hes faking it!

lelesmummy Member Posts: 14
edited 18. Mar 2014, 11:00 in My Child Has Arthritis
hi all, ive posted a few times on my own experience of dr's and my PRA. now im struggling with my son and im heartbroken.
a breif history. basicly my sister brother father and grandmother all suffer with PRA. my mum had years and years of dr's telling her we were faking it and that she didnt love us enough and the pain we were suffering was an attempt to get attention. finally my sister got diagnosed by an american dr when we were living on an american airbase in germany. my brother got diagnosed by a dutch dr when he had blood poisioning aged 9 and the results showed some high RF. i never got diagnosed as a child as i was away at boarding school and somehow it got missed. fast forward nearly 20 years and my GP has ordered an anti CCP test and is finally taking me seriously.
anyway back to my son. hes 9 and for the last few years hes suffered with serious pains in his knees. mainly his right one but sometimes the other and occasionly both. hes crippled by it. his knee swells up and becomes very very red and hot to touch. i normally treat it with a ice pack or heated beanbag depending on his choice. sometimes we give paracetamol and if it gets really bad some ibuprofen but as hes asthmatic we go careful with the ibuprofen. finally this month his teacher took me to one side and told me he was suffering after swimming and sometimes he would just end up crying randomly because he knees hurt. so i took him to the gp. straight away she said given the family history she was refering him to a pead. she prescribed some painkillers for school and i felt we were getting somewhere.
last week we went for his paed appointment and i came out crying. basicly her opinion is that PRA is not hereditary, doesnt even run in families and she even implied that PRA is not even a real illness and is just like IBS, something you say when you cant label the problem as anything else. she told me that because i was making a fuss, he was saying it was worse. she inplied he was not doing enough exercise and that was way he was stiff in the knees. he told her he does fottbal once a week, swimming once a week, cricket twice a week, and agilty and balance club 3 times a week, and that he also loves to play dodge ball when he can. she said 'oh good keep that up' and then moved on as if he hadnt really done these sports weekly. she then told me to stop giving him painkillers, stop making a fuss and hes faking it. she asked me what exactely she wanted her to do, and i replied im not sure but i know hes in a lot of pain. i even told her my mothers experience to which she told me, well the dr's then might have been right, implying that me and my siblings are indeed faking it.
im at a loss as to what to do. she is writing to my GP to explain that in her opinion there is nothing wrong, and knowing my GP she will take this as gospel and will not help much more. how on earth do i get anyone to listen.
i understand that given my experiences as a child, i might be seeing things in my son that arent there. but i am not making this up, and my son is in agony when the pain comes. he is not the kind of child to make this up nor look for attention. in fact he hates it when i discuss it with his teachers. what do i do now?


  • lelesmummy
    lelesmummy Member Posts: 14
    edited 30. Nov -1, 00:00
    also i should point out that technically PRA is not known in children and i understand this, however something is going on and surely it should be investigated. if anything i would say my son might be suffering from juvnile arthritis.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    This doesn't sound good, I am sorry. My arthritis was ignored for a few years by my then GP which I am sure has led to the mess I am now in. Could you clarify something for me, please? What is PRA? I feel I should know but I don't remember that set of initials. :oops: It's rare for children to fake illness 'properly', I'm sure we've all witnessed the 'My tummy hurts, I don't feel well' thing only for said poorly child to make a miraculous recovery after they're told they don't have to go to school.

    For what it's worth I think there is, obviously, something going on and it may be that your GP referred you to the wrong person. I would have thought that a rheumatologist was the obvious choice so ask for that. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lelesmummy
    lelesmummy Member Posts: 14
    edited 30. Nov -1, 00:00
    hi thanks for your reply. PRA is palindromic RA. its not known to run in families at all and is not seen as a type of arthritis that children suffer from. juvinile arthritis though is a huge umbrella term basicly covering all types of arthritis as far as im aware, so PRA could come under this umbrella term.
    my GP is insistent that my son needs to see a paed dr to be refered to a rheumy.
    im pretty sure there is no faking or even playing on the pain from my son as he hates having time off school for anything and even gets annoyed at routine dr's appointments during school time. also as this is something i live with as do my family we tend to be sympathetic but encourage him to carry on as best he can and really make no fuss, so im not sure he is doing it for attention. im frustrated that the dr can just decide in a 10 minute appointment that my son is faking it. she doesnt know my son at all. if it was my 11 year old i would be inclined to agree as he is a drama queen and does love the attention.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    From what you've said several family members have a disease which isn't supposed to be hereditary. However, you yourself are being givem the anti-CCP test. I think, in your situation, I'd be pinning my hopes for my son on this ie if it turns out that you yourself have RA or some other form of arthritis with a hereditary component, your GP will probably be more inclined to refer your son to a rheumatologist. Or, you could just try to get him a referral by changing GPs.

    How are you, and other affected family members? If you've had RA, or another similar form, for many years with no disease modifying meds, you'd be lucky to have no deformities.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • lelesmummy
    lelesmummy Member Posts: 14
    edited 30. Nov -1, 00:00
    thank you i am actually hoping these tests ive had do come back showing something, as mad as that sounds. to me knowing is better than the guessing that is happening for me now. my brother and sister are taking MTX and i think maybe SSZ.
    my sisters PRA has now started to show signs of becoming full RA whereas my brother and myselfs RF is sometimes very low so the dr's are still causious when treating it. PRA has no lasting side effects and each flare up is single and does not cause damage to the joints. from the sounds of it your very knowledgable about arthritis so for just the learning side of it, i would suggest reading about PRA, its not as well known as most other forms of RA and is hard to diagnose.
  • HannahT
    HannahT Member Posts: 38
    edited 30. Nov -1, 00:00
    I really feel for you! It is so frustrating when you can clearly see your child suffering with a suspected condition. You visit the GP and expect them to take note of your family history, his symptoms and give you a diagnosis. If they aren't able to, then at least have blood works done to see if something comes up there. As the others have written before, there is definitely something going on. It is to much of a coincidence that his mother, aunt and uncle all have PRA.

    Do try to get a second opinion and perhaps insist on seeing a specialist.