I thought this might be a better place to post this... can anybody help???


Okay, we have now decided to make the move home back to New Zealand (Nelson) with our gorgeous daughter with special needs, She has a rare metabolic condition known as congenital disorder of Glycosylation 1a, She had life threatening reflux as a baby resulting in TPN dependancy for much of her first year of life, Now at 3 1/2 she is tube fed via gastrostomy (AMT mini) had a fundo which has now partially unwrapped, and she has a Hiatal hernia. Other medical issues include Nephrocarsanoma, Mild Liver Cirroshsis, bowel dysmotlity, history of pericardial effusions resulting in a window, Hearing loss, vision loss, the list goes on, she has mod - severe global developmental delay and still can't sit, she is a very happy go lucky child though. I am glad to her DR Abdrew Day a GI is now working out of CHCH... making our move easier but I worry about so much. The move is right for us but she is just so complex and we will be without our safety net (Sydney Children' Hospital) She has been stable with all issues for awhile with only a half dozen admissions to our local hospital last year so the timing is right.

She takes 40mg Losec, 7.5 mls Zantac daily, Vallergan, Domperidone, Her formula is PEPTI JUNIOR

ANYONE IN NELSON WITH A MEDICALLY COMPLEX TUBE FED CHILD???

I am leaving behind good respite care services, family support services, and a team of medical experts going into the unknown, would be great to touch base with others in the South Island!!!

Hi there. Sounds like you have a lot to deal with I have no experience/knowledge with any of your DD's problems but just wanted to say that I live just out of Nelson and would love to help in any way I can. PM me if you like. I have two friends who are nurses at Nelson hospital too.