Newbie - 12 year old Son

Scoobydoo
Scoobydoo Member Posts: 8
edited 16. Mar 2011, 07:24 in My Child Has Arthritis
Hi

I have a 12 year old Son who has had JIA since he was 7. We don't know anyone else that has JIA and it seems less common in boys.

We're having a bad week this week with it and I just wanted to talk to others in the same situation.

Comments

  • dankai
    dankai Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi scoobydo
    I am also new and waiting for my 12 year old son to be diagnosed. He has his first rheumatology appointment in leeds next month! He too is also very fed up and beginning to realise there seems to be noone else out there like him, although unfortunately there are. Hope your son is well at the moment and you too.
    take care
    Dankai :smile:
  • Scoobydoo
    Scoobydoo Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi Dankai

    Hope your Son's appointment goes well. - I bet you can't wait to just have a diagnosis - hospital appointments feel like they are a lifetime away even though only a few weeks don't they.

    My Son has it in his knees, ankles and wrist. We seem to be heading into the unknown at the minute - JIA vs growth, and hormones. We're back at the hospital next week.

    Fingers crossed for your appointment. I've just told my Son that there is someone on here the same age as him struggling with his joints and he said is there really..... he wanted to know what joints etc etc.

    You take care too and keep your chin up. :-)
  • dankai
    dankai Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi scoobydo
    My son has it in his hips, knees, feet but having problems in his back also. yes have waited since Nov for the appointment, he got admitted to hospital after a doctor finally put all the sympoms together after years! We live in North Yorks, where do you live? My son is currently going through all the hormones too, being happy then completely miserable when in pain, it's so hard, isn't it. Today was a good day, so I hope when he gets in it still is! lol.
    Anyway hope you both are good today
    Dankai
  • frankiesmum
    frankiesmum Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi

    My son is nearly 10 who also has JIA. He has had it for nearly two years!! You are right there's definately a lot more girls affected than boys. My son also felt he was the only one with it as he is in his school which makes him feel very isolated. Thats why this site is so good as we can all share our feelings and experiences. My son has it in his knees at the moment but it has also affected his feet & ankles. He's a real sporty boy so you can imagine what he;s been through. He is currently waiting to go onto Embrel as we have tried MTX but unfortunately it hasn't worked :(. This disease is a real battle but you learn to be strong as you have to!! Hopefully one day it will leave our kids alone and we can continue to have a normal life and our kids can enjoy their childhood!
    take care

    Michelle x
  • dankai
    dankai Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi Michelle
    Can I ask how mobile your son is with the pain affecting him and when you say feet where exactly in his feet? I'm just asking as my sons pain in his feet is under foot like near the heel. My husband just thinks he is in pain because he wears the wrong shoes or it's his posture! It is very hard to understand that some days the children are able to maintain a normal day at school then suddenly in soo much pain. It is a good site to find that the children are not alone and how other people cope.
    I hope you are both well.
    Dankai
  • frankiesmum
    frankiesmum Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Dankai

    Frankie's left mid foot is normally the area affected although he did have problems last year with his heels. He has insoles to wear although i'm not sure that they really help? He does about 90 excercises with weights on each leg and trys to do as much sport as poss, although when he;s in pain it's hard enough to walk let alone run.

    What medication is your son on and does he have constant flares?
    Thanks

    Michelle
  • Scoobydoo
    Scoobydoo Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi Dankai and Michelle

    My Son has had the worst week he has ever had since being diagnosed. He's not been at school at all this week and it's affecting so many joints that it hasn't before. Hips, Jaw, big toe, couple of fingers as well as the usual knees, ankles wrists and shoulders.

    My Son was on Methotrexate but the quality of his weekend and the upset before even taking it was just a nightmare. Enbrel seems to be suiting him better, as in the side effects, but he's never had a flare like this before, he can hardly walk.

    We have the insoles and they have helped his posture. I mainly just keep them in his school shoes. My Son is also really sporty and most of the time keeps up with it at school. He's starting to learn his limits and will ask to sit out if he's having a bad day. I can more or less guarantee after a PE day the next day he aches - but he always has a go and blames everything but the arthritis.

    This site is really good and it is good to share experiences and realise you aren't alone at all. Have any of you seen the CCAA website - they run a family weekend every year. Unfortunately we aren't able to make this years, but we're hoping to go next year.

    Have a good weekend :-)
  • dankai
    dankai Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi Michelle

    My son is currently on Naproxen 375mg x2 daily and paracetamol. We have an our first appointment in 2 weeks, and he says he is always in pain but livible, then he seems to have flares every other week at the moment. He has'nt done PE for about 3 weeks cos he soo suffered after. Today he had physio and again is suffering, poor chappie.Your poor son too, it's so horrid watching them in pain isnt it? Hope your little man is feeling better soon!
    Dankai
  • frankiesmum
    frankiesmum Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi

    Frankies steroids are dropping which means he's stiffening up again! Still waiting for Enbrel as the primary care trust don't seem to want to pay for it! What a joke, it's been nearly 3 months what's money when a childs welfare is at risk!!

    Sorry to moan but just sick of waiting! When he finally get's it just hope and pray that it works. Where are you both located in the UK?

