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Legg-Calve-Perthes Disease
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momztheword posted:
Is anyone here familiar with or had experience with Perthes Disease either as a child or with one of your own children? I am asking because my nine year old son was just diagnosed with this last Tuesday. We are going later today to see a Pediatric Orthopedic Specialist. I have read so much on the internet and I am really worried that he might have to have braces, casts or be in traction or even have surgery. Prior to his diagnosis I had never heard of this condition. I am so very, very, very grateful that he will eventually be healed and back to normal activities. He is shy but has lots of good friends and is well liked by his classmates but he is also at an age when peers can be cruel and I worry about him emotionally if an extreme treatment like bracing or casts needs to be taken. I know I should try to sit tight and just wait to see what the specialist thinks but I cannot help wondering and wanting to know more about this condition. I do not let him see me get upset because I do not want him to worry. He had a hard time with having to use the crutches because he was afraid the kids would laugh at him. He has found though that EVERYONE wants to help him. His teacher said that the kids are being annoyingly helpful...LOL I have read in some cases they use crutches and physical therapy to keep the range of motion in the hip area. Since my son is older with this the prognosis can be poorer since the bones have less time to re shape and grow. If there is anyone who has experience with this I would love to hear from you. Thanks!
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keeganandema responded:
Hello, my name is Leslie and my 9 yr old son was also diagnosed with this on August 30th of this year. Just like you, we have never heard of this disease. Like your son, mine had to use crutches and eventually a wheelchair. We were told .. Do not have him move his leg. Little did we know, we thought that was best. Eventually we found a great ortho peds at University of Michigan, who said it is not good to have kids not moving,she said the best thing for him is to do is what he can tolerate, his leg will let him know what he can and can not do. My son was waking up every night and missing school so much when he was not moving his leg, now since he is able to do what he can tolerate is it very rare is misses school or is in pain. What my husband and I found out, it is better to keep them moving, like my son's doctor said if you do not keep the hip in motion it will become stiff so when they eventually move it, it will pop out of socket(that is what we DO NOT want to happen). Every doctor has their own opinion but what we found out is moving the hip (walking, riding a bike) what ever their leg allows is much better for them(pain wise too). That is just what we have found, there is nothing my husband and I do not know about this, all we have done since Keegan(my son) was diagnosed is research and 2nd, 3rd and even 4th opinion, you do whatever it takes when it comes to your children. Our main goal is keeping him pain free. Like I said since he is able to be a (somewhat) normal 9 year old, and do what he can tolerate, pain is not so often. I would really like to talk to you, we are dealing with the very same issues, like you I try and hide my worry so he feels all right and not scared, he knows everything I know about this disease, I thought that would be better so if he has any questions I could answer them, and not scare him by not telling him.

Your family is in our prayers. Hope to hear from you. Leslie-(mom) Paul-(dad) Keegan 9yr (our son) Ema 2 yr(our daughter)

My email is knz403@att.net if you would like to talk.
 
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aab3j responded:
hello! I know this was posted a while ago but i was wondering if anyone could tell me the later effects of Perthes disease? My father is 50 years old and he was diagnosed with the disease when he was 4 years old in 1964. He was playing outside one day and the pain was so unbearable that he could not walk. It took them a whole year to determine what was wrong with him. When they diagnosed him he recovered very shortly after. He played sports all through high school and olny complained of pain when he played football. When he was aproximately 30 years old he started to experience the pain again. He has been told a couple times that it is arthritis. I am very concerned for him now because he is completely unable to work. He cant sit down for too long or stand for long periods of time. He has no living relatives that can tell him exactly what happened when he was a child. He told me that he remembers seeing small holes in his hip bone xray. Now that sounds to me like arthritis...do children with perthes disease have arthritis as well? I cant convince him to go to a doctor and i am really concerned for him. can anyone tell me more about this so i can convince him of the seriousness. I know that the medical world is far more advanced than it was in 1964, so i know that there has to be something to help him.....
 
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Annie_WebMD_Staff responded:
Hi there,

At the current time this board does not have a WebMD health professional to answer community members' questions as Dr Parker passed away in April.

I'd like to suggest that you use the WebMD search engine as well as the Google Scholar search engine to look up peer reviewed medical journals and texts.

We do have an Arthritis group of boards for community help with your questions.

Good lucK!

