New hip at 15

jordansmum

Hi guys ,my goodness it's been a long time since posting on here , I wish I could be posting on here with good news but Jordan is still having a lot of problems his treatment with methotrexate, enbrel and all the painkillers have not kept his disease at bay so mr gent at Southampton hospital has desided a new hip is in order . Has anyone else's child had a replacement joint i know that it is needed but I am worried about the long term prospects he is 15 that's so young his surgeon said he will have a lot of restrictions as these joints were designed for people of lets say the older generation whom are not as energetic as a youngster so I wonder how long it's going to last thanks for reading , any insight would be great .

HannahT

I just wanted to send you good wishes for the surgery!

Stay strong.

H

darcymay35

Hi my daughter is 13 she has severe systemic arthritis which effects all of her joints , she has had it from the age of 3 , she has recently had an mri on her hips because she is unable to walk and the the pain in her hip is excruciating! They unfortunately told us that the arthritis has destroyed a large part of both hips and I cant understand why they have told us there nothing that can be done until she is older ! How can she cope with this ? I'm finding all these doctors and specialist so un helpful

[Deleted User]

Hi darcymay35
I am so sorry to hear your daughter is having such a difficult time, having arthritis in the hips is very painful indeed and it is extremely hard as a parent to see your child in pain. We have a dedicated phone line for issues involving young people with arthritis called the Source on 0808 808 2000.
We also have a section called children with arthritis https://www.arthritiscare.org.uk/managing-arthritis/children-with-arthritis including a booklet about having a child with arthritis https://www.arthritiscare.org.uk/what-is-arthritis/resources/606-my-child-has-arthritis
Your consultants may feel that they cannot presently offer surgery to your daughter because she is still growing but it would be worth asking them to clarify this situation for you. It is also reasonable to ask them what their plan is to support your daughters independence now. It can be hard to ask these questions and it may be worth taking someone with you who can support you in getting the answers you need about her treatment plan. Please keep us up to date with how you get on and I am sure other community members on her will post support and suggestions for you.
Best Wishes
Sharon

stickywicket

Hello darcymay35 and welcome from me too.

No matter how bad things have ever been for me I have always been so pleased that it was I who have the arthritis not my sons. Watching our children in pain is one of the hardest things we can do.

I'm sure Sharon, our webmanager, is spot on with her reasoning. It will be impossible to replace a growing hip and would surely only lead to more and more problems. Waiting is hard but almost certainly essential.

I'm so sorry your daughter is unable to walk. That will only make matters worse as exercise makes our muscles strong and strong, supporting muscles mean less pain.

Again, I'm sure Sharon is right in that you can't be left in this limbo with no guidance. Somehow or other your daughter has to get through this period until she is old enough to have a hip replacement. And someone has to be responsible for helping her to do this. What does her rheumatologist say? Has she been referred for physio? Is her medication working well?

Arthritis Care has been promoting an 'online pain management for children with chronic pain' www.feelingbetter.ie You can find information on it at the top of this page.

Please talk to someone – your rheumatologist or GP? - to see what can be offered. Usually, if docs are asked questions they will answer them. Sometimes it can be difficult to know what questions to ask so try to make a list of any questions you have beforehand.

And do let us know how you get on.

frogmorton

darcymay35

I am so sorry to hear this news.

I sadly think it is probably because your daughter is growing that she has to wait

My own daughter is now 18 and has avascular necrosis due to leukaemia treatment over the last 2 and a half years.

She has had some surgery on her hip (this weds the 14th) a core decompression. Her problem is slightly different as the bone has died due to lack of blood supply and at 18 she has stopped growing. They hope this might delay the need for a hip replacement.

She also has a collapsed shoulder joint, (similar in shape to the hip bone), which needs replacing. They are trying to get her funding for a donor bone as an artificial one will wear out the shoulder socket,(luckily the hip socket is much thicker). Seeing her in pain is dreadful, so I really do know how you feel.

Her hopes and dreams, (hairdressing), are on hold now for the second time while we wait and she suffers on.

I agree also with what has already been said; What are they proposing your daughter does in the meantime? A frank discussion needs to happen and you definitely should take someone with you to support you and make sure you ask everything and 'hear' everything they say in reply.

Sending you ((())) and strength

Toni xxx

dreamdaisy

Hello, I am not a parent but I was a very poorly child and I know my mother had a real struggle sometimes coping with everything my illnesses bought with them.

I have no wise words but I can offer some hugs and gladly do. ((( ))) DD