    Thanks

    Michelle x
  • dankai
    dankai Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi
    WE are in Richmond North Yorkshire, pretty market town but hills everywhere lol. You?
  • jordansmum
    jordansmum Member Posts: 316
    edited 30. Nov -1, 00:00
    hi just thought i would let you know my son is also 12 his arthritis is in his hips knees ankles and has just spread we think to his neck it is such an evil disease the last 12 months have been a nightmare with constant hospital appointments to our local hospital and bristol childrens they are now thinking of putting jordan on anti tnfs as methotrexate not working so i do know what you and your children are going through, jordan is the only pupil at his school with arthritis and he has had so much time off but they are really understanding and so good with him. Hope you and yours are well today xx jenny
  • Scoobydoo
    Scoobydoo Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi all

    We had our hospital visit and it wasn't very good at all - the arthritis is still in the usual knees, ankles and wrists, but he now has it in over 20 joints. You can imagine what it was like being told.

    Medication wise, he's now been put on oral steroids, enbrel and top up of MTX. (Joint Injections in a few weeks). I know that he will feel so much better after the injections - but everyday feels like forever at the minute.

    This has been the worst couple of weeks ever and he's in so much pain, it's really heartbreaking that our children suffer like this.

    Hope you are all enjoying the school holidays.
  • lindseyhall
    lindseyhall Member Posts: 13
    edited 30. Nov -1, 00:00
    Hi, I'm a mum too. Matthew was 18months when he was diagnosed. Please check out my Facebook forum. We really do keep in touch on here and I'm sure you'll find much of what you experience as a family is in common with many of our stories. Bets wishes. Lindsey X
    http://www.facebook.com/permalink.php?story_fbid=10150112588442884&id=12131682883#!/group.php?gid=12131682883
  • smurf
    smurf Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi Scoobydoo ,

    My son is 12 as well and has PA for 18 months now. He loved his sport especially rugby but is too sore to play. He is getting so frustrated and fed because he can't join in with P.E , play rugby and take part in all scout activities. I am finding it very difficult to see him in pain even though I have had Arthritis for the 17 years and know all the in's and outs of the disease.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello smurf, your poor boy and poor you. Do you have the same sort as him? I am about to start my 15th year of PA and am on a shed load of meds which I have to grudgingly admit do something but nowhere near enough to relieve the symptoms. It must be so hard to see him struggle - all a parent wants to do is kiss things better, make stuff go away, but with this disease that is just not an option. I feel for both of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • smurf
    smurf Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi dreamdaisy

    Yes I have PA as well throughout my body and had 17 op's due to it. although Callum has been diagnosed with PA they are testing for Lupus now as he has Raynauds and leaking kidneys as well . I know what you mean about having to give in sometimes. Have you meet many people with PA as I haven't.

    Take care

    Smurf
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    The only people I have 'met' with PA are on here. I have only had three ops, two open synovectomies on my left knee and one closed on my right. You say 17? Blimey! What have they done to you, then? I won't be about much from tomorrow - I am going away for a few days. If you reply but I don't it doesn't mean I am not interested - I am just off the forum! I will be back in full DD strength by Tuesday. Both of you take care, please. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • smurf
    smurf Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi dreamdaisy

    Sorry I haven't got back to you earlier had busy weekend with trying to get Callum to do his homework , joy ! I will PM you about my op's as I am sure not everyone wants to know about my boring medical history. lol !
    Did you have a good weekend away ?
  • Scoobydoo
    Scoobydoo Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi Smurf and Everyone

    I know exactly what you mean about the sport.

    My Son has been off school now for a month, he's not well at all and it hurts me so much to see him in pain everyday. I just feel helpless. The medicine just isn't touching him at all. Thank god steroid injections next week - so hopefully will have some quality back.

    I just wish when he has a flare he could just go straight in and not have to wait weeks for the injections. I know that there are so many other children that need to be treated and that they have been on a waiting list - but it's just sad watching your own deteriorate.

    This is the worst it's ever been for us, lots and lots of tears. He said this morning "I'm fed up of everything hurting everyday all I just want to say is I'm going out to play see you in a bit". It's heartbreaking.

    Just finished a course of steroids and poor little mr is very bloated and now starting to get worse again. we started the methotrexate on top of the enbrel last week. He got himself into a right old state - but had it in the end and as it's a lower dose the side effects weren't so bad, he was just very grey looking and quiet all day. All I seem to do is give medicine and injections.

    To have it yourself must be hard too and you know exactly how it feels.

    I've really struggled emotionally this time and have been signed off work.

    Can't wait for next week.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Oh dear scoobydoo, this arthritis malarkey hits everyone hard, not just the person that has it. I empathise with your boy (being a sufferer myself) but I can also see how hard this is for you. To have the roles of mum and nurse so blended together cannot be easy and to know that whatever you do it won't really bring the desired relief well, I know about that too. These meds can be effective but sometimes they cause more trouble than they appear to be worth. He does seem to struggle with them tho - I hope he adjusts sooner rather than later. Pain is tiring and wearing, the meds are the same, as is the arthrirtis. It's a vicious circle of the worst sort.

    There are brighter times around, every now and again, but the difficulty comes in spotting when they are happening and appreciating them while they are there. I hope that once he is stabilised on the meds, and perhaps once the steroids have had a chance to do their thing that he does pick up and feel a little better/brighter, and the same goes for you. This is not an easy time for any of you, is it? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben