Dietician for my daughter with CP

System

This discussion was created from comments split from: Hi, my name is Kirsten, ask me questions about diet and nutrition.

mary33

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.

KirstenNutritionAdvisor

Sadly, this isn't my area of expertise, I understand your frustration and would advise you to go back to her GP / consultant and ask for her feed to be changed explaining the issue, her weight gain and the impact of this on her life. They maybe able to change here feed, this ensuring
 that her weight stabilises. Good luck. x

Sam_Scope

Hi @mary33 I found information saying that there are CP specific growth charts, have you seen one of these and plotted where your daughter is?  

I know it is hard to be an advocate but I wonder if you need to keep pushing for your daughter to be reevaluated? 

There are some useful organisations here.