
hi izzie, do you do regular soccer or crab soccer? i got to do crab soccer and i always won! i am doing good with perthes right now. i get the plate out of my hip next month, yuck.
Posted by: jackinator | 01/03/2011 at 08:06 AM
This is Izzie. I do P.T. every week but I am always tired in it. I get to play soccer at the end, though, so that wakes me up. Maybe I should suggest to play at the beginning?? Anyway, how is everyone doing with perthes right now? I'm OK, but my surgeon just moved to New York. My family is trying to find a new one to do my last surgery.
Posted by: izzie | 12/30/2010 at 09:22 PM
hi izzie i went on the tredmill too in pt and did it in their gym!!!
Posted by: joseph | 12/24/2010 at 10:27 AM
hi every one - dr. paley got back to me and he said i needed the x-fix. so in january i am going to have the surgery.
Posted by: joseph | 12/09/2010 at 11:19 AM
great! i didn't really need crutches.
Posted by: joseph | 11/21/2010 at 08:53 AM
yayy izzie! i got to go on the treadmill at pt. it was fun! but they wouldn't let me put the speed up really high.
Posted by: jack | 11/18/2010 at 07:47 AM
izzie here! i got off crutches about one week ago and i am doing good. i hope that after physical therapy i can run again.
Posted by: izzie | 11/17/2010 at 09:30 PM
I bet you're glad the surgery is behind you, Izzie! We hope you recover quickly. And another thing Jack liked to do, especially when he was tired, was listen to books. We started the Harry Potter series from the beginning. I would read to him sometimes and sometimes he would listen to a book on tape or CD. Keep us updated...
Posted by: Jack's mom | 09/22/2010 at 09:28 AM
This is Izzie's Mom. She just had her surgery today and is doing pretty well. She's very tired. We're getting ready for the long road of recovery ahead. Jack is inspiring us! We welcome encouraging comments!
Posted by: izzie | 09/21/2010 at 11:50 PM
thanks for the advice! i am 10 years old and love soccer.
Posted by: izzie | 09/09/2010 at 06:07 PM
hey izzie! i'm jack's sister, amanda. do you have any brothers or sisters? when jack got his surgery, his best friend got him a horn that made a REALLY loud noise when you squeezed it, so whenever i came near him he'd honk it so i wouldnt bother him! haha! it was so loud, everytime i just ran away covering my ears!
GOOD LUCK!
(\__/)
(='.'=)
(")_(") <--- bunny! =)
Posted by: amanda (jacks sister) | 09/09/2010 at 11:02 AM
hi izzie! when i had my surgery, my mom got me a webcam and then i could still 'hang out' with some of my friends. i had a big stupid cast on for a long time. will u miss school? i missed 3 months!!! but my teachers came to my house so i still had to do work :( my surgery worked and now i can run around again. good luck!!!! let us know how it goes.
Posted by: Jack | 09/09/2010 at 10:29 AM