Should I tell them

illihor
illihor Member Posts: 283
edited 27. May 2010, 15:32 in My child has arthritis
When we next have an appointment with consultant that I think she might have had JIA longer than just over a year as we had previously thought.

Just lately I've been thinking back to how Kayleigh has always been and different things she would do as a toddler (so far we know she had it last April when she was 3 years 5 months old) but I've been thinking back lately to how she's always been and having a 19 month old in the house it's become very apparent at how different they have been at this age with things they do like tripping over kayleigh would still goes mental yet her younger sister and thinking back her brothers never acted like that even mr I'll cry at anything moan alot Nicholas (my 7 year old) has never had that deepness of pain she's always seemed to have. We would get her knew shoes which like every child loved them but she would then as to go in pushchair and take them off and sometimes refuse to ever wear again grr

It's silly things really that I've become aware of as to how different an 18mth/2yr old she was and could this have been the start of her problems not years later. I feel such a bad mum for missing it if that's the case though and obviously no one will know for sure and what's done is done so is there any point? It was only in august that the pain overtook her and she couldn't cope anymore that I took her back for a second opinion, up until then she never really said or did much and was a loaner of a child and didn't want to mix and clung to me all the time.

Sorry if a load of typos I'm on my iPhone lol

Michelle

Comments

  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    I don't think it will make any difference to her treatment if you tell the doctors or not. If telling them would make you feel better then do it, but what matters is that she is getting treatment now, no what went before.
  • emma01
    emma01 Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi, Your post really hit home to me, my 7 yr old was diagnosed a yr ago with systemic onset JIA, thought to be triggered by a bacterial infection, BUT the previous year I was beside myself with frustration, cos she was soo ultra sensative/reactive . and I
    googled, and sent for a book about sensory deprivation(apparently common in kids with autistic tendancies). My daughter was soo touchy about, toe seams in socks, clothes being too tight/scratchy , just seemed over reactive , had to wear clothes too big etc, so I have sympathies with you, have not actually brought this to the proffessionals attention, as i doubted myself, but I WONDER......... Wishing you well, Anita,

    e-mail is [email protected] if you want to pm me, x
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    emma01 wrote:
    Hi, Your post really hit home to me, my 7 yr old was diagnosed a yr ago with systemic onset JIA, thought to be triggered by a bacterial infection, BUT the previous year I was beside myself with frustration, cos she was soo ultra sensative/reactive . and I
    googled, and sent for a book about sensory deprivation(apparently common in kids with autistic tendancies). My daughter was soo touchy about, toe seams in socks, clothes being too tight/scratchy , just seemed over reactive , had to wear clothes too big etc, so I have sympathies with you, have not actually brought this to the proffessionals attention, as i doubted myself, but I WONDER......... Wishing you well, Anita,

    e-mail is [email protected] if you want to pm me, x

    This is exactly how she is and was even back then. She got more and more "delicate" (as I put it) and it was doing my head in. When I did reach out to the dr's about her I got told oh it's nothing be firm with her. She was a big girl to begin with 9lb 12 at birth (not by far the biggest i have had) but once she learnt to dress herself I was forever having to buy the next size up from what she was actually fitting into. She has nodules on her bones and i honestly can't for the life of me remember when they started growing as to me they've always been there. it's something they keep asking but i have no photos to show that they were there at any one time apart from june last year when i went to the dr about her to be totally fobbed off.

    I'm off for tonight but I'll pm and add you tomorrow got such a busy week here don't know whether i'm coming or going right now. Thanks for the reply though, nice to know someone else is feeling the same way. hugs

    Michelle
  • emma01
    emma01 Member Posts: 2
    edited 30. Nov -1, 00:00
    illihor wrote:
    emma01 wrote:
    Hi, Your post really hit home to me, my 7 yr old was diagnosed a yr ago with systemic onset JIA, thought to be triggered by a bacterial infection, BUT the previous year I was beside myself with frustration, cos she was soo ultra sensative/reactive . and I
    googled, and sent for a book about sensory deprivation(apparently common in kids with autistic tendancies). My daughter was soo touchy about, toe seams in socks, clothes being too tight/scratchy , just seemed over reactive , had to wear clothes too big etc, so I have sympathies with you, have not actually brought this to the proffessionals attention, as i doubted myself, but I WONDER......... Wishing you well, Anita,

    e-mail is [email protected] if you want to pm me, x

    PS Edited to correct" sensory deprivation" to "sensory processing disorder"

    This is exactly how she is and was even back then. She got more and more "delicate" (as I put it) and it was doing my head in. When I did reach out to the dr's about her I got told oh it's nothing be firm with her. She was a big girl to begin with 9lb 12 at birth (not by far the biggest i have had) but once she learnt to dress herself I was forever having to buy the next size up from what she was actually fitting into. She has nodules on her bones and i honestly can't for the life of me remember when they started growing as to me they've always been there. it's something they keep asking but i have no photos to show that they were there at any one time apart from june last year when i went to the dr about her to be totally fobbed off.

    I'm off for tonight but I'll pm and add you tomorrow got such a busy week here don't know whether i'm coming or going right now. Thanks for the reply though, nice to know someone else is feeling the same way. hugs

    Michelle
    :lol:
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    illihor wrote:
    When we next have an appointment with consultant that I think she might have had JIA longer than just over a year as we had previously thought.

    Just lately I've been thinking back to how Kayleigh has always been and different things she would do as a toddler (so far we know she had it last April when she was 3 years 5 months old) but I've been thinking back lately to how she's always been and having a 19 month old in the house it's become very apparent at how different they have been at this age with things they do like tripping over kayleigh would still goes mental yet her younger sister and thinking back her brothers never acted like that even mr I'll cry at anything moan alot Nicholas (my 7 year old) has never had that deepness of pain she's always seemed to have. We would get her knew shoes which like every child loved them but she would then as to go in pushchair and take them off and sometimes refuse to ever wear again grr

    It's silly things really that I've become aware of as to how different an 18mth/2yr old she was and could this have been the start of her problems not years later. I feel such a bad mum for missing it if that's the case though and obviously no one will know for sure and what's done is done so is there any point? It was only in august that the pain overtook her and she couldn't cope anymore that I took her back for a second opinion, up until then she never really said or did much and was a loaner of a child and didn't want to mix and clung to me all the time.

    Sorry if a load of typos I'm on my iPhone lol

    Michelle[/quote



    Hi Michelle
    My daughter, Annie has the Systemic form or JIA and just like you I am looking back and thinkng she showed signs early on. I think someone else mentioned socks and labels as causes of irratation - that is definitly true of Annie. She has always hated being cold and also the rain, she would just stand in it and cry if we were out and about - she stayed in a push chair with the cosy toes attached far longer than my other two children. I have been wondering if that was because she was harbouring this JIA. I also know about the awful guilt of feeling bad - it is so hard because you feel you could have done something as their mum for it not to have happened. I keep reminding myself that is the artritis but this is very hard.
    take care - lucy

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