Perthes Disease

[KatieG73]

Thanks everyone for the replies. It's really good to hear of people who have had this condition and recovered well.

The DIS is an amazing place!

Katie

 

[The Mystery Machine]

Yes, despite some of the other stuff you really can get a lot of info here & sometimes a push in the right direction.

I am back from taking my 13yodd to the orthoped. doc. Diagnosis is "knock kneed". There is a fancy word for it but I can't remember it.

She has to wear a brace in PE or anything that will overwork her knee, like sports, bikes, or walking for long periods like the zoo or something.

In addition she has to exercise her hamstrings for several months 6 times a week, working her way up to 10lbs on each leg.

Doctor said that it is a process and will probably take at least 3-4 months or more.

She is so happy to finally figure out what it is as well as I am. She has been living with this for a very long while.

 

[KatieG73]

Yes, despite some of the other stuff you really can get a lot of info here & sometimes a push in the right direction.

I am back from taking my 13yodd to the orthoped. doc. Diagnosis is "knock kneed". There is a fancy word for it but I can't remember it.

She has to wear a brace in PE or anything that will overwork her knee, like sports, bikes, or walking for long periods like the zoo or something.

In addition she has to exercise her hamstrings for several months 6 times a week, working her way up to 10lbs on each leg.

Doctor said that it is a process and will probably take at least 3-4 months or more.

She is so happy to finally figure out what it is as well as I am. She has been living with this for a very long while.

So glad to hear you have a diagnosis for your DD, am sure you are both relieved to know what the issue is and how to deal with it.

Hope the next few months go quickly for your DD.

 

[The Mystery Machine]

So glad to hear you have a diagnosis for your DD, am sure you are both relieved to know what the issue is and how to deal with it.

Hope the next few months go quickly for your DD.

Oh yes. You know you mind races when you don't know why your kid is complaining about pain all the time.

We do have RA in the not immediate family (I have a cousin who is severe with RA) and my dd was on growth hormone for 6yrs so I was thinking maybe it had something to do with that.

Turns out it is a common thing and while it is not an easy fix it is fixable.

I will think good thoughts for you on your journey.

 

[kellyg403]

My brother was diagnosed with this in the 70's when he was about 8. Initially my parents thought he had hurt his knee during a soccer game when he stepped in a hole while running full speed.

He wore a brace for all of 3rd/4th grade. His was the type that had a bar in the middle and he had to almost 'swivle' his hips to walk in them. While he hated them, and certainly kids can be cruel. Hopefully they have much better appartus today.

Anyway, he is 35 years old, been in the army for several years, walks the golf course every weekend (18 holes) and has never had a problem since!

Kelly

 

[Ryner1970]

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

Hi I had Hip Perthes at 6 1/2 years old. I had to where a brace on my right leg, all the way up to above my thigh. It had a shoe attached which was positioned about 3-4 inches above the ground. On the other foot, I had to where a Herman Munster shoe. Which had a heal that was about 4 inches that would make me level with the brace on the bad leg. I had to wear this damn thing till I was 10. I got teased, made fun of, and it was just embarrassing to be in public. I played organized hockey and baseball since I was 4. So it sucked that I couldn’t play sports or run, or anything really until I got out of this contraption. as for what I would call Bullie, I warned them all,”when I get out of this brace, I’m going to get you.” I did manage to get most of them back, with a bloody nose, a black eye or 2. I always protected kids from then on that were being bullied, all through Jr High and High School. I am 58 now. Turned out to be a pretty good baseball player. But doctors told my mom and dad that I shouldn’t play sports like football or hockey ever again. My leg had been in a brace for 3 1/2 years. the muscles never ever caught up to my good leg, and I had pain off and on throughout my life. Eventually having my hip replaced about 7 years ago. I hope your DD is well, and if she ever needs a body gaurd I am here. Lol