Tom's update

lare73 Member Posts: 154
edited 14. Apr 2012, 15:09 in My child has arthritis

Just thought I'd pop on to give an update.
Tom was re admitted to the LGI last week and was ng tube fed for seven days, he tolerated it well eventually.
He was discharged on tuesday this week and had tube removed. His is on oral steroids now and eating well.
His diagnosis is severe Crohns Disease. It's in his stomach and three parts of his bowel. The JIA is still quiet thank goodness.
The doctors are changing him from entanercep to adalimiunb. Just waiting for confirmation of funding.
He has been very I'll but once again he has shown how brave and mature he is and I am very proud of him, I know if it was me I would have been an emotional mess.
So, we are waiting for MRI scan results to see how extensive it is in his small bowel, the large bowel is affected too.
I cannot believe how unfortunate he is to have two auto immune diseases, the doctors said it is rare for children to have both more common in adults but milder.
Anyway, hope your all well and your loved ones are safe.
Clare xx


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh Clare, I am so very, very sorry to read of your poor lad's continuing ill-health. What a terrible time you and he have had, and what fortitude he is showing. There are quite a few adults on here with Crohn's as well as inflammatory arthritis but this a double-whammy that neither of you deserve. Gosh, I am upset. I'll come back when I can think of something better to say. Hugs to you both. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
    Thanks for the update, Clare but I'm so sorry to hear that Tom also has severe Crohn's. He is an example to all the way he copes with all this rubbish and you, too, must be finding it extremely hard but don't complain.

    I'm glad the steroids are helping and I do hope the new meds will too. You both very much deserve a break. Please keep us in the loop.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
    Just wanted to send some (((hugs)). It must be so difficult for you all.
  • worriedmum
    worriedmum Member Posts: 72
    edited 30. Nov -1, 00:00
    Thanks for keeping us posted. I've been checking in regularly waiting for an update. Even told colleagues about this really brave boy and his mum...
    I hope you're both getting lots of support and can enjoy being at home together now and start tackling this new and unfair twist to his future.
    Best of luck, Sam. xxx
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Thanks for the update Clare. I hope the drugs do their stuff for Tom and he's feeling better soon. Best wishes to the whole family.