jordan seems very low

jordansmum
jordansmum Member Posts: 316
edited 19. Jul 2010, 14:32 in My Child Has Arthritis
hi guy's hope you are all well today. I have a question is it normal to feel low whilst on mtx only i have never seen jordan this way before even on bad day's he always has a smile but this whole week he has seemed really dispondent.He had physio on tuesday which he really didn't want because he has been in so much pain she was good with him but told him that there is no easy way to get his joints less stiff he even told her that he was fed up. He has been in london over night on a school trip and this has just really wiped him out, does anyone elses child get like this :?: .
thanks again jenny

Comments

  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    jordansmum wrote:
    hi guy's hope you are all well today. I have a question is it normal to feel low whilst on mtx only i have never seen jordan this way before even on bad day's he always has a smile but this whole week he has seemed really dispondent.He had physio on tuesday which he really didn't want because he has been in so much pain she was good with him but told him that there is no easy way to get his joints less stiff he even told her that he was fed up. He has been in london over night on a school trip and this has just really wiped him out, does anyone elses child get like this :?: .
    thanks again jenny

    Hi Jenny - Annie definitly gets like this and is as we speak. She started mtx 5 weeks ago but would have ups and downs before we started the injections. She sounds a bit like Jordon in that she is usually such a happy and content little girl but I think when she has done too much she gets really annoyed and irrated easily. She can also be withdrawn and just wants to watch tele. Wether its the drugs or arthritis or a combination of the two I am not sure. She isnt even in pain at the moment but is definitly fed up. Hope he starts picking up soon. take care - Lucy
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    I'm so sorry that Jordan and Annie are both having such a hard time.

    As an adult with RA who has MTX injections, I can only say that I recognise what you describe only too well :roll: as wehn I am in more pain I tire more easily, everything takes so much more effort so I get more tired, and I find it so hard to get myself motivated.

    It must be doubly hard with youngsters who must find it so frustrating and next to impossible to pace themselves when there are so many demands on them from school, friends etc.

    sorry i cant suggest much to help, but hope that this is just a passing phase until the MTX really kicks in for them both.

    hugs
    WOnky
  • frankiesmum
    frankiesmum Member Posts: 20
    edited 30. Nov -1, 00:00
    jordansmum wrote:
    hi guy's hope you are all well today. I have a question is it normal to feel low whilst on mtx only i have never seen jordan this way before even on bad day's he always has a smile but this whole week he has seemed really dispondent.He had physio on tuesday which he really didn't want because he has been in so much pain she was good with him but told him that there is no easy way to get his joints less stiff he even told her that he was fed up. He has been in london over night on a school trip and this has just really wiped him out, does anyone elses child get like this :?: .
    thanks again jenny

    Hi Jordans mum,

    My son is also on mtx and has been for 11 weeks. He too is very low, in fact he seems worse now than ever. I feel so sorry for him and as a mum so helpless too!! Frankie is also anaemic at the moment so has even less energy. I too was worried about putting him on mtx but thought that the rheumotologist knows best. It doesnt seemed to have worked for him, we are back to the hospital on Monday to see what they're going to do. our certainly not on your own and i really do know how you feel. How old is Jordan? What hospital does he attend? JA seems more common in girls!! I just keep telling myself to be positive and it will all be ok!!!

    Frankiesmum
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    hi hun my 7 year old gets like this all the time lol
    too much activity wipes her and she gets low. Lucy's tends to manifest itself as anger too. She gets frustrated that she can not do all her brother and sister do. She gets fed up of having to work harder than everyone else to be 'normal'.
    Lucy has counsilling so that she has someone else to talk to outside the family, which has given her new ways to express herself at home!!!
    I know myself, having a long term illness which leaves me in intense pain, that pain itself can leave u low on energy and less tollerent of the rest of the world!!!!!
    I hope Jorden feels better soon x x x
  • jordansmum
    jordansmum Member Posts: 316
    edited 30. Nov -1, 00:00
    hi frankies mum and the rest of the gang jordan is 12yrs old and he goes to poole hospital they are so good to him there and the whole department seem so well organised i have a telephone number to ring if i have any worries as like at the moment and someone will always contact you if it goes on to answering machine.I am waiting for the consultant to get in touch on monday as i spoke to the registrar on friday afternoon telling her that jordan is tired and in pain she thinks he will put him back on steriods until the mxt kicks in so will let you know .Hope everyone is ok and having a good weekend xx jenny
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    jordansmum wrote:
    hi frankies mum and the rest of the gang jordan is 12yrs old and he goes to poole hospital they are so good to him there and the whole department seem so well organised i have a telephone number to ring if i have any worries as like at the moment and someone will always contact you if it goes on to answering machine.I am waiting for the consultant to get in touch on monday as i spoke to the registrar on friday afternoon telling her that jordan is tired and in pain she thinks he will put him back on steriods until the mxt kicks in so will let you know .Hope everyone is ok and having a good weekend xx jenny

    Hi Jenny - very glad you are getting great help. If it is reassuring Annie is still on the pred steroids with mtx and I know she wouldnt be coping without them - we start to reduce the pred very slowly in a few weeks time so hopefully by the time she is off it the mtx will have kicked but apparently there are no guarentees. It all takes so long - so fustrating when you are used to kiddies bouncing back after illness. Like you we are getting fantastic care for Annie and I am so grateful for that. Hope things went well for you today - is he managing school? Maybe the long break will also do him so good. Take care of yourself to. Lucy