Perthes Disease

[KatieG73]

My DD (9) has just been diagnosed with Perthes Disease.

She has been limping since June and complaining of knee pain, we took her to our GP and the local hospital and were advised that she had a problem with the ligaments in her knee. We were told that our DD would be referred for Physiotherapy which we were told would help build up her knee muscles and relieve the pain.

We knew it would take a while for the Physio appointment to come through and as our DD has been limping badly for over 12 weeks we were very pleased to receive an appointment for Monday (16th August).

DH took DD to the appointment and the therapist examined DD for about 5 mins then called for an Orthopaedic registrar - apparently there is no issue with her knee but a significant problem with her hip (they said that hip problems often manifest in knee pain).

To cut a long story short DD was admitted to hospital and underwent several tests over 3 days, she was released on Wednesday evening with a '95% diagnosis' of Perthes Disease. DD has to go back to the day surgery unit next week to have dye injected into her hip to confirm the diagnosis however the consultant is pretty sure it will confirm her suspicions.

It's a lot to take in and it's all happened very quickly. We don't know a lot about the disease ( only what we've googled) and the long term implications.
Once the final tests have been completed we will be advised if she needs a cast and/or leg brace and whether or not sugical intervention will be required, however best case scenario is that DD has to bear no weight on her leg for at least three months and will need to use crutches/wheelchair.

I hope you don't mind me sharing this here but if anyone has any information or experience of Perthes to share we would be very grateful.


Thanks!

Katie

 

[ENSOCK]

I never heard of it but just wanted to give you and your daughter a !

 

[Buckalew11]

Hugs to you and your DD. My DD suffered with pain in both knees for many years and finally this spring she had surgery on both for removal of plica. Quite common and esp.in girls.
We were very relieved to finally have a cause and a fix. My heart goes out to you all.

 

[KatieG73]

I never heard of it but just wanted to give you and your daughter a !

Hugs to you and your DD. My DD suffered with pain in both knees for many years and finally this spring she had surgery on both for removal of plica. Quite common and esp.in girls.
We were very relieved to finally have a cause and a fix. My heart goes out to you all.

Thanks both for your kind words.

Buckalew - I hope your DD is well and recovering from her op.

 

[fraggle551]

Hugs to you and your DD. My DD suffered with pain in both knees for many years and finally this spring she had surgery on both for removal of plica. Quite common and esp.in girls.
We were very relieved to finally have a cause and a fix. My heart goes out to you all.

I've had surgery for this too, twice on the same knee. It is so nice when the pain is gone, although mine is coming back.

OP, hope your daughter feels better soon. I've never heard of what she has, but a diagnosis will hopefully lead to a solution.

 

[KimR]

DH had Legg Perthes disease as a child - is that what you are referring to? I guess he had the more severe type because he had to have surgery as well as casts on both legs for about 9 months. However, he was treated for it and is perfectly fine now.

 

[laurie31]

You might find this site helpful:

http://www.nonf.org/perthesbrochure/perthes-brochure.htm

I hope your DD is better soon. I'm glad they found out what was wrong.

 

[The Mystery Machine]

Wow. My 13yodd needs to see a doctor. We have been blaming on her lack of activity however maybe she has something else?

Good info on this thread.

Thanks for posting and I am glad you got a diagnosis. Good Luck with the treatment.

 

[Sammy]

My husband had Legg Perthes when he was young. Had to wear braces on both legs for a while, but went on to be extremely active and played both baseball and basketball competitively.

Good luck with your DD

 

[Frantasmic]

My sister had Perthes when she was younger. She was diagnosed between 1st and 2nd grade. This was back in the late 60s/early 70s. The first doctor wanted to do some surgery where she would be in a half body cast for 6-8 months. My parents just couldn't see that as feasible and found another doctor who suggested the cast. She did where that brace for a year which also has a large shoe to match the space needed for the other leg to "dangle" (i.e., non-weight bearing). Frankly, at the time, she reminded me of Herman Munster from the Munsters with those large shoes and how tall she became.

It must have worked since she grew to be a really good athlete and even went to college on a volleyball scholarship. She has no lasting effects.

 

[golfgal]

Our dog had this. For her they removed her hip joint and reconnected the tendons/ligaments so she could use her leg (she is only 12 lbs). We did a lot of water therapy and she has had a good recovery (it's been 4 years).

I know of one girl that had this a few years ago. It took them a long time to figure out what it was and she had several surgeries but recovered well and is fine now.

 

[Luv2Camp]

My DH had Perthes when he was two years old. He wore leg casts and a brace, but he's not sure how long. He was fine after the casts and brace. I hope your DD gets though the tests and treatments with success. Prayers coming your way for your DD!

 

[KatieG73]

Thanks for the replies everyone.

It's heartwarming to hear of people who have recovered well from this condition, many of the websites we've read only tell worst case scenario stories.

It's still very early days but we are thinking of getting DD a wheelchair, this was not a route we really wanted to go down but she is finding the crutches very tiring - our thoughts are if she used crutches 90+% of the time we can use the wheelchair to allow her to still participate in some of the activities we would normally do at the weekend without being exhausted.

 

[GoofyforDisney3]

My DD (9) has just been diagnosed with Perthes Disease.

She has been limping since June and complaining of knee pain, we took her to our GP and the local hospital and were advised that she had a problem with the ligaments in her knee. We were told that our DD would be referred for Physiotherapy which we were told would help build up her knee muscles and relieve the pain.

