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 washing. But progress is slow and even water is still painful. He is limited too by ongoing nausea and gastritis and it’s a real challenge to get the calories in, but he did enjoy watching the rugby at the weekend with friends.
My son has now seen a psychologist, and has another session booked, which is great as it’s tough dealing with such a long illness, and particularly hard when the parameters of the illness are constantly extended. I think to begin with he was assessed as an adult and told 10 weeks, but the team at the hospital managed to organise something sooner when they realised how much he had gone downhill. Now that things are improving for him, we are all much happier.
So we are keeping going and looking forward to a more normal life.
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 with serious pain and increasing mobility problems of AVN which affects everything. He has (thankfully mild) GVHD in various sites, and he has had a winter of serious mental health problems. The good news is that his bloods are into normal ranges across the board, so that is brilliant.
I do believe that eventually he will be able to move on with his life but it’s still a way off. It’s very hard for him (even with his support) and we do wonder if it will ever end.
Hello Mother AA
I don’t think we have interacted before, I am Michelle, one of the commumity champions, I started with the team last year.
Great to have an update, thankyou for that. I have read through your previous posts and i can see what a challening time it has been for you and your teen. I am pleased to hear the GVHD is mild, equally it can still be irritating and frustrating. I hope your teen is managing it ok.
The journey post transplant is certainly different for everyone and some have more complications than others. This can take its toll on some, especially teens who just want to get back to ‘normal’ and continue the ‘teen life’ ?
It is understandable your teen is experiencing significant mental health challenges and i hope they are getting support from the right places. Myself, I had a traumatic 3 year period on treatment and in out of hospital every 2 weeks, thinking i was safe when really it was always a false sense of security as I would decline a week later. With constant needs for transfusions, IV treatments and the difficulties explaining to A and E Drs about my condition alone, was tough. I can empathise with your ups and downs in regards to those aspects.
I had my Allo SCT in January 2019, my first failed and had a second in the May of 2019. The 7 month stay i ended up having was horrendous and i have been left with PTSD. My mental health since treament starting in 2016 declined rapidly.
The decline i experienced was triggered by medications (high dose steroids). I am far from a teen but there is some light at the end of the tunnel. I am 2 years 4 months post SCT (6 years sonce diagnosis (which is surreal) and I am starting to get on top of the complications from chronic fatigue syndrome to eye sight issues and complex regional pain. Also with alot of support my mental health is progressing well and I am now well enough to be able to give back to communities such as this one.
It can all take time and i know that can feel like it is forever extending as you just want to see your teen happy and well within their physical and mental well being. Time can do alot. There will be alot to process which, guess what? ? Takes time
But it does get better!
All the very best,
Michelle