View Full Version : Food versus Feed

27th April 2013, 09:27
Hi all,
as you may know, because most of my posts are weight related because of my sis losing so much weight) we have been devastated by the huge weight loss and the way that she cannot cope with the feeds, her tummy is too sensitive. well about 5 weeks ago she decided to swap the feed for food and began researching sites where they have recipes for highly nutritional food that is pureed and sieved to an nth of its life, before it is pumped (bolus) through the PEG.
For the last 3 weeks now she has maintained her weight. Psychologically she feels better because she can prepare the meals and then eat with her husband or anyone who is over, at the table and it is better for her tummy. When I phoned MND Connect they said about getting probiotics to help with digestion, so this we did and she adds the probiotic powder to water and it has helped her. Rachel at Oxford has said this is a good idea if it works for her, but her local dietician has been most resistant ...we had a meeting and my sis agreed to try the newest feed that was the most gentle on her tummy, well she did but it shot straight through!!so obviously she's not going to do that again! I did say tot he local dietician that she should phone MND Connect because they are the source of all the latest MND related information, I wasn't being rude and I hope she would have considered it.
We know that the dietician is worried about bacteria getting into the tube, and maybe a blockage, but also from reading on this forum I know that blockages have been caused by feeds or meds too. Sis is so careful with cleaning and flushing and I hope this continues to be good for her and maybe she will maintain and even put on a pound or two.

27th April 2013, 09:49
Hi Debbie,
Can't pretend to have any knowledge in this area,but it sounds like your sister and family have been remorseless in finding the best solution
to maintain weight.you have been given 2pieces of advice from 2 professionals.Sounds to me that with the precautions your taking and the fact that your sister appears stronger I hope too that she continues to gain weight.

You and sis have a great day xxxx

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