We knew it would take a while for the Physio appointment to come through and as our DD has been limping badly for over 12 weeks we were very pleased to receive an appointment for Monday (16th August).

DH took DD to the appointment and the therapist examined DD for about 5 mins then called for an Orthopaedic registrar - apparently there is no issue with her knee but a significant problem with her hip (they said that hip problems often manifest in knee pain).

To cut a long story short DD was admitted to hospital and underwent several tests over 3 days, she was released on Wednesday evening with a '95% diagnosis' of Perthes Disease. DD has to go back to the day surgery unit next week to have dye injected into her hip to confirm the diagnosis however the consultant is pretty sure it will confirm her suspicions.

It's a lot to take in and it's all happened very quickly. We don't know a lot about the disease ( only what we've googled) and the long term implications.
Once the final tests have been completed we will be advised if she needs a cast and/or leg brace and whether or not sugical intervention will be required, however best case scenario is that DD has to bear no weight on her leg for at least three months and will need to use crutches/wheelchair.

I hope you don't mind me sharing this here but if anyone has any information or experience of Perthes to share we would be very grateful.


Thanks!

Katie

Did they do xray's of your DD's hip? The reason I ask is I had a similar issue when I was young with pain in my knee and the GP at first said it was something similar (pulled muscles/ligaments), but when the pain did not go away after a few weeks of rest, my mother took me to another doctor that did xrays and I actually had what is called a slipped epiphysis. I ended up having surgery to have pins put in my HIP to fix the problem. The pins stayed for a couple years and then were removed and I've been fine since (almost 30 years later).

 

[minniebeth]

Hugs to your DD and your family! I hope you get a quick resolution to it all soon so that she can start healing. It is heartwarming to read the sucess stories here, keep the faith! Best wishes! I will keep her in my thoughts!

 

[DisneyBug1995]

I think this is what my husband had when he was in 3rd or 4th grade. He was on crutches for 18 monthes and couldn't bare any weight on his leg until the ball joint in his hip regrew. He did not have any lasting effects and was very athletic in high school.

 

[Mermaid02]

My DD (9) has just been diagnosed with Perthes Disease.

She has been limping since June and complaining of knee pain, we took her to our GP and the local hospital and were advised that she had a problem with the ligaments in her knee. We were told that our DD would be referred for Physiotherapy which we were told would help build up her knee muscles and relieve the pain.

We knew it would take a while for the Physio appointment to come through and as our DD has been limping badly for over 12 weeks we were very pleased to receive an appointment for Monday (16th August).

DH took DD to the appointment and the therapist examined DD for about 5 mins then called for an Orthopaedic registrar - apparently there is no issue with her knee but a significant problem with her hip (they said that hip problems often manifest in knee pain).

To cut a long story short DD was admitted to hospital and underwent several tests over 3 days, she was released on Wednesday evening with a '95% diagnosis' of Perthes Disease. DD has to go back to the day surgery unit next week to have dye injected into her hip to confirm the diagnosis however the consultant is pretty sure it will confirm her suspicions.

It's a lot to take in and it's all happened very quickly. We don't know a lot about the disease ( only what we've googled) and the long term implications.
Once the final tests have been completed we will be advised if she needs a cast and/or leg brace and whether or not sugical intervention will be required, however best case scenario is that DD has to bear no weight on her leg for at least three months and will need to use crutches/wheelchair.

I hope you don't mind me sharing this here but if anyone has any information or experience of Perthes to share we would be very grateful.


Thanks!

Katie

I had this as a 6 year old in the early 70's... I was on strict bedrest for a while, then moved up to a wheel chair and finally spent 18 months on crutches. The ball of my hip grew back but was deformed (common we were told) and I had a great recovery until 1997 at age 30 when pain returned (the deformed hip was the culprit, it wore away the cartilage)- I just had a total hip replacement last December.

Good luck to your daughter! I want to mention too that I believe the Shriners Ortho hospitals treat this at no charge to the patient/family.

 

[KatieG73]

Did they do xray's of your DD's hip? The reason I ask is I had a similar issue when I was young with pain in my knee and the GP at first said it was something similar (pulled muscles/ligaments), but when the pain did not go away after a few weeks of rest, my mother took me to another doctor that did xrays and I actually had what is called a slipped epiphysis. I ended up having surgery to have pins put in my HIP to fix the problem. The pins stayed for a couple years and then were removed and I've been fine since (almost 30 years later).

Hi GoofyforDIsney, she has had multiple Xrays and an MRI scan, the condition they have diagnosed is a a degenerative disease of the hip joint.
We will know more next week about the long term treatment and whether surgery will be required.

 

[mickeylove2]

My co-workers son had this as a child. Here is a website that she gave me.
She wrote the brochure on this site. If you would like, message me and I will give you her email address (she said I could) she has tons of info and runs a support group for parents. She has worked with some of the top doctors in the US about this disease.

http://www.nonf.org/perthesbrochure/perthes-brochure.htm

 

[KatieG73]

My co-workers son had this as a child. Here is a website that she gave me.
She wrote the brochure on this site. If you would like, message me and I will give you her email address (she said I could) she has tons of info and runs a support group for parents. She has worked with some of the top doctors in the US about this disease.

http://www.nonf.org/perthesbrochure/perthes-brochure.htm

mickeylove, thank you so much. I would really appreciate being put in touch with your co-worker. Although the hospital have been wonderful we still feel a bit isolated.

I will look at the website now.

Thanks again.

Katie