New mum member

[rachael]

Hi all
I am delighted to have found a site where I can hopefully get more info on my sons condition. He was diagnosed nearly two years ago at the age of 6 with perthes and it is still ongoing. Even though I have searched the internet before looking for info I never came across anything like a help forum - only info on what it was according to medical sites.
Dylan is now 8 and is still getting bad bouts of pain. He constantly walks with a limp and is on a wait and see approach with the doctors, which lately I am not very happy about. They did do the MRI and inject dye in and said he was not a candidate for surgery, but most of the bone had been taken. The last appointment we were told that he was at the end of the disease stage. And we thought great, another few months and he would be getting there, but from what the doctors said it could be anything from 6 months to another 15 months yet, and even then the bone might grow back the wrong way. It is so hard to see him in so much pain when it gets bad. Plus it is doing nothing for his emotional development, not being able to play this or that or keep up with other kids his age because he cant run.
Has anyone any good advice on what is working for your childs improvement? I am taking him to a homeopath tomorrow to see if there is anything that might benefit him there.
Best wishes to all
Rachael

[Donna Brown]

Hi Rachael

Have you considered getting a second opinion? Your sons age is definitely not in his favour with regard to taking the 'wait and see' approach anymore.

Major pain is usually indicative of something not being quite right, like the hip subluxing (partial dislocation) or something else that can be helped, usually with surgery.

The only problem with getting other opinions is that you will get completely separate treatment options too, so you then have to choose what feels right for your family. Its hard to get to that point, but well worth the effort, if you are feeling that things aren't going the way they possibly should be.

The time frame your specialist has given you doesn't seem unrealistic, as their bodies really take a long time to repair the damage done by perthes. The femoral head will inevitably be mis-shapen, with being more oval in shape and the fit may not be the greatest, but as long as it is contained in the acetabulum (socket) and moving relatively well, then its considered to be a functional hip and should see him through into his adulthood.

Donna

[rachael]

Hi Donna
Thanks for your reply and info. Tomorrow I am going to ring up and get Dylan an earlier appointment. His next one is not due until Feb 09. I have noticed yesterday after he had a bath that I can see the hip where it seems to be sticking out at the side. I dont know is this common or has it always been that way. Dylan has a very small frame for his age and finds it very hard to gain weight but his left hip area definately looks different compared to the other side. So would that be a sign of partial dislocation? Also I brought him to a homeopath on Friday in the hope that she might be able to treat him in some way. She put him on silicea to support his body in repairing the damage to the bone and everything he suffers from seems to come under what silicea treats - soft teeth, nervous characteristics, very slow to gain weight, frequent stomach problems and a lot more. Has anyone ever had any gain by using homeopathy or am I just wasting my money? I am pulling at straws at the moment.
I will ask to get a second opinion, but this is the second orthopaedic that has seen him. I really hate to go down the route of surgery if it can be avoided at all, and going by the tests he had he would not be a candidate (according to present doc). Please reply and advise me what I should do or ask when I bring him up for next appointment. It would be most appreciated. Many thanks
Rachael

[Donna Brown]

Hi Rachael

I have sent you an invitation to an online support group where you can ask a number of perthes mums for input into questions to ask etc. They may also have some recommendations for a specialist to see in your area.

That would be the quickest and most efficient way I can help you, as you can then get a wide source of information to tap into, to help with making decisions for Dylan.

Donna