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  1. CDJ

    Neutrophil count

    I have just got home from work to an email from the IBD team saying that Josh's last bloods show that his neutrophil count has dropped, and to stop the azathioprine straight away, and to get repeat bloods done in a weeks time. This really concerns me as it sounds pretty dramatic and also Josh...
  2. CDJ

    Infliximab and Isoniazid and Pyridoxine

    I thought that I would start a different thread from the "starting Infliximab" one that I already have running. As you are aware, Josh started Infliximab yesterday which went well. Due to him have two indeterminate blood tests beforehand for TB he now has to take Isoniazid and Pyridoxine along...
  3. CDJ

    Starting Infliximab

    Josh is starting Infliximab on Wednesday. It seems to have taken us an age to get to this point as he has had two positive quanterfeon tests, but this is now going ahead with him taking medication along side this. I am very apprehensive about starting Infliximab with all the risks etc...
  4. CDJ

    2nd quantiferon test

    Josh's 2nd quantiferon blood test came back indeterminate again. Apparently this means that Josh has had contact with someone who has TB somewhere along the line. This is not the result we wanted as it delays the Infliximab yet again. The consultant is going to talk to a microbiology doctor...
  5. CDJ

    Quantiferon test

    Josh's quantiferon test has come back indeterminate which means they need to repeat the test before they will start Infliximab. We had been building ourselves up to him starting Infliximab and it's annoying that he will need to have the test done again first, it just means more delay. They...
  6. CDJ

    Understanding results of MRI scan

    We finally got the results back from Josh's MRI that he had done at the beginning of November. Somehow these had been lost until now :( Anyway, results show enhancement and thickening of the jejunal bowel consistent with significant jejunal inflammation. Can anyone understand exactly what...
  7. CDJ

    Starting infliximab

    Josh is still flaring despite taking steroids [ prednisolone ] for the past 6 weeks. We had thought he was doing better, but since he weaned down to 30mg his symptoms have all returned. We have now been told that he will be starting infliximab after all tests are done beforehand. Then...
  8. CDJ

    Flaring again?

    Josh was in hospital in September due to flaring. It was found that he now has proctitis and he was prescribed Salofalk foam enemas, this was at 2g per day [ as well as his other meds. He used these for 6 weeks which really helped reduce his symptoms. He was then put on 1g a day and since then...
  9. CDJ

    Update on Josh

    Just thought that I would do an update on Josh to let you know how he is since he has been out of hospital last week. The emema foam seems to be working :o Josh is does it himself really well. His bathroom visits have decreased hugely this past week, going from upwards of 15 times a day to...
  10. CDJ

    Hospital again

    Josh was admitted to hospital again on Monday after getting severe stomach pains and opening his bowels 15 times in a day. These symptoms have now been going on for around 6 weeks or so. They are going to do a colonoscopy again, though as they found crohns in his small bowel last year and...
  11. CDJ

    Missing school and extra work

    Josh is still flaring badly at the moment, mornings especially are bad for him, he is in and out of the bathroom 7-8 times and getting severe stomach cramps. Because of this he is missing a massive amount of school. We are in the UK and he is in year 9 which is a really important year. I...
  12. CDJ

    In hospital again

    Well, that's Josh in hospital again. Flare up has got worse as the week has gone on and he was admitted today. His bloods still show raised levels of inflammation and he has lost 1.5kg in weight. They are monitoring overnight and then possibly putting on iv steriods tomorrow. I sometimes...
  13. CDJ

    Possible flare up?

    I am getting increasingly worried about Josh. He has so far missed one and half days off school this new term [ only started back last Wednesday ]. He is getting increasing pain in his stomach and opening his bowels 7 - 10 times a day --- this has gone up from 1 -2 a day since July. This...
  14. CDJ

    Stress of a new school

    It should be Josh's [13 ] first day at high school today, but he has been very nervous about this over the past few days and his crohns is playing up big time:( He was meant to get the school bus this morning, but was instead on the toilet! He has been going about 8 - 10 day for 4 days so far...
  15. CDJ

    Good news

    We had Josh's routine hospital appointment today and have been told he is in clinical remission :) Such good news after all the problems he had last year. It seems to have taken us a long time to get to this point. So one very happy mum today :) Even better news for Josh is that he has grown...
  16. CDJ

    Toronto parents

    Josh [13 ]and I are flying over to Canada 25 July and will be staying in Toronto [ Western Battery Road ] with my elder son. We will be there for the first weekend 26-27 July and then back again 7/8 August. Just wondering if anyone wants to meet up for a coffee and chat? It would be good to...
  17. CDJ

    Taking exams and crohns

    This is mostly a question for parents in the UK. Josh is still two plus years off taking his GCSE's, but today I have been in invigilatoring at the school I work at and it has got me worried as to how our children cope with taking exams. I asked what happens if the children go to the toilet...
  18. CDJ

    Going away with school

    My son is due to go away with his school tomorrow [ unearthly time of 1.30 in the morning :( ] to France for one week. He has been looking forward to this for months. He is at the healthiest he has been in a long time and I have no major worries , apart from the normal ones, of him being...
  19. CDJ

    Postive hospital visit

    Not long back from the hospital, very postive visit for a change! They are really pleased with Josh's progress. Josh as finally started to grow, weight now stable. Grown 2.5 cm in 3 months, he is very happy as that means he is now taller than me! [ not that it takes much :) ] I am just...
  20. CDJ

    Iron levels

    I had a letter from our hospital from last months consultation visit [ always takes 5 - 6 weeks to come through ]. It says that they want Josh to start on Ferrous Gluconate 200mg, but state he isn't anaemic. I have spoken to the pharmacist and he tells me they don't do 200 mg of Ferrous...
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