- Annie
 
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2boymom2 responded:
My son is eight years old and he was also just diagnosed with Perthes in July. I have been searching the internet and talking to everyone I know to try and find out more about this. My son has been using crutches the past couple of weeks and a wheelchair whenever we go anywhere with a lot of walking. He has also starting going to physical therapy three times a week His doctor is encouraging him to do a lot of swimming...he says it keeps the range and rotation which keep the ball round in the socket, without the impact pressure. His doctor is telling us that the next step is for him to have a minor procedure and then to get the double-legged cast with the bar in the middle. I am very concerned about school and all of those things as well. I have so many questions and I don't know who to ask. He doesn't go back to school until September, but what did other parents do in this situation. Are they able to go to school in the casts? Can clothes fit over the casts? Will the school assign someone to help him? Do I need to quit my job to be home with home? He is 8 years old, so it is not like he is a little kid that I can carry all around. I'm so sad for all that he is going to endure, but so grateful that he will eventually come out of this okay. I too would love to hear from anyone with any info that could be helpful. Thanks!
 
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Chase_Mom responded:
Well, we have been dealing with this with our 10 year old for the last year and a half. Your email is so familiar to me. My son is in 5th grade now and was diagnosed last October. He treated with our pediatrician since April of 2008 for a limp that was misdiagnosed as a knee strain, iliopsis strain. Xrays taken in May of 2008 were negative. My son was very active in sports going from basketball to baseball and soccer to football, etc. We were finally referred to physical therapy in September last year as his limping had gotten worse after football season. The physical therapist is the one that diagnosed Legg Calve Perthes and the minute I went onto the the NONF website, he fit every criteria, the limp, misdiagnosed, active in sports, etc etc. We got right into a Pediatric Orthopaedic Surgeon and the diagnosis was confirmed. We started treatment with crutches and physical therapy. In January, he underwent a tenotomy where they nicked the abductor muscle, did an arthrogram, and applied a petrie cast. His legs were 46 inches spread. He could have gone to school but there was no way that they could accomodate helping him to restroom, etc. He wore the cast for 2 weeks and then our dr removed it cutting a bottom half and a top half that we ace wrap on at night and along with the bar that holds the hips in perfect position as boys grow at night. We have been doing therapy twice a week since last October. My son also had great friends but other kids teased that he did not need the crutches and it was hard for him to explain what he has so we just came up with the fact that he had a fracture to the femur head and he could not bear full weight on it. He swims a lot and that is encouraged, he bought a Schwinn AirDyne bike that he rides every day at home to keep his rom at its best, he is allowed to golf this summer. I do range of motion exercises with him at least twice a day. My specialist who I have a ton of faith in is now 50/50 considering an osteotomy so I have been doing a ton of research like everyone else on what should be. There is a lot of information out there, and you will want to keep to the newer modes of treatment as years ago they treated this much different. The new school of thought is to keep the kids as active as you can without causing undo stress on the hip. When we first went to the specialist he found that he also went through this on the left side about 4 years ago and we never even knew. Everything I read it the treatment is all about keeping the rom good so that when regrowth does occur the head grows as spherical as possible so that if he does need to undergo a hip replacement surgery it is at age 65 not 35. The hardest thing for my son is that he had to give up all sports and he really defined himself by his athletic abilities so we have had to help him regain self confidence and feel good about himself. He always wonders why this happened to him. I have a wonderful physical therapist that keeps him physically and emotionally up. My husband has had to look the other way at the amount of PS3 he plays now as he can not go out and ride the dirtbikes, play ball, etc. Good luck and keep his chin up, it seems like a long course but I always tell him 10 years from now this will seem like nothing. He has never really had pain with it so thinking of all the issues with this surgery has sent me back out to the information highway
 
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leggperthessupport responded:
Hi Mom,

I am very familiar with Legg Perthes. Our son was diagnosed in 1994 with bilateral perthes. He was nearly 7 and was considered a poor prognosis due to whole head involvement. We were fortunate to have a doctor that was progressive in his treatment and he educated us along the way. The outcome for our son was great and today, (he'll be 22 next week) he is extremely active, is an extreme snowboarder and you would never know he had had the disease.

Proper treatment of the disease-not just managing symptoms- is one of the keys to a good outcome. The other factors are age and severity. In your son's case, his age is a factor against him. The skeletal system, while soft, has an easier time remodeling bone, but as they move toward puberty, treatment plays an even greater role so that good alignment, containment, and removing the pressure from the joint become critical.

