Seeking Alpha 1 Sufferers treated at Leeds General

[FinleysMum]

Hi, looking for other parents who attend Leeds General as we take my son whos just turned 1, who was diagnosed with Alpha 1 at 12 weeks. Initially when he was admitted at first before his diagnosis they were brilliant, but not finding things to be great now with missing apt letters, no real support etc.Everyone that I read about seems to have nothing but good to say about Birmingham and Kings. Just looking for some feedback to reassure me or confirm my thoughts ??Thanks Hannah

[Lottie19]

Hi, my daughter has biliary atresia and is being treated at Birmingham and at the moment I'm not too impressed with the service. The liver unit was great when we were in hospital but just today we have had a letter cancelling an appointment with no reason and saying contact our gp for more information. We have been told contradicting things this last week too which is not great when all you want is support at a worrying time. Rest assured its not just Leeds that are unsupportive at times! Hope the care improves soon for you and your son. X

[ckjm]

Hi there. I have nothing but praise for Kings College. My son who has alpha 1 was diagnosed at 7weeks and is now 14. He is lucky enough not to have needed a transplant and, after our initial scare, has been very healthy since a toddler. The nurse specialists, dietician, consultants - well actually EVERYONE we have had contact with over the years - have always been brilliant. My son has only needed to be seen in outpatients annually for some years now, but the level of care has never diminished. In fact, when my son was in year 6 (aged 11) we saw the consultant who happened to ask how things were at school, and about moving up to secondary school. I blurted out my thoughts on the matter - my son being ADHD and dispraxic - and how we felt let down by the education system. Well, that was that - our consultant was so outraged that a proper educational psychologist assessment had never been done by the school (he had strong feelings about education) that he organised for my son to come and see one of their paediatric clinical psychologists for an assessment. She produced a report with recommendations for educational/physical aids for my son (eg mentor, sloped writing board) that I was able to provide to the school in the July before he was due to start! Anyway, as you can probably tell from my going on, I will never be able to thank Kings enough for all their support and continuing care.

If you feel a move is needed, we mostly had dealings with consultants Alistair Baker and Dino Hadzic ( Dino being the one who organised the psychologist), but they are ALL good of course. Take care and best wishes for the future x

[Luckyman]

Hi there my son has alpha 1 and was under Birmingham untill he was 11

Then we was forced to leeds with no choice and we were not very happy at all . James had his transplant when he was 13 which was 7 years ago . The care we had was very good . James is doing very well . Just be careful and dont believe everything they tell you .go with you gut instinct. We have 2 sons that they gave the wrong treatment to save money and are living with a time bomb inside of them . Good luck .

[FinleysMum]

Thanks for your replies, it's so hard to know what to do for the best, especially when you put all your faith in the medical profession. Just desperate to find people,in the same position as its so hard not knowing anyone who's going through the same!x