Briana's Story

[bks]

Briana was diagnosed with perthes a little over a year ago, when she was 10 years old. The first doctor we saw said that because of her age, there was nothing that could be done. We immediatly went for a 2nd opinion. This doctor said there was a slight chance that the head of the bone would heal, but not a very big chance due to her age. Both doctors said that she had to discontinue all sports, with the exception of swimming. Briana was very athletic, like most children who get this. Her favorite sports were gymnastics, soccer, and basketball. Her doctor now tells us a year later that she will NEVER be able to participate in these activities again. He has basically said that there is NO options for Briana, other than a complete hip replacement, and that can't be done until she is an adult.

[greig]

G day BKS

I was diagnosed with Perthes in the right hip back in 1970 in Scotland by a Kiwi Doctor.
I was put into plaster from neck to toe with a bar across my ankles for 6 months then from hip to toe for a further 2 years.
The plaster finaly came off in 1973 and apart from having hen legs all was ok.
I have played Rugby league, soccer rugby union, I ran 100m at zone and state.
Briana with the right treatment should be able to have a full child hood get as much advice as possible, ask about immobilisation and the likely out come.
Having been a sufferer of Perthes and having a clear understanding of the problem, is seems crazy to me that the hip joint would not be immobilised to allow nature time to regenerate the the bone head.
Just to tell a kid to go easy on the joint is like asking the bull to go easy in the china shop.
Get advice educate yourself to all aspects and treatments.
Good luck and give the wee one a big hug from me, I know what she is going through
tell her there will be light at the end of the tunnel.

[Donna Brown]

Hi BKS and welcome to the group!

Where are you? There are specialists that are having amazing success with an external fixator and for a child as old as Brianna, that would be the very best option for her at this point.

I can hopefully find a specialist as close to you as possible to get an opinion from about this - let me know.

Donna Brown

[Donna Brown]

Hi and welcome Greig

Nice to have another adult perthes survivor join us here.

I'm not sure where Briana is, but longterm casting & bracing isn't a treatment option in some parts of the world nowdays. I understand that there are drs in the States who are looking at going back to it, but for example, here in NZ, it just isn't an option.

This is why the fixator is coming to the fore as 'the' treatment for the future, possibly. I say possibly, as with most things medical, time will prove whether or not it does what it appears to do. However, to date it is the only option that truly unloads the hip joint and allows it to rest, recover and for cartilage to reform properly. For an older child, this can be the best treatment option, as there is only a certain window of time where an osteotomy is effective.

Donna Brown

[bks]

We are close to Beaumont TX., U.S.A. The Doctors have told me that because of her age, the bone will never regenerate itself.

[Donna Brown]

Hi BKS

I would like to put you in touch with an online support group for parents of perthes kids that is going to absolutely blow you away with the information you will find there and support!

Please email me thru the address on the home page of this site so I can organise this for you and they will also help you to find a specialist that can help with treatment for Briana too.

If you have digital copies of her xrays, you can email them to Dr Paley at Sinai Hospital in Baltimore for an opinion too - he is doing some amazing leading edge work with fixators and older diagnoses perthes kids. I can't speak highly enough of him and his team, as due to the training that is done for other specialists in his hospital, our specialist learned how to use the fixator and we benefited from it, all the way over here in New Zealand!

For anyone else too - please feel free to email me through this site if you have any questions - knowledge is power and I went through this perthes journey as a child, and then again as a parent without the knowledge initially. Its only time and perseverence that allowed me to learn all that I have and if I can help others by pointing them towards the best source of information or the best specialist or support, then I have repaid those who eventually stepped in and helped me. Kind of a 'pay it forward' situation!

Kia kaha to all - this is Maori for 'Stay Strong'

Donna - New Zealand

[tanya]

Hi BKS,

Any update on Briana? Sorry to hear that her age, and being female, puts her in such a bad state. Hoping you've managed to get some more advice. Have you followed through with contacting a support group as Donna suggested? These are great and very helpful.

Tanya.