Does any one have a child with joint problems

[space1999]

Hi, my son has a lot of joint problems and was diagnoised with hypermobility 3 years ago. However I had a meeting at school today for his medical problems and the peadiatrician and physio were there. My son's joints swell and they get hot, he suffers huge pain and spikes temperatures at night with the pain. He can only walk for 5 - 10 mins at a time. It is getting worse now it is getting colder and once the damp starts he will be even worse! He becomes pale when he is in pain and his gait becomes bad. He is having problems at school as the pain is causing him to a) not concentrate on his work and b) being in a bad mood with his class mates and friends due to the pain. He is on paracetamol 4 times a day and brufen 3 times a day. The pead and the physio now want him to go back to the rheumatologist as they think there is something else there. The last time he was tested for arthritis but came out negative, (there is history of Arthritis in the family) pead things it was to near him finishing his chemo and would have come out false. Does anyone here have the same problem with thier child which they could give me advise.
P.S. He was diagnoised with perthes disease when he was 2 in his left hip but that now seems to be all fine. He was diagnoised with Leukemia when he was 4 but he has finished all treatment after 3 and a half years and there seems to be no sign of it coming back. He is 9 now.
Thank you every one X

[Mc Lovin]

No, but you must be very proud, he sounds like a real trooper

[mechsympathy]

Mc Lovin said:

No, but you must be very proud, he sounds like a real trooper

Poor bugger.

The arthritis tests aren't as good as we'd like btw. In rheumatoid arthritis the blood test is negative in 20% of cases IIRC. So although the tests were negative, it doen't mean he's not got it. Is the rheumatologist a paediatric specialist?

[BigLepton]

I thought this was going to be a thread about kids who keep dropping their spliffs. . . . . .

[wideload]

My littlest brother is now 14, he is hypermobile in every joint in his body. It was tricky at first as he didn't walk until he is 4 or 5. All we did was as soon as we could introduced him to sports that helped him build up his muscles e.g. swimming, then judo. All is good now as he is relitvely normal, for a little brother anyway and has a fair few party tricks which girls seem to like. He even decided himself to take up ballett and is enjoying it.

I don't know how applicable this is though

[BigLepton]

space1999 said:

He is on paracetamol 4 times a day and brufen 3 times a day.

I have one leg shorter than the other which causes similar inflamation pain to your son. Paracetamol and Ibuprofen are a waste of time for me, whereas Naproxen works a treat. It seems a little out of fashion with doctors these days, but worth exploring for your son.

[aclivity]

My two eldest children had problems with their hips - my eldest, now 6, will be going into Alder Hey for her 9th (I think ... I have lost count) operation on her left hip in January. Her problem is obviously different to the situation you describe with your son, particularly as she rarely feels pain (except when tired). The reason I am posting is that you describe problems in the legs, depending on what the diagnosis is, you may find some useful information on the following discussion forum:

http://www.steps-charity.org.uk/forum/

Sorry I can't be of more help - but do sympathise with your situation.

Andy

[Meeja]

I suffer from joint problems (RA), and as an adult I find it hard going at times.

To have these problems as a child must be unbelievably difficult.

You have my utmost sympathy as a parent, and your child has my utmost respect.

[V8mate]

My daughter - 18 now - has had juvenile rheumatoid arthritis since she was 18 months old. She refused to be beaten by it and I'm sure her PMA has really helped her to avoid ending up in a wheelchair as some sufferers do when they hit puberty.

She remains on constant medication but lives a pretty normal life othewise.

If you'd like to chat to someone who grew up with it and can now reflect from a more adult perspective, drop me a PM and I'll put the two of you in touch.

[space1999]

mechsympathy said:

Mc Lovin said:

No, but you must be very proud, he sounds like a real trooper

Poor bugger.

The arthritis tests aren't as good as we'd like btw. In rheumatoid arthritis the blood test is negative in 20% of cases IIRC. So although the tests were negative, it doen't mean he's not got it. Is the rheumatologist a paediatric specialist?

