Sunday, September 7, 2008

Legg-Calve Perthes Disease

Never heard of this before? Well, me either until last Thursday and we found out Carson has this. Read more about it here: (sorry I do not know how to add links)

Around the first week of school Carson was occasionally complaining of "leg pain" and limping off and on. When he would point to where the pain was it seemed like he was pointing to his upper right thigh. I figured he had a pulled muscle or something. He has also had "growing pains" a lot since he was 3-4 years old, so I am embarrassed to admit I brushed this "leg pain" off as nothing.

Cam picked Carson up from school the Tuesday after Labor day and told me he was limping very badly. Cam said "you need to take him to the Dr" which if anyone knows Cam this is a rarity. I started investigating this "leg pain" a little more seriously, Carson showed me exactly where it was hurting and I was surprised to learn it was his hip and groin that were hurting. I called and made him an appointment with his pediatrician for this past Thursday.

On Thursday, I dropped Carson off at school and he was walking fine. He had a tiny limp in his step, but only enough that a mother would notice. By lunchtime that day, the school had called me stating that Carson was limping so badly he could not participate in recess time and they were worried about him.

I picked him up from school and we waited for his late afternoon appointment. When we went to the Dr. Carson was still noticeably limping. She checked for hernias (negative) and then started doing Range of Motion (ROM) tests with Carson. He could NOT do them with his right leg and it hurt him badly to try. His left leg was moving fine and he was able to do anything the Dr. did with that leg.

She sent us off for X-rays to test for Legg-Calve Perthes Disease (AKA Perthes disease) and later we got the call that he does in fact have this. If you don't have time to click on the above link here is a shortened version of what Perthes is:

Legg-Calvé-Perthes disease is a temporary condition in children in which the ball-shaped head of the thigh bone, referred to as the femoral head, loses its blood supply. As a result, the femoral head collapses. The body will absorb the dead bone cells and replace them with new bone cells. The new bone cells will eventually reshape the femoral head of the thigh bone. Legg-Calvé-Perthes disease causes the hip joint to become painful and stiff for a period of time (Orthopaedics, 2008).

The treatment of Perthes varies from rest and physical therapy (the "newer" treatment) to surgery and casts for 6 weeks (the "older traditional therapy"). Treatment (healing) usually takes 18 months to two years. We were referred to an orthopedic doctor who we will see on Wednesday. From what I know about Carson's case is that his is mild and that from preliminary x-rays, we will hopefully get to go the physical therapy route. We are hoping and praying that that is what the Orthopedic doc tells us on Wednesday.

So for now we are completing "Cam and April" physical therapy and Carson is having a hard time with it. It really hurts him to move that leg in some positions (especially like extending the knee out like when sitting cross legged etc). I had never tried to do ROM stuff with him prior to this, and I feel really sad I didn't. I had no idea how limited his motion was before the Dr was doing it.

For now, though it already seems like he is doing better. His limp is not that noticeable. I am sure that to a stranger it just looks like he walks a little funny. I however am a little heartbroken by all of this. How do you keep a 6 year old on bedrest for his leg to heal?- (hopefully we do not have to go that route).

So, I will update again on Wednesday after he we know more.

Here is a picture of Carson trying to sit cross legged (he posed himself with the sad face and finger pointing down)You can see the normal position of the left leg and the higher position of the right leg. That is as far down as Carson can "relax" that leg down, this position is painful for him.


The Reese's said...

that is so sad! it could keep you up all night worrying about all the things that can go wrong with your kids. good luck with all to come.

Brian B said...

Sorry to see another with perthes. If interested in writing other mothers, I run a group on yahoo called information-perthes. I also had perthes and worked in orthopedics. I try and clear up any questions and fill parents in on treatments available and which doctors. Feel free to swing by. Brian

Kelli said...

Poor guy! I feel so bad for him. I was at my parent's house over the weekend and ran into Janice at church on Sunday and she was telling me about it. I hope that all works out and that he will soon be able to run and play just like all of the other kids his age.

Christensen Family said...

So sad! I hope that he gets feeling better. Not fun to see your kids hurting and all. You guys have had a busy and fun summer. I wish Tremonton had a parkway place to run or walk on. We have nothing here except the roads. :)

Ben & Keri said...

Sorry to hear about Carson! You have a great mom that will see you get the best care ever! We will say extra prayers for you Carson! Love you!

Chelly said...

Sorry to here another family is going thru this. Our son James was diagnosed when he was 6yrs old also.This started with a little knee pain and now we are in full collapse! It has been a long journey, it is difficult for the kids but really hard for the parents who want to do our job, "make everything better". The hard part is you can't and you just have to let him be the little boy that he is.
If you ever need someone to reach out to - you can email me at

Chelly - Jimmy's Mom

robert wallace said...

I know this post is a little old but I just found it and it reminded me so much of my chid hood.I just want to stop by and let you know That every thing gets better with age like your son I myself was diagnosed with Legg-Calve Perthese Disease when I was about 8 or 9 years old. I am now Twentys years old and am in college to get my doctorate in physical therapy; because I know how much pain I had as a child and physical therapy helped me so much and now i have no pain although i still have the disorder and all its effects that come with it like muscle atrophy, and hip dispalysia. i live in North Caroilna and i went to the best hospital in the state for ortheopedics and I had the worst case sceneario they had every seen. I know i have kinda jabbered on but when i was a kid i hated the disease but now its a part of me and its made me the person i am today 1 strong smart person so never let this little thing effect your life or your sons let it b a good thing from god.

LadyRoo said...

Hello Greener family. I just found this post, and wanted to encourage you as a family unit to keep on keeping on. I know exactly what you are all going through. I not only have a son who has this disease, but I myself have it as well. My son was diagnosed with it when he was 6 yrs old, and he is now 18. I was diagnosed with it shortly before my 12th birthday, and I am now 46. If you have any questions you'd like to ask me, please feel free to email me at and I will be more than happy to answer any questions I can. This disease has affected my family for many years. I also have 2 aunts with it. Please email me, or use that screen name and find me on yahoo messenger. My son has had to have 8 operations due to this disease, and I just had another surgery because of it on Friday. Keep your chins up. You love your son very much, and that will be a tremendous help as you deal with this. Take care and God bless!

My Lash Girl said...

Hi. Just found this post. We live in South Jordan UT. My son was diagnosed a month ago and I am curious to know how Carson is doing. We have a lot of ups and downs and there are days he has to stay home from school because he can't walk. Do you have a good doctor? What about physical therapy?