FAQs

Trisomy 21 Research Foundation : Down Syndrome : Trisomy 21 : Autism

What is Down syndrome?

Trisomy 21, or Down syndrome, is the most common chromosomal abnormality. Unlike other congenital conditions that have a deletion or mutation, individuals with Down syndrome have an extra chromosome 21. This extra chromosome causes “overexpression” of genes that change metabolism and function of antioxidants, amino acids, digestive enzymes, and other essential nutrients. Consequently, growth and developmental patterns may be negatively impacted in children with Down syndrome. Specific disturbances in metabolic pathways attributable to gene overexpression in Down syndrome include: Superoxide dismutase (SOD): With the increased production of SOD, other enzymes are unable to keep up with the detoxificaton of the free radical, hydrogen peroxide. The excess hydrogen peroxide accumulates in the cells and tissues causing oxidative stress and apoptosis (programmed cell death). SAM Cycle: The overexpression of the enzyme cystathionine beta synthase (CBS) disrupts homocysteine metabolism so that methionine (folate dependent) is not resynthesized. Methionine is required for the production of S-adenosylmethionine (SAM), a methyl donor that contributes to the synthesis of neurotransmitters (chemical messengers that nerve cells use to communicate with each other in the brain affecting mood, behavior, hunger, sleep, etc.) and cell membrane components. Connective Tissue Issues: The gene associated with collagen expression is located on the 21st chromosome and may be responsible for the presence of hypotonia (poor muscle tone) issues common in Down syndrome.

What is Nutrivene-D?

Nutrivene-D is a nutritional supplementation program formulated to support Down syndrome. The program includes a Daily Supplement, Daily Enzyme, and NightTime Formula. Nutrivene-D Daily Supplement consists of vitamins, minerals, amino acids, and other essential nutrients that your child may need throughout the day. Children with Down syndrome may be deficient in digestive enzymes and experience malabsorption problems. Supplementing with digestive enzymes may help your child better absorb nutrients from his or her daily intake of foods and dietary supplements. Premature aging, lower growth rates, and sleep disturbances are also common in Down syndrome. The NightTime Formula provides nutrients needed for normal physiological function between the evening and morning meals.*

What age should my infant begin taking Nutrivene?

We have many infants taking the product who are just days old. When providing Nutrivene to an infant, we recommend starting at a significantly reduced dosage and working up to a full dosage over a 1- to 2- week period. Nutrivene should be added directly to infant formula or breastmilk.  Speak directly with your physician or other healthcare practitioner prior to beginning Nutrivene or any other dietary supplements.

How do I give my child Nutrivene?

Nutrivene is available in capsule and powdered forms that mix with foods and drinks.

Does Nutrivene have any side effects?

Some children experience loose stools with the Daily Enzyme product. Should this happen, we would recommend that your child’s dosage be reduced by one-half. Additionally, some children do not like the taste of Daily Supplement. We have several forms of the Daily Supplement including a Microencapsulated Powder form that has a reduced vitamin taste and mixes well with many foods. We also have a list of taste-enhancing suggestions so usually any issues with taste can be minimized.

Do I need a prescription for Nutrivene?

Nutrivene is a dietary supplement that does not require a prescription.

Is Nutrivene FDA-approved?

Nutrivene is not a drug and does not require FDA (Food & Drug Administration) approval. However, as a dietary supplement, Nutrivene does fall under the auspices of the FDA. Nutrivene products are manufactured in a licensed U.S. pharmaceutical facility.

My child has a history of illnesses including; ear infections, upper respiratory infections, and sinusitis. Will Nutrivene make my child healthier?

Many parents tell us that their children are healthier after beginning Nutrivene. Dr. Lawrence Leichtman, a clinical geneticist, pediatrician, and President of Trisomy 21 Research Foundation, has observed improved growth, immune function, and developmental parameters (speech, gross motor, fine motor, cognitive) in his patients with Down syndrome that have used Nutrivene. Additionally, Dr. M.J. Gelb, a pediatrician from Germany has observed a reduction of infections, increased growth, and a normalization of blood parameters like Selenium, Vitamin A, and Vitamin E.

You recommend providing Nutrivene 3 times per day. Is this necessary?

If providing Nutrivene 3 times per day is not convenient, provide it 2 times per day (divide the total daily dosage in half).

Is Nutrivene a cure for Down syndrome?

Nutrivene is not a cure for Down syndrome. Parents, physicians and therapists (OTs, PTs, etc.) have noted that their children, patients, and clients, respectively, that use Nutrivene seem to be more alert, healthier, and more focused.

Does insurance or Medicaid cover Nutrivene?

Parents have informed us that some insurance companies are covering Nutrivene. Typically this requires a letter of medical necessity from the doctor and a written prescription. We do not bill insurance companies. You would need to submit your International Nutrition invoice along with a claim form to your insurance company. Some states are covering Nutrivene through Medicaid waivers. You should speak with your program services coordinator or caseworker to find out if and/or how you can obtain coverage. Many Health Savings Accounts (HSA) and Flexible Spending Accounts (FSA) allow individuals to pay for needed dietary supplements with pre-tax dollars.