Mads Gastrostomy and UK BBC2 Horizon programme

[Guest guest]

Hello everyone,

Just thought I'd give you an update on Mads' care. She is going to have her

gastrostomy on Wed 24th November at Great Ormond Street.

Since she is less than 6kg (she is 5.7kg aged 13 months) she was supposed to

have the surgical team to do the procedure, but as her weight is close to 6kg

the tube will be put in by a team called something like " invasive radiology " , it

is still under a general anaesthetic, but Mads will have to have a barium meal

with us at the hotel the night before.

The endocrine senior house officer said she is likely to be out of hospital by

Friday evening, and will be OK to go to nursery the followin Monday. We will

have some education on how to use the " peg " at the hospital and a visiting nurse

will visit us (not sure what for or how often) after the operation. I think the

peg may then be changed to a button by a further operation a few years later if

it loks like a long term need.

Can anyone tell me what to expect from the operation and whether this ties in

with your experience?

Thanks,

Gillian

PS - Did anyone in the UK see the Horizon programme " Ghosts in the genes " on

Thursday night - very interesting. It was about " epigenetics " , which is a

branch of genetics that has uncovered evidence that a Mum & Dad's experience or

even a Grandma and Grandpa's experience at the time their eggs and sperm were

produced (such as famine and stress) can cause alterations in how the genes

behave, which can then be passed onto their children and grandchildren. I think

there is a really good chance this might explain RSS.