Elizabeth's Diet Information!
After almost a year trying to figure
out what has worked for Elizabeth's diet I finally have come up
with a diet the is truly wonderful!!
She did really well on Tolerex when
she was first on it but she started losing weight after her
Jan.05 illness then again in Mar.05.
She got down to 14 pounds from 18
pounds. We struggled for several months. She would have
secretions or reactions from everything I tried. She cannot have
sweet potatoes, juices, rice milk, squash and the list goes on.
The stress from her not gaining weight was so hard.
I finally put her on breast-milk from
the Ohio breast bank with Tolerex and her baby food she can
handle. She is doing so well!!!!!
Now, this is what she gets and all
kids are different so remember that:
Tolerex, water, green beans, apples
bananas and pears, organic bananas, 1/4 tsp. safflower oil, her
vits and supplements and then after blended I add the breast
She has done very well on the breast
milk and seems to be getting stronger all the time.
The Ohio breast Bank website is:
The lady that is truly wonderful and
helped us so much is Georgia and her email address is:
I had emailed a doctor that has
studied SMA kids for years and this is the info I received.
"The question you ask is a simple
mathematical problem that, unfortunately, most physicians are
not taught to solve. The average 23-month old, non-SMA girl is
34 inches long and weighs 11.6 kg. For such an “average” child,
muscle constitutes 40% of body weight, whereas for the average
SMA-I child, muscle is at most only about 10% of body weight,
and often only 5%. Therefore, the ideal body weight of a
23-month-old with SMA-I should be 35% less than 11.3 kg, or
about 8 kg (17.5 pounds). However, because an SMA infant needs
some extra fat to provide “padding” that normally is provided by
muscle (which helps prevent pressure sores and other related
complications), we usually allow a somewhat greater weight than
this calculation gives. Thus, all other things being equal,
Elizabeth should weigh perhaps 18 or 18-1/2 pounds. Another way
of expressing this is to say that her weight should be about 3
or 4 standard deviations (Z-score) below her length. If
Elizabeth’s length is only 32 inches, her ideal weight might be
closer to 17 or 17.5 pounds.
Similarly, because about 40 to 50% of caloric expenditure is
from muscle metabolism, a child with SMA needs far fewer
calories, often only 60% of that recommended for age. For
nutrition recommendations, physicians are taught to go by the
book. However, unfortunately, there is no nutrition book
written for SMA, and dietary recommendations made using
standard scales are just not appropriate. For example, when a
child is very small for age (below the third percentile), as
some SMA children are, physicians are taught to use the
“weight-for-height” chart to specify an ideal weight for a
child's size rather than age. However, again, the weight-for
height charts were developed for children whose body composition
is normal or at least potentially normal when better nourished,
which never is the case for SMA. Thus, the published
weight-for-height charts are not valid for SMA and should never
Although what I have written here explains the basic principles
behind the special weight and nutrition goals for SMA, in
practice I usually look only at the length chart to make sure a
child's linear growth has been steady. If so, then the rest of
my recommendations are based on what a child looks and feels
like, not a number that I calculate. However, for physicians
who are not familiar with SMA and muscle disorders of similar
severity, the calculations I have presented usually help them
approach the problem correctly and avoid the almost universal
problem of overfeeding in SMA.