Will you share your experiences ??

56lu25 · 11. Sep 2009, 13:19

Hi There

I'm hoping that you guys will able to help me by sharing your experiences with me and perhaps giving me some advice about dealing with arthiritis.

My 12 year old Harry was diagnosed with arthiritis today. They are still unsure as to what type but the pediatrician has referred him to a specialist to find out the full extent of whats going on for him. For 6 months he has been having swelling in his kness, ,ankles, calfs which is there for a day or two, and then dissapears for a few days to return again. Over the past 5 weeks it has also spread to his back, shoulders, neck and thumb joints. He is totally drained of energy and spends all his time lying on the sofa.

Could you guys let me know how you cope with flair ups, feeling poorly and school, and for the sportier people have you been able to carry on ??

Take Care
Louise
xx

bexmum · 12. Sep 2009, 03:48

Hi Louise, I'm so sorry to hear you and Harry have been hit by this 10 ton truck. I hope our experience will help. My 12 year old daughter was diagnosed when she was 3 and over the years has been on NSAIDs (various ones as she developed)and we have tried diet, massage, spiritualism (yes, really), homeopathy - whatever we could find. But nearly two years ago she was close to being in a wheelchair until we were finally transferred to a paediatric rheumy consultant and she had 70 joint injections (toes to jaw) and has been on methotrexate for 18 months. And apart from the damage of the previous 9 years, you really would not know she has arthritis. FIGHT for the best possible care and don't be afraid if they tell you the best option is injections and mtx. It terrified us but without it.....and so far her bloodtests are coming back fine. She has missed some school over the years but mostly for hospital appts. If she got a cold it caused a flair - calpol helps tremendously, we have shares in the company!

She swims, rides, plays tennis, netball, golf and hockey - dances around like a looney. Yes, she is still stiff due to previous damage, no she can't walk as far as others but this is improving. Her disease is inactive at the mo and I firmly believe it is down to the mtx. She has become very strong minded and will not let it beat her and this is as important as her medication. If Harry has always been active this will stand him in good stead stamina wise - keep him as positive as possible. Our very best wishes - you've stepped on a rollercoaster but the support you can get is tremendous. Thinking of you. Dee and Bex

elnafinn · 12. Sep 2009, 05:14

Hello you two wonderful, caring mums

I am really happy that you two have got together and hopefully will be able to help and support each other.

You know you can always Private Message each other on here.

It is good that you were both posting on this site at the same time.

I wish you and your youngsters all the strength in the world to get through this.

Love
Elna x

lisa11 · 14. Sep 2009, 09:23

hi louise
my son also 12 was diagnosed last year ive sent you a personal message and look forward to hearing from you welcome to the site and wish you good luck
love lisa :P

56lu25 · 26. Sep 2009, 07:46

Hi everyone

Thankyou so much for your kind words and sympathy. It helps.

We've had a good week this week, no swelling and he's been up and about playing a bit like his normal old self again. He is still saying he has painful legs and wrists and i am giving him ibuprofen for that. I have also noticed that in the mornings he is soooooo stiff, he could'nt bend down to pick up his lunchbox that was in the bottom cupboard and if he drops anything he's buggered. Thanks for the suggestion of a hot bath in the mornings Lisa.

The trouble is that harry is an extremly inwards person. He hardly ever complains of pain, even when he has swelled up like a ballon and he must be and he refuses to give up or rest. It's a good thing that he is so dertermind and positive, but i worry that he is in more pain then he lets on. And sometimes i worry that i am interpretting pain to be worse then it is.

Anyhow must go, a huge massive thankyou to you all, and wish you all a good week ahead xxxxx

clairemanchester · 30. Sep 2009, 18:09

Hi

My daughter was diagnosed when she was 3 with systemic arthritis, she is now 6.
It took us about 3 months to finally get our local A&E department to admit her and do further test but once this was done we were lucky to be transferred to Alder Hey under an excellent consultant.
Our daughter was in hospital for a few weeks but then improved with a little physio and a combination of steriods and methotrexate. All was good but she has had a flare up and has been in and out of hospital since June. I have had very low times since this flare up because she is a little older, asking lots of questions, being moody and the pain has been worse, so difficult to explain to a child why this is happening. But i know she is getting the best care possible and we are hopefully getting her back to pain free once she starts on a different medication (infliximab) next week. Our daughter can't stomach the methotrexate weekly injections anymore so fingers crossed the new medication will work and the methotrexate can be stopped!
I just wanted to say that our daughters consultant gives us great confidence and we know there are a number of different drugs/procedures to be tried if this one doesn't work. It is very important to get your child referred to the right doctors who are experienced in JRA and speaking to your childs school and explaining everything to them also helps your child and gives them that extra support when they need it.

Sorry for the long post!

Keep strong to all you parents out there

Claire

Will you share your experiences ??

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