Thank you, he is so good doesn't complain and thinks he is invisible! Yes she is, Dr Clinch is her name and is doing a paper on hypermobility. Interesting to know about that, I didn't realise. I have written that down and put it on my pin board for when I see them. Thank you

[space1999]

wideload said:

My littlest brother is now 14, he is hypermobile in every joint in his body. It was tricky at first as he didn't walk until he is 4 or 5. All we did was as soon as we could introduced him to sports that helped him build up his muscles e.g. swimming, then judo. All is good now as he is relitvely normal, for a little brother anyway and has a fair few party tricks which girls seem to like. He even decided himself to take up ballett and is enjoying it.

I don't know how applicable this is though

Thank you for that, they said he also has it in every joint but apparently they are all the same and don't differ at all unlike most cases! Typical! LOL! We have tried sports but his knees and ankles won't support him and he collapses after a 5 mins! He finds it difficult then to stand. Its like his knees and ankles won't support him. We have tried horse riding but apparently the horse is too fat! LOL!! And hurts his hips. He works on the laptop and after half an hour his hand is 3 times the size and his neck is hurting. I thought it was RSI but it seems to be any kind of exercise. I have noticed that hypermobile people are damn good at gymnastics but they can't explain why one person gets pain and the other doesn't. Apparently hypermobile people don't have swelled joints or heat or temperatures with the pain! He has disturbed nights too. Can I have a magic wand! Thank you for your help.

[bob1179]

Hi Space1999, I feel really bad for your young'un, he is putting up with a lot.

I was diagnosed with Perthes disease when I was about three years old. I have to have a hip replacement at some point (I'm 28 now) as one leg is more than an inch shorter than the other. The pain can be quite severe sometimes but you just sort of put up with it, it's caused all sorts of other problems with my back and knees but I've tried not to let it bother me.

You're lad is putting up with a lot and it sounds much, much worse than anything I've had to deal with. I wish you and him all the best and you will get through it. I know it can be hard but you have to stay positive.

[space1999]

BigLepton said:

space1999 said:

He is on paracetamol 4 times a day and brufen 3 times a day.

I have one leg shorter than the other which causes similar inflamation pain to your son. Paracetamol and Ibuprofen are a waste of time for me, whereas Naproxen works a treat. It seems a little out of fashion with doctors these days, but worth exploring for your son.

That is intersting I'm putting that on my pin board too! Thank you

[adminH]

space1999 - if he's going to be referred back to the rheumatologist, get them to test for Lupus. It's an auto-immune disease and can mimic arthritis symptons (amongst others) very well. The joints/areas affected swell, turn red and are extremely hot to the touch.

I was diagnosed nearly 3 years ago and have been on prescribed daily medication since but it only took a couple of months to feel the benefit of them. I still have the occassional flare-up but nothing like it was before.

He sounds a brave lad to put up with all that pain, I hope they can get to the root of the problem very soon.

H

[space1999]

aclivity said:

My two eldest children had problems with their hips - my eldest, now 6, will be going into Alder Hey for her 9th (I think ... I have lost count) operation on her left hip in January. Her problem is obviously different to the situation you describe with your son, particularly as she rarely feels pain (except when tired). The reason I am posting is that you describe problems in the legs, depending on what the diagnosis is, you may find some useful information on the following discussion forum:

http://www.steps-charity.org.uk/forum/

Sorry I can't be of more help - but do sympathise with your situation.

Andy

Thank you for the link Andy that does help a lot, I noticed there is lot on there which I have been through myself, my son was born with clicky hips and my brother had a club foot (the 1st person to ever have the op done!) I feel for the people on there and you too, we do have a blue badge and have been putting off getting a wheel chair for him (he has a disabled buggy). (mind you the looks we get for having a blue badge is horrid! They all think I should be disabled!) Its even worse when we can't find a loo as he is missing his colon too! So I tend to put him in the buggy and fly him around to find a loo! There should be more public loos!! LOL!! Good luck with everything. X

[space1999]

V8mate said:

My daughter - 18 now - has had juvenile rheumatoid arthritis since she was 18 months old. She refused to be beaten by it and I'm sure her PMA has really helped her to avoid ending up in a wheelchair as some sufferers do when they hit puberty.

