Ds and Nutritional Supplementation

Bridget was in the hospital for a month after she was born, and I was there with her most of that time. When I was at home, there was so much to do, and the other kids needed me. I did not have a chance to spend endless hours on the computer doing research. Either there were not as many Ds blogs then, or I was unable to find them. I probably would have spent as much time as I could reading personal experiences. I wanted information, and to feel hopeful.

I was looking for basic information about Down syndrome and what we might experience with Bridget. I found the incredibly comprehensive and helpful Riverbend Down Syndrome Support Group website, and printed out sections of interest to read at the hospital.

I was mostly concerned with things that applied to Bridget's first three months of life. I spent quite a bit of time researching the nutritional needs of premature babies and feeding issues in babies with Down syndrome. I really wanted to nurse Bridget and was determined to do everything I could to give us the best chance at successful breastfeeding.

Knowing that each child is unique, and that there were many things I could do little more than worry about at that point, I tried to not look too far into the future.

I came across information on Targeted Nutritional Intervention (TNI) and NuTriVene-D. I was skeptical at first, but came to the conclusion that nutritional supplementation was something I should at least consider. I did not feel the need to "fix" Bridget, or to change her...but I certainly didn't want to miss an opportunity to improve her health or to help her fulfill her own potential. Chris and I knew right away that we wanted to be open and creative in parenting and caring for Bridget, and in giving her a great start in life.

I printed out detailed information about TNI and gave it to our pediatrician to look over. She felt that Bridget may benefit and that it was not likely to do harm. She would have supported us if we'd decided to try it.

After careful consideration, we decided not to use TNI. There were three main reasons: (1) We wanted to get to know Bridget without medications or supplements. I felt strongly that waiting several months to start TNI would not be harmful. (2) Once she was able to leave the hospital, it was clear to us that Bridget was thriving. Her muscle tone was good, and she was alert and active. (3) After reading testimonials, talking to people who had used TNI, and fact-checking as much as possible, we still were not convinced of the benefit. (Additionally, Bridget had some minor GE reflux issues, and the literature explained that increased reflux was a potential side effect of the treatment.)

We are very content with our choice not to use nutritional and dietary supplementation with Bridget. She's been incredibly healthy so far. I'm always interested, though, in hearing about all the ways children with Down syndrome may be helped to meet their full potential.

Our pediatrician recently asked if I had seen the Changing Minds Foundation website. I had not. (One of her other patients with Ds wanted her professional opinion on the Changing Minds protocol.)

I am curious to hear what others have found and experienced. Please post here, or email me if you are using, or have used TNI or the Changing Minds Foundation protocol.