tom needs an urgent mri scan

lare73
lare73 Member Posts: 154
edited 30. Mar 2012, 10:08 in My child has arthritis
hi,

just wondering those with children with non active Jia if they have had any problems?
tom is on embrel 50mg a week and its doing a good job with the JIA, went to clinic yesterday for check up, no active arthur, no fluid no pain!
anyway, tom has lost 6kg, has little appetite, super tired, gets dizzy occasionally and feels weak, this passes after a day or so, then comes back a week or so later, being going on a few months.
so, docs, took blood.
got phone call this morning, toms bloods are all out, very high platlets, crp and esr, so needs MRI asap to check things. He has had no colds or infections so a little puzzled.
any thoughts? xxx

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello lare, it's nice to hear from you but I am sorry it is under such circs. I have two thoughts. The first is has he been having regular blood tests whilst on the enbrel? (I had to have them fortnightly when I was taking it. ) The second thought is this: ((())) to you both. DD
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Hi Lare,

    Sorry to hear Tom is not well. Pip has been on Enbrel for 2 years. She's in remission from the arthritis too. She's not had any of the stuff that's going on with Tom - her bloods at her last appt in December were all clear. She's been unwell for the last few weeks - tired, grumpy, no energy, but after 2 years I don't think I can blame the Enbrel.

    Good luck with the MRI - let us know how he gets on.

    Andy
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    Hello Lare. I do hope it goes well for Tom. I'll be thinking of you both.
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    Thank you everyone for your replies, i very much appreciate it.

    i have not told tom that his blood tests were concerning and he needs a scan, thought id wait until the appointment comes through.

    he has no obvious inflammation so a bit worried really, he is very tired lately and rubbish appetitie. hopefully nothing too serious, rheummy seems to say maybe be small bowel, but he has no symptoms, so suppose he's just ruling it out. Hoping lymph nodes are all as they should be and then i can relax.

    will try keep you updated, and thanks for your support once again. xxx

    ps, thanks for the hug dd xxx
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    It has to be such a worrying time for you, Lare, as we Mum's do natter about our kids more than we do about ourselves. I hope the MRI comes quickly and the results and I hope it shows nothing too traumatic for you both. I'll be thinking of you.
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Me too - Hope quick action and results are encouraging.
    Can't say I have any experience of such things with my daughter but am always worried about bloods being off but also aware it can be down to so many things. As you'll know, the CRP (C reactive protein) and ESR (Esrythrocyte sedimentation rate) are generally raised in the presence of inflammation / infection., also true of high platelet count i think.
    Just need quick response from the docs and MRI to reasurre you all is well. Until then, I guess just gently prepare Tom for the MRI and use those around you to support you the best way you can. I check in regularly and will be looking out for more posts from you and will happily support you any way i can. In the meantime, I'll be hoping you get the results soon and all is well. Thinking of you both.
    Sam. x
  • cheekygirl
    cheekygirl Member Posts: 128
    edited 30. Nov -1, 00:00
    hi hope you ok just to send a big hug for you and tom .i hope all goes well at mri please let us all know how you get on .take care :D
  • cheekygirl
    cheekygirl Member Posts: 128
    edited 30. Nov -1, 00:00
    HI ALL HAS ANYONE HEARD HOW LITTLE TOM IS AFTER HIS MRI SCAN .BEEN CHECKING BUT CANT SEE IF ANY NEWS , HOPE HE OK XX
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I don't think he's had it done yet, cheekygirl, I think lare said something about waiting for the appointment to come through. Our Tom, bless him, ain't that little any more! :) I remember seeing a pic of him on here about 18 months ago (his Ma organised a fabulous fun day to raise money) and I reckon he is now a teen. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi there

    thank you for checking for us.
    waiting for appointment, said it could take a couple of weeks.

    still not told tom about his blood results, he isnt well and i dont want to add to his stress.

    lol cheekygirl tom is 14 hun, not so little, tall skinny thing though.

    i keep you all updated....take care xxx
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    tom has been admitted to hospital today, he is deteriorating daily.
    very worried.
    clare x
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    I'm so sorry about this. I'll be thinking of both of you. PM me if I can be of any help. ((( )))
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Let us know how he gets on. Thinking of you.

    Andy
  • cheekygirl
    cheekygirl Member Posts: 128
    edited 30. Nov -1, 00:00
    lare73 wrote:
    tom has been admitted to hospital today, he is deteriorating daily.
    very worried.
    clare x
    oh i pray he ok .we thinking of you all .lots lov and gentle hugs xxxxxxxxxxx
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Just checked in to see if you had any news of appointment yet and so am devastated to hear Tom's not so well and has been admitted.
    We are all thinking of you both and hope he is feeling much stronger soon.
    much love and my very best wishes to you all. Look forward to hearing much more positive news ASAP.
    Wish I could send a virtual hug which would actually give you the comfort you need right now - hopefully you have someone who can help you with this close to hand.
    Sam. xxx
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    do not pop in here often but so sorry to read tom not well leaving ((())) and positive vibes to help you both through this hard time it so hard to know whether or not to tell them about the results but at 14 he probabully knew all was not well and did not like to mention it to you so as not to worry you take care val
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh no, oh lare how are things now? I missed this thanks to a mega-flare but I send you both hugs and love, and I sincerely hope we hear some better news from you soon. You are both in my thoughts. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    Hi everyone.
    Thank you for the kind posts, i appreciate it a lot.
    so tom came home yesterday after 7 days in hospital.
    He has severe bowel disease, they think its crohns disease and are awaiting biopsy results to also rule out malignancy.
    he is now on a liquid only diet due to three parts of his bowel being ulcerated, inflamed and very diseased. this may be for 6-8 weeks.
    he has lost 10kg in 8 weeks now, he is very weak and skinny BUT he continues to smile and inspire me with his bravery.
    they are talking of changing him from embrel to humira as it can help with both diseases, and commented how shocked they are with his lack of complaint. they also said there are only 4 other children in the surrounding areas of the 2 hospital who are unlucky enough to have both conditions, it is rare apparently in children, and more severe than what adults get.
    I saw the colonoscopy report and pictures and it looks horrendous, it made me cry.
    his mri is now on the 10th april to check the parts the cameras could not reach.
    our aim at the moment is to build up his strength so he can join in everyday activities and go back to school, he is fretting as he has important exams in may, school are being good.

    thank you again everyone x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    OMG. Your poor, poor lad, what he must have been enduring. That is one of the dangers of our lives I think, we become so used to pain and discomfort we don't think much about matters when stuff worsens and often we try to tolerate the intolerable. I am so, so sorry for him and you too. What a shock for you both. I dunno what else to say really, I know there are some adults on here with Crohn's, perhaps it would be worth posting on LWA to see if anyone has any tips or ideas? As you probably know not many look in on here. Once again, I am so sorry. (()) DD
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    I can only echo what DD has said. You sound calm but you must be out of your mind. Yes, it's good to have a diagnosis, and something to treat, but poor Tom! What he must be going through!

    The son of a friend had/has childhood Crohns - admittedly without the arthritis. He was very bad and there were several hospital admittances but he is now as healthy a - married - adult as possible with such a disease.

    I shall be thinking of you both. (())
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Tom's bravery and tolerance is truly inspiring! (Yours also...)
    Continue to think of you both, thanks for the update have been checking in regularly to see how he is.
    Best of luck with the rest of the tests.

    Much love
    Sam.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi Lare and Tom, I am thinking of you both and I hope all is as well as it can possibly be. DD

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