She remains on constant medication but lives a pretty normal life othewise.

If you'd like to chat to someone who grew up with it and can now reflect from a more adult perspective, drop me a PM and I'll put the two of you in touch.

Ohhh thank you I would love to, that would help a lot and also make my son feel better. He still thinks he can do everything! His body just won't let him. His hands swell as well and writing and being on the computer is difficult. I just want him to enjoy everything without having to pay for it! P.S. How do I get in touch! My computer skills are a bit lax!!! Thank you.

[space1999]

bob1179 said:

Hi Space1999, I feel really bad for your young'un, he is putting up with a lot.

I was diagnosed with Perthes disease when I was about three years old. I have to have a hip replacement at some point (I'm 28 now) as one leg is more than an inch shorter than the other. The pain can be quite severe sometimes but you just sort of put up with it, it's caused all sorts of other problems with my back and knees but I've tried not to let it bother me.

You're lad is putting up with a lot and it sounds much, much worse than anything I've had to deal with. I wish you and him all the best and you will get through it. I know it can be hard but you have to stay positive.

Gosh I hope it all goes well. Yes we were told to that he would need a hip replacement before he is 30. How do you cope with the pain? Thank you for your kind words. I do and try and stay postive but when he is crying and has to go up the stairs on his bum because his legs hurt, it goes straight to my heart! The problem is he loves doing everything with his friends and he just can't keep up!

[V8mate]

space1999 said:

V8mate said:

My daughter - 18 now - has had juvenile rheumatoid arthritis since she was 18 months old. She refused to be beaten by it and I'm sure her PMA has really helped her to avoid ending up in a wheelchair as some sufferers do when they hit puberty.

She remains on constant medication but lives a pretty normal life othewise.

If you'd like to chat to someone who grew up with it and can now reflect from a more adult perspective, drop me a PM and I'll put the two of you in touch.

Ohhh thank you I would love to, that would help a lot and also make my son feel better. He still thinks he can do everything! His body just won't let him. His hands swell as well and writing and being on the computer is difficult. I just want him to enjoy everything without having to pay for it! P.S. How do I get in touch! My computer skills are a bit lax!!! Thank you.

Click my name (on the left) and you'll reach my profile. On the right-hand side of the page is an 'Email' link

[OSR]

Hi Space,

Has he been tested for Ankylosing Spondylitis? I know a couple of people (much older btw) who have had this come on after cancer treatment. It's hard to diagnose though. Also try to get his meds changed. My OH has back/joint problems and is too flexible. They still haven't decided what he has and he's been seeing docs, consultants, physios, osteos etc since he was 12 he's now 22. Ibuprofen seems to be a favourite with GP's 'cause it's cheap but it didn't do much to help him and caused him stomach problems. He seems to be having some success with paracetamol in combination with other drugs though.

Hope the little fella finds something to help him soon. Being in pain all the time is so tiring and it's hard for other people to understand when there's nothing visibly wrong.

OSR

[rhinochopig]

OSR said:

Hi Space,

Has he been tested for Ankylosing Spondylitis? I know a couple of people (much older btw) who have had this come on after cancer treatment. It's hard to diagnose though. Also try to get his meds changed. My OH has back/joint problems and is too flexible. They still haven't decided what he has and he's been seeing docs, consultants, physios, osteos etc since he was 12 he's now 22. Ibuprofen seems to be a favourite with GP's 'cause it's cheap but it didn't do much to help him and caused him stomach problems. He seems to be having some success with paracetamol in combination with other drugs though.

Hope the little fella finds something to help him soon. Being in pain all the time is so tiring and it's hard for other people to understand when there's nothing visibly wrong.

OSR

Same here with 'brufen. I was told to take it following a prolapsed disk and within a week I had to come of it, due to stomach cramps etc. Nasty stuff IMO for long term use. One only has to google it to find :stomach ulcers, holes in the stomach/intestines, etc.

Space 1999 - have you tried swimming with your lad. Hydrotherapy type physio is superb for bad joints as it removes the load created by the weight of the body.