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  • Hello everyone, I’m just posting an update on my son. Over a year on and my son has continued his quest to see every specialism in the hospital. He is generally improved but his life and recovery have been blighted by multiple complications. He has been very lucky to have had good follow-up despite Covid, but is struggling…
  • Hope your little fellow is doing well after his transplant and you are coping with hospital life. All the best.
  • Hello Steve, thanks for your reply. He just doesn't feel very well, I'm afraid, but since I posted has been able to get a little food down and keep it there, though I am still really worried that he isn't able to have the nutrition he needs to recover. The hospital recommend NG but he has refused after some horrible…
    in Nausea Comment by MotherAA March 2020
  • Steve, you are really kind, thank you for replying. The docs think the mouth pain is as a result of side effects of ciclosporin. Our dentist says it is Acute Necrotising Ulcerative Gingivitis. It is definitely improved after a course of antibiotics and weekly trips to the hygienist, and all the (gentle) brushing and mouth…
  • Ten days on and my son is slowly picking up, though has been through the mill again. There was apparently a disagreement between the two hospitals as to whether his needs were acute or chronic, with him in the middle in continuing pain and not eating or drinking. Eventually an apology was made and a more realistic drug…
  • Hope you are beginning to recover some energy. January is a very long month, especially when you are under the weather. Enjoy holing up when it's dark and wet, then try to get out in the sunshine (if we have some!) when you can. All the best.
    in RSV Comment by MotherAA January 2020
  • Wishing your son all the best for his transplant, Hayley. It is a worrying time but he will be well looked after. Make sure you have some good things to keep you occupied in the hospital, too, and every day find some things that are positive, even if they are small, to keep you going. Laughter really is the best medicine.
  • Things have unfortunately been utterly miserable for my son who has added new infections and antibiotics to his tick-sheet and is very low. Frustratingly the psychological service can only offer help with dealing with the pain in ten weeks' time, which is so unhelpful as to be laughable. Symptom control have been…
  • Thank you Steve and Hayley. I am sure things will improve, and we are lucky to live in a village community and have a supportive family and workplace. My concerns are mainly for my son who does not have many local friends and whose school friends are now away at university - though social media is fab for him. I'm not sure…
  • I'm sorry this has gone off the worry topic. It comes in waves. Of course it's good to do all those things that keep you going, like treats, and exercise, and fresh air/nature, and friends. But I do feel like a coiled spring at times, and that's very wearing. But I suppose we all just need to keep going.
  • Hi, Clare, my son was told he would need a transplant on 30th October 2018. He has three siblings so they were tested, but were not matches. I think that by mid November we knew that there were a number of potential unrelated matches, and that some would be screened. We didn't get any updates but as the hospital was…
  • Hi, Hayley, thought I would check in, though not sure if this ought to move onto another thread now. I think the recovery time has been so much more difficult than treatment for my son. It's difficult to know if he is in any way unusual, but there have been a lot of complications, with a few admissions for infections, and…
  • Thanks Hayley. The numbers have been improving but he is now struggling with GvH. Feeling like we are going backwards, with son nauseous, not eating and fed up on sofa, and a sudden increase in tests and appointments. Of course that's great, they are trying to sort him out. But it still feels like the edge of a cliff again.
  • So sorry to hear this sad news. Thank you for letting us know the outcome for your brave Bob. He couldn't have had better support than yours. Be gentle with yourself as you live with your loss, I hope you are supported yourself.
  • Hi, folks, thought you might like an update. My son had a second transplant of stem cells from the same donor and has been doing well since. His platelets and Hb are just below normal range at day +90 since the second transplant. White cells and Neuts a bit sluggish, so hoping those will gradually improve. Very grateful…
  • Hi Sean and anyone else out there, thanks for your encouragement. White cellls better than platelets/Hb, another trephine due, consultant unimpressed by numbers and talking about a top up. So really hoping that even a little bit of late activity might start showing.
  • Wishing your son and your family all the best. What a terrible time for you all, made more difficult by the delays and complications with various treatments. So pleased you have found a new consultant and hoping the new possibilities will help.
  • Hello Gabby, hope your son is making progress. Mine is very fed up - went back into hospital six days after discharge with gut issues/ infection. Think he must be getting better as he's getting crosser! The medication really doesn't help - hoping to swap some of the worst ones for others, but it's tricky when you want to…
  • Just thinking of you and your partner. All the best.
  • Hi Gabby, I hope that all is going ok for you and for your son. I really feel for you and am glad that you have found working helpful.. My son is still in hospital, currently on day 25 I think. I'm not as panicked but had to stop work again as it was too much. It has been easier just focusing on the hospital things, and I…