Re: Determining proper weight/ Lori

April 11, 2008

Lori,

We also have the same general opinion of nutritionists, they generally know

NOTHING about SMA! We have found one nutritionist that is at UW with Dr. Schroth

that seems pretty up to date on nutrition with SMA. I will cut/ paste some info

from her. I e-mailed her and asked her opinion on weight- mainly out of

curiosity now. And this is for kids, don't know if it is the same for adults. I

will post when I hear back from her though. If you are interested in e-mailing

her, I can ask her to make sure it is okay to pass on her information.

Usually, the recommendations for vitamins and minerals for the general

population are acceptable for kids with SMA. That would be an appropriate part

of the charts to follow. However, kids with SMA do not have the same calorie,

protein, carbohydrate, and fat requirements. They need about 60-75% of the

calories that are recommended. They typically get 70-80% of calories from Carb,

15-20% of calories from fat, and 5-10% of calories from protein. For the general

population, the RDA rec'ds 50-60% of calories from Carb, 25-30% from fat, and

20% from protein.

Kristal

Mom to Brett- SMA II (8 years old!!!)

Determining proper weight

I was wondering if anyone knew of a method to determine the proper

weight for an individual. I know of the charts for the average person

based on height and frame size. But what about considering very low

muscle mass as many of us have and will lose more muscle as SMA

progresses? differences of bone development and size of ppl with SMA

and have never walked vs. the average person. Muscle weighs more than fat.

I met with a nutritionist and she wanted me to increase my weight. I

am struggling very much with this cuz more weight to me means more fat

that I have to move around when I can move my arms now with much

difficulty and get so tired and more fat/weight for my attendants to

deal with in caring for me.

There was no physical exams or anything. Just a calculator and her

professional opinion who had not heard of SMA.

TIA,

Lori

36 w/ SMAII

Recommended Posts