When our son was going through this, we knew of no one and there was nothing on the internet. I wanted parents to know that even with a poor prognosis, your child can have a good outcome, so I started the Legg Perthes Support Group, Int'l. and since 1999, we have helped over 3,000 families worldwide. Because I keep the group private-invitation only-to protect the kids, you have to email me for an invitation to join. It's simply a security feature, but I'll be happy to send an invitation to you. We have a ton of information on our site, loads of encouragement and we have monthly online chats with a well known pediatric orthopedist from the Rubin Institute of Advanced Orthopedics at Sinai Hospital in Baltimore. The RIAO is known world wide for their work in limb deformities and the chat is wonderful for parents to be able to address their concerns.

If you would like an invitation - or anyone else on this site searching for information, please feel free to email me at reidweaver@yahoo.com and I'll be happy to help you.
 
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mmtm0427 responded:
I was diagnosed when I was 3. I am now 39 and still walking. At the time of my diagnosis the doctor told my parents to take me home and put me in a wheel chair that I wood never walk again.With the help of Scottish Rights Hospital I have been able to live a very active life.the advancements on this disease are helping alot so dont let it scare you or keep your child from doing the things he would want to do. I also was in braces and never had any problems with kids making fun of me, but my older brother made sure of that.I have arthritis in my hip but can usually control it with meds.My left leg is 1.5 inches shorter than my right,but with the help of shoe lifts it helps.If you have any questions fill free to contact me at michaelmeissner38@yahoo.com
 
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luciamama responded:
My son was just diagnosed with LCPD and we are so overwhelmed. He is going to be 4 in January so I know he has his age going for him, but he is an extremely active little boy he does not stop. The Dr said to stop him from running, jumping, & climbing, and come back in 4 months for another x-ray and follow-up. I was not sure how I felt about theDr. visit. I mean, I know he has it,but are there other things I should be doing! We are deciding if we should get a second opinion. I am just confused! Any advice?
 
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landynmansmom responded:
hello my son (Landyn) who just turned 4(also in January)was also diagnosed about 2 months ago. it's like I just wrote your post. our doctor told us to let him ride a bike from sun up til sun down if he wanted. I was doing some research on-line about swimming and horseback riding ,me too have mixed feelings about this doctor he would not sign a script for hydro therapy, and a wheel chair. the only reason I wanted a wheel chair is because it would take me 4 days to walk around walmart with his walker (and it kills me to wear him in a sling) and he is 52 pounds. they told me if I wanted to take him swimming i would have to do it on my own. so we started that about once a week for an hour (i am now looking into horseback riding) which seems to be helping (last week he only fell up the steps once and busted his lip)my concern is that they want to immediatley medicate him and they aren't doing anything as a preventative. we have an appointment in march so we are going to talk to the DOCTOR instead of the nurse pactioner after that it's probably a second opinion.
 
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landynmansmom responded:
it seems like no one is out there! I had posted earlier, my son Landyn(4) was diagnosed about 2 months ago. we've never heard of this disease either. The thing that's getting us now is they are not wanting to do any preventative. it's very stressful, I know I spend hours trying to research this and there's just no answers it's the same old thing. I honestly don't know what to tell you, other than prayer is the answer. We have been through 7 other surgeries not pertaining to this but, it never gets easier. this time we weren't told "surgery on ..." Just keep your faith in God , he has the power to do anything!! we first turned Landyn's surgeries to God in March of 2007, ever since then we give it all to him and it makes it much easier on us! I'm sorry I couldn't be that much help but if you ever what to talk, I'm all ears. I know there are some days when I just want to pull my hair out!!!
 
