weight loss

[michelagvolpe]

Is there anyone who experiences great weight loss after switching to external nutrition via PEG?

My brother who has had SCA1 ataxia since 2010, lost 10 kg (44 lbs) in 2 months. Now his weight is 40 kg (88 lbs).

[Jenandbeth]

This sounds awful. I'm sorry. The ataxias progress at such a different rate and I find it almost impossible to find out what to expect in the future. Beth already has more degeneration than many will ever have. I actually got put out a fb ataxia group for asking the question about how far the progrssion could go! I'm not sure how far my daughter will degenerate and I'm not sure if she will ever need a PEG feed, but I do work with children who are PEG fed for other reasons and I can confirm weight loss is an issue. I'm not entirely sure why but all children I have worked with have been routinely weighed and many have recieved build up products to prevent firther weight loss. I'd ask the professional that oversees his care what your options are. Take care and thanks for sharing this difficult journey I think it's important that this is a safe space to do. Jennie

[MBubble]

Hi, I also lost 10 kg, but it was longer period and due to the fact that I don't want to eat. 40 kg is very low, maybe try to constantly eat/snack, yogurt, dates. I also had body builder shakes as I was lacking nutrients

[7151]

Hi yes i ve lost 10 kilos