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To Have A Diet
"Expert" contact you with regards to the Amino Acid Diet
for your child, Please Send Laura an
Email with the
following information: 1). Your Name, 2). Contact
Information, 3) Age of Child, 4) Type of SMA, 5) Current
Weight and Height of child, 6) Whether they eat orally
or not, 7) Do they have a g-tube or not, and 8) What
does their current diet consists of in general.
The appropriate helper for your specific child's needs
will contact you and provide more information on how the
Amino Acid Diet can be applied in your specific
situation.
WHAT IS
THE AMINO ACID DIET?
Mary Bodzo
smbodzo@msn.com
u (352) 245-9119
This information is based on opinions and experiences
compiled from parents of children with SMA.
ABOUT THE DIET
The Amino Acid Diet (AAD) is a nutritional approach that
many SMA families believe has had a positive impact on
their child's wellness and stability. Using this dietary
approach, milk, soy, and most other food proteins are
eliminated and substituted with an elemental free form
amino acid formula. Elemental formulas are made from
nutrients in their most broken down form. This form
requires very little digestion. Tolerex and Pediatric
Vivonex, manufactured by Novartis Nutrition, are the two
formulas that are used most often. Both formulas contain
vitamins, minerals, carbohydrates, protein and a small
amount of fat. The protein is in the form of free amino
acids. A free amino acid is not derived from a food
source and is in its simplest and purest form. Parents
that use this diet believe more benefit is seen with
free form amino acids, rather than hydrolyzed amino
acids, which are broken down proteins from foods, such
as dairy or soy. The free form amino acids in Pediatric
Vivonex and Tolerex are in balanced amounts, and will
not trigger immune responses such as inflammation. They
are easily digested and quickly absorbed into the
bloodstream.
Many parents believe their children with SMA are
extraordinarily reactive to the proteins in dairy and
soy products. Their symptoms are commonly attributed to
their SMA progression, yet when these proteins are
eliminated and substituted with free form amino acids,
most children, with all types of SMA, have experienced
improved respiratory health and fewer complications from
illness. Most children with Type 1 SMA have an immediate
reduction in airway secretions. In addition,
constipation, which can be a major complication, is more
manageable or even eliminated. Some children have
improved strength and regained function.
Parents using these formulas may vary their child’s
particular diet based on age, weight and severity of
SMA, but there are some basics that most children
respond to favorably.
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Although these formulas can be used to provide complete nutrition,
many SMA families use approximately 1/3-1/2 of this
amount in order to avoid amino acid overload. Children
with SMA do not tolerate large amounts of amino acids
due to their reduced muscle mass. This reduction of
muscle mass prohibits the proper absorption and storage
of amino acids resulting in possible toxic levels in the
bloodstream.
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More than 2 packets of either formula, over a 24 hour period, can
cause an increase in heart rate, other cardiac problems
and/or gastrointestinal distress.
-
To avoid protein and calorie overload, these formulas should not be
given to a child still on soy or milk based formulas.
The idea is to replace those food proteins with the free
form amino acid protein found in the Tolerex or
Pediatric Vivonex.
ADDITIONAL SUPPLEMENTS
Because these formulas do not provide complete
nutrition, additional vitamins and minerals must be
added to the child’s diet to ensure that the RDA’s are
met. Special attention should be given to calcium,
magnesium, and potassium intake. Other commonly
well-tolerated added supplements (by most children):
vitamins and minerals, acidophilus (dairy free),
L-glutamine powder (dosage is 200-300mg/kg/day), (the
formulas contain 1060mg’s in one pack of Tolerex and
774mg’s in one pack of Pediatric Vivonex), L-Carnitine,
and Coenzyme Q10. Sometimes, small amounts of additional
essential amino acids, in free form, are used by older
children.
Although children with SMA do not require as many
calories as active children without SMA, the amount of
formula used is inadequate to meet their caloric need.
If using Tolerex, parents sometimes add very small
amounts of extra fat to ensure that adequate essential
fats are given. A commonly used fat supplement is 1/4 to
1 teaspoon of safflower oil added to the daily formula
mixture. Some children do well with 1-2 grams of evening
primrose oil per day. Any fat supplements should be
added gradually over a period of days, as some of the
most affected children may experience slow stomach
emptying and gastric distress. The Pediatric Vivonex
contains ample fat for most children.
INSTRUCTIONS ON ADMINISTERING DIET
The Formula:
These formulas should be diluted as much as possible
(more than the directions call for) with water, juices
or enriched rice milk. The benefits of using juices or
rice milk include not just the improved palatability,
but the additional calories, potassium, and other
nutrients they provide. A well-tolerated dilution is
approximately 12-20 ounces of liquid for each packet of
formula, depending on whether the child is G-tube fed or
drinking the formula. To ensure adequate hydration,
extra fluids should be given.
Children that are exclusively G-tube fed should have the
formula administered by a continuous drip or given in
small boluses. Some children without G-tubes drink the
formula throughout the day. It should be diluted as much
as possible, and divided into at least 3-4 servings.
Additional Food:
In addition to their Tolerex or Pediatric Vivonex, SMA
children should consume fruits, vegetables, and those
with types 2 or 3 SMA usually tolerate grains. Parents
should use vitamins, minerals, additional supplements
(discussed earlier), juices, and baby foods (fruit and
vegetable) to meet their child’s nutritional
requirements. The formula, fluids, and any added
supplements and baby foods should be mixed in a blender
and refrigerated. . Since children with Type 1 SMA are
often the most reactive to changes in their diet, foods
and supplements should be added one at a time to check
for tolerance.
Children receive the most benefit from the diet by
greatly reducing or avoiding animal protein
foods. This includes dairy products, eggs, and meat. A
vegetarian diet is highly-recommended to see the most
benefit. Remember, the children are receiving adequate
protein from the amino acids in their elemental formula,
and can easily be overloaded if they are also eating
high-protein foods. For some children, this can
interfere with improvements they may gain from this
diet.
CLOSING
Personally, I have had success with this diet for my
daughter Krista, a happy, vibrant 15-year old who has
SMA Type 2. Through research, trial-and-error, we placed
Krista on this diet over 10 years ago and have been very
pleased with her wellness and stability.
Although children are affected by their SMA differently,
the recommendations stated earlier seem to be the safest
and most effective way to implement this diet. Parents
must take responsibility for monitoring and problem
solving when placing their child on this diet.
Unfortunately, due to the lack of study this diet has
received, most medical professionals are unfamiliar with
this dietary approach and often overload our children
with these formulas.
I encourage all parents to research and read the many
informative nutrition books available at bookstores and
libraries. In addition, networking with other SMA
families that have successfully used this diet can also
be an invaluable source for information on the benefits
and administration of this regimen.
ADDITIONAL INFORMATION
Pediatric Vivonex and Tolerex are formulas manufactured
by Novartis Nutrition. Ph# 1-800-333-3785. With a
prescription, they are often paid for by insurance or
Medicaid. Information on their home delivery program can
be found at
www.resource.walgreens.com. If you can not get
it paid for via insurance, contact
Laura at SMA
Support for further information on how we can help you
get what you need.
**If you
have Microsoft PowerPoint, you can also open the below
Presentation about the Amino Acid Diet with more
specific details. Open the new window to a full
screen. If it doesn't run automatically for you,
simply left-mouse-click to advance from screen to
screen. Open
HERE! |
