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I'm sending you a PM

SCID treatment is usually a bone-marrow transplant (BMT/SCT/PBSCT). My AS has had a bone marrow transplant, and while he was with me (although he was my foster child then).Will happily explain anything you like about BMT/SCT/PBSCT, including IVIG's and GVHD. SCID babes spend an awful lot of time in hosp.Midge

Hi Midge,If you could tell me what the abbreviations mean it would help..lolThe child we are thinking about enquiring about has had a BMT, but the expect he will need another. So anything else you are willing to share would be good as we would like to know as much as possible.What is day to day living like?Does your son get sick often?Do we have to be realistic about life span?Many thanksDory PM me if you prefer...

BMT-bone marrow transplant (matched cells from a donor)SCT- stem cell transplant (patients own cells harvested from the bone marrow)PBSCT- peripheral blood stem cell transplant (pateints own cells harvested from their blood)IVIG- intravenous immunoglobulin (a blood product)GVHD- graft versus host disease (donor cells attacking the patients cells)It's unusual for a patient to have more than one BMT, maybe previous was SCT? BMT is a lifethreatening procedure and isn't done lightly.HTH, have also PMd you.

I think one of the things that you need to consider really carefully is how you feel about living with constant uncertainty about the future, and a present that has many treatments and invertentions. This is by no means impossible but it is very, very wearing.Queenie

Hi,Sorry only just come back to this thread.My AS was a leukaemia child not a SCID, so different circumstances apply. It would be hoped that a BMT from a related or unrelated donor would effect a cure, to need a second (as Catswhiskers says) is unusual and would suggest the first transplant didn't take.A transplant (of whatever sort) is a massive undertaking and itself carries risk of death. The transplant centre my AS used has a pretty good success ratio at about 65-70% survival rate, some are less. A minimum 6-8 week stay on hosp which can extend to months, and post hosp isolation of several months (AS's lasted 5 months after a two month hospital stay where I lived with him on a pull-down bed).Newcastle is well regarded as a SCID transplant centre IIRC.I'd talk to the SCID charity (google them) and find out about stats and the experience of living with a SCID child. They would be the best people to advise you on the daily realities.BW, Midge

Thank you for your posts and all the information it will be very helpful!!Dory

Thanks for the info Mrs Reg,All info we recieve is very much appreciated.We have actually decided against following up this child as one more suited to us has come to our knowledge.I am sure this info will be very useful to someone else thoughDory