Dear Kirsten, I don't know if you will be able to answer this but perhaps you can tell me where to get help. My question is surely it must be possible to feed someone reduced calories, but still give them the essential nutrients they need, and also if someone is gaining weight surely it follows they are getting too many calories? Is there such a person as a dietician who specialises in nutrition of the seriously handicapped and if so how do I find one?
My daughter is 26 years old and has cerebral palsy, she is profoundly handicapped. she has spastic quadriplegia, so moves very little and she is tube fed. everything was fine and her weight was stable until she moved to adult services , the adult dieticians insist on looking at her weight and height and gauging what she needs to be fed using charts designed for more active individuals, she has gained over 8 kg in the last 6 years, and it is now becoming an issue. Not only is she carrying excess weight, which puts pressure on her internal organs, but the expensive equipment we have fought so hard to get for her, the specially moulded wheel chair, the leg splints etc etc, may soon be too small, and then we will have to fight for them all over again. Last year I had a heated discussion with the community dietician, I asked why it was acceptable to force feed a person so they continued to gain weight if they were disabled, when it would be considered abuse for a 'normal' person. I did get the amount of feed reduced, but she is still gaining weight, just more slowly. I have asked for a review, but have been told there is along waiting list and she is not a priority.