Down Syndrome Group of the Ozarks
DSGO, PO BOX 1598, Springfield MO 65801 | 417.885.9905 or 888.655.5173
DSGO, PO BOX 1598, Springfield MO 65801 | 417.885.9905 or 888.655.5173
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It came up at the March board meeting that there is some interest in Targeted Nutritional Intervention, Nutriven-D and Dr. Leichtman. My son Joseph, now 8, has used Nutrivene-D and has seen Dr. Leichtman. I have also heard him speak about the metabolic differences in individuals with DS. I can answer some of your questions or refer you to sources where you can get more information.
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Hi Jennifer. We are considering Nutrivene for our 3-yr old. Do you know if there are any digestive side effects of such large doses of vitamins? I remember hearing that it could be hard on the kidneys or other organs to flush it through. I’ve also heard that you can test to see if your child has any vitamin deficiencies before starting something like this (i’m assuming a blood test does that). Did you do a test like that or did the doctor recommend it? Thanks!
Comment by elena thaemlitz — March 7, 2008 @ 4:56 pm
Elena,
We did not have a blood test prior to starting Nutivene-D. Joseph began the vitamins at about 8 weeks old. Dr. Leichtman has an extensive blood test recommendation. He did have the tests at about one year of age and his results were normal. I had Joseph’s regular doctor check the ingredients prior to starting the vitamins and he confirmed that there was nothing in them that would harm Joseph. During the time he was on the protocol, Joseph was rarely ill and never had any ear infections.
Joseph did have an issue with part of the protocol, the enzymes (for digestion)were unnecessary and caused him some problems. Once Dr. Leichtman became aware of the effects, he had Joseph discontinue them. Joseph was on Nutrivene-D until about age 4 when he began to refuse it because of the strong taste and smell.
Comment by jennifer giordano — March 7, 2008 @ 7:24 pm
Jennifer,
Did you ever use Piracetam or know of any parents who have tried it? This is the supplement that increases the amount
of blood to the brain.
Comment by Lynn Neidigh — March 9, 2008 @ 8:04 pm
Lynn,
No we chose not to use Piracetam, although at the time, Dr. Leichtman recommended it for all his patients. To us, making sure Joseph got all his nutritional needs met was a no-brainer but we couldn’t quite make the leap to a pharmaceutical. A friend of mine did use Piracetam for her son off and on. She could not say whether it was making a difference or not, though his development was quite good. Likewise, there was no way to know if having Joseph on Nutrivene-D was making a difference since there is no way to know what he would have been doing or experiencing without it. I think that is the main problem with many interventions - no way to tell if it is impacting your child’s development or not, thanks to the unique ways DS manifests itself in each individual. Which interventions to employ is the jurisdiction of the parents and we just make the best decisions we can based on the information we can access with the best interest of our little one in mind.
Comment by jennifer giordano — March 10, 2008 @ 11:01 am
I wanted to add that there are some recent studies I have read about on the net that seem to indicate ginkgo biloba is beneficial to learning and memory in individuals with DS. I plan to look into this further. Also, DHA and omega 3 is great for brain development. Mama Jean’s on Campbell off of Sunshine has this supplement in kids formula that is pleasant tasting that my boys like and will take.
Comment by jennifer giordano — March 10, 2008 @ 6:32 pm