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pertheswifeandmom replied to landynmansmom's response:
My son was diagnosed when he was about 6. We took him to his pediatrician and insisted an x-ray. We knew what we were looking for because my husband was diagnosed when he was about 7. My husband, who is 42 now, had been seen by many Dr.'s and none of them knew what the problem was, it was a nurse that diagnosed my husband. When he was younger he was placed in a 2 legged cast with the bar in the middle and had to go to a handicap school. He never had any surgeries when he was young. About 2 years ago he had his right hip replaced because the hip ball grew back in kind of an egg shape and he was having pain because of the ball rubbing on the socket. He continues to have a bit of discomfort but that is from the new hip. As for my son he has had 3 surgeries. The first one was to cut a tendon so that the Dr. could get his legs to spread far enough apart to place him in the 2 legged cast with the bar in the middle, he had that for a few months and was not able to go to school, they sent a teacher to our house once a week(wasn't very good for his education). Then after that surgery the Dr. watched his hip for a while, the ball of my son's hip started to grow larger and larger, so to keep the hip ball growing into the socket his Dr. did a 2nd surgery where he cut the femur bone and angled it so that the ball would grow into the socket, he places a metal bracket in his leg attached with screws. That stayed in for about 9 months then he had the 3rd surgery to remove the metal bracket (my son carried that bracket everywhere and would show all the teen age girl, he loves the ladies)
At this time my son is 15 and he will skateboard and ride bikes sometime (I am noticing it is less and less these days though). He does LOVE to ride his birtbike, he even jumps it, it does hurt him but he will take some tylenol before &/or after he is done. My son is very strong and has never let this hold him down. He played little legue baseball for a little bit (was never a fast runner so he got out alot) he still loved to play.
For now everything is good, he still complains of a little pain and he does have notes of file at school, that if he can't run or play a game any longer he needs to be able to pull himself out, but I let him make that decision not the teachers. He will still run even if it hurts because he wants to be the fastes, he is pretty fast.
Try not to worry to much, it is an obsticle but kids are stronger then we think. Everything will be ok. If you want to talk to me my email is duneplatoon_5@verizon.net , i live in California.
My worry right now is that they said in the past that the disease isn't passed to our children, but we found out that is not the case. I am trying now to find out more information on the genetics of the disease. Will my son have to worry about this with his son?
 
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kjblock replied to pertheswifeandmom's response:
My son was diagnosed with Perthes shortly before he turned six, and his bone had regrown shortly after his 7th birthday. We were lucky and his treatment consisted of stretching exercises and activity restrictions--no casting or surgery. He had excellent ROM which seemed to help him a lot. He now plays ice hockey, lacrosse, and baseball and no one can really believe he ever had a problem with his hip.

We were told that by age 50, about half of people with Perthes in childhood have had a hip replacement. Here's hoping that with medical advancements, they are able to do more and more for these children as they get older.
 
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Loutez replied to kjblock's response:
Hi Folks,
Just wanted to say I am a 56 year old male who has dealt with this illness since the age of 9! At that age, I was given crutches and a waist brace that was connected to a buckle on the back of my right shoe. I was a typical bad boy in that I removed the buckle during recesses and lunch periods and actually played football in the school yard with my crutch tips! Needless to say, my hip joint did not heal perfectly and was told I will have big problems when I get older. Through the grace of God, I have been able to maintain a very normal and active lifestyle since! I have always been crazy about athletics and have slowed very little over the years. I jog frequently, run 9-10 minute miles, play, coach and referee soccer, play tennis, ride bikes, water and snow ski, etc. Throughout all of this, I have dealt with pain and stiffness on a daily basis for 47 years!! It has simply become a part of my life that I have learned to accept and live with. The key element to my active life style has been to learn how to manage the pain and stiffness through stretching and exercize every day. I have taken Advil as needed. That is about it.Whenever I go a few days without exercize, I really begin to feel the pain and stiffness in my right hip!!
As I am writing, my hip is very stiff and painful due to a weekend of wood cutting and stacking of (1 cord of wood)! I did not stretch before and I really paid the price for my neglect! I awoke at 6:00am this morning, stretched and ran for 25 minutes on my tredmill. I know tomorrow I will feel much better because of this.
I just wanted to let you know that many of you can still lead a normal, active lifestyle through faith and proper pain management.
I do know as I begin to naturally slow down with age, a hip replacement will most likely be inevitable. However, the doctors will have to drag me kicking and screaming!!
I am so pleased to know there are websites available to discuss this illness as it makes me feel I am not alone!
Best of luck to all of you and God bless you!
 
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An_242371 replied to luciamama's response:
My 3 1/2 yr old has been dealing with this for about 1 year now. How do I keep him from jumping, running.... and being a normal preschool kid doing what his classmates are doing? We've been dealing with the x-rays every 3-4 months, and he's been on an anti-inflammatory daily for almost 6 months. This has helped with his pain. He attends physiotherapy once a week and our Dr. is constantly telling us if we don't further improve his range of motion we're looking at surgery at cast for 8 - 10 weeks.
Can anyone bring me some uplifting news on their young son?


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