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My three year old daught has arthritis...

3 replies

QueenSieve · 29/05/2012 11:38

My three year daughter was diagnosed with juvenile arthritis of her right knee almost two years ago. It affects the way she walks in a bad way, her knee has been stuck at 90 degree angle for about 18months. Shes been under Lewisham hospital for those two years but last year she was also referred to the evalina childrens hospital at st. Thomas'. She's had years of Physio, steroid injections and manipulations and Nothings seemed to work. She had an operation in march to shorten ligaments and tendon, had part of her thigh bone removed to release pressure on the muscles. It's over two months since that op and she's gone back in today for another manipulation. She's come back from theatre and the surgeon has said they's no improvement with the movement of her leg, and that he wants to 'let nature take it's course' and he's not willing to operate again for at least another 6months! While I understand why he doesnt want to operate straight away I can't help but feel the nhs are giving up on my little girl?! She's been thru so much and it all seems for nothing. I'm now considering going private, surely it can't hurt to get a second opinion, but I have no idea how to go about it.. If anyone has any advice it would be greatfully received! Thank you.

OP posts:
Are your children’s vaccines up to date?
DeWe · 29/05/2012 12:18

It won't hurt to get a seond opinion.

BUT

Think about your motives for wanting the operation. When we have a child who has a medical issue we, as parents are desperate to solve it for them. Maybe the next operation will do it, or maybe trying this etc... Sometimes the desperation to solve it actually isn't in the child's best interest.

My dd2 was born without a hand (unoperable). Some however are less clear cut on treatment. The medical professionals have talked (at the charity)about how parents will grasp at straws that might improve. They'll take any hint that something might help. I've also heard from someone who's parents' love and guilt drove them to keep pushing operations and treatments. He didn't find peace with his hand until he was a grown up and could say no more operations. He now works with parents to help them to make the correct decision for the child, not for the parents.

You may find someone willing to operate, medics do disagree with best way forward, but please do leave it open that the best thing may be no operations for 6 months, or even longer.

QueenSieve · 29/05/2012 13:15

I totally agree with everything you're saying. There is always a way to make the best of a bad situation as you just explained, And I know it's bothering me more than it does my child. I don't actually want to put her thru the trauma of having another operation, I'd just really like some proper clear cut, straight forward answers, it seems her consultant or surgeon doesn't actually know what's causing her leg to be fixed in one position and they've tried everything they can think it 'might' be instead of exploring further.. For example it's now causing pain in her hip, and putting all her weight on one leg surely isn't good for such little growing legs? It's so frustrating that because I'm only her mother my opinion doesn't seem to count for much. But thank you for your sound advice, I will wait out the 6months and do some more research.

OP posts:
lambinapram · 29/05/2012 13:27

If you do want a second opinion, I have seen consultants at London bridge hospital for both my back and knee (with a knee op) and on both occations they were great. Not sure if they treat children but you could call & find out.
www.londonbridgehospital.com/

All the best for your daughter.

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