Tuesday, January 19, 2010

Nutrivene-D & What We Saw

The subject of Nutrivene-D and what it is still comes up fairly often. And that should be expected, since there are always new families coming to the message boards & email support lists asking questions.

But, I guess, in a way, I kind of forgot about it for a little bit. Nutrivene-D seems so elementary to where we are at now with Osiyyah. But, I have to remember, there are so many new families, or people who have never thought of or heard of TNI (Targeted Nutritional Intervention). And, so in light of that, I thought I would post what I wrote for our book - our experience & story with Nutrivene-D.

Now, let me say here, not everyone sees such drastic changes when starting their child on NTV-D. But, there are quite a few who have seen huge changes. Some give it to their child knowing that it should help in the long run. And, that is what really matters. This needs to be looked at as a marathon, not as a spring. The real benefits are what it does in the long run for children & adults with Down syndrome. Not, just the immediate results you may or may not see. Even if we hadn't seen results with Osiyyah, we would still use Nutrivene-D because of all the research that shows there are benefits (huge benefits) to using TNI.

---------------------------------------- Written in 2008:

Osiyyah and Targeted Nutritional Intervention

When Osiyyah was born, it was a surprise to us that he had Down syndrome. We knew absolutely nothing about Down syndrome.

Osiyyah was in the NICU for 2 weeks before coming home. Part of the concern of the doctors in the NICU was that he did not gain weight very well. At least some of this was due to his weak sucking when it came to breastfeeding. Because we knew absolutely nothing about DS, we had no specific questions nor where to find specific information. We relied on the hospital staff and doctors to give us information regarding Osiyyah during those first few months. Sadly, we needed far more information to get Osiyyah off to a good start in those early days.

Once he came home, we had to come back to the pediatrician’s office every two weeks for weight checks, because they were concerned about his poor weight gain. We kept daily weight records to know how much he was gaining a day. We would then total it up for the week, and for the month, etc. The doctors were very concerned for him because they did not know why he was gaining weight so slowly.

We asked the doctors many times why he was not gaining weight. They never had an answer for us. We asked if it was his thyroid. They said it was not. We asked if it was a deficiency of something. They said it was not. We researched as much as we could. I emailed and called various doctors who were specialists in Down syndrome, including Dr. Don C. VanDyke, and asked them various questions. They all said, if his thyroid and everything else is fine, then do not worry about his weight.

Besides his inability to gain weight well, Osiyyah was also not thriving in many areas other than his weight gain. His lack of weight gain and poor growth pattern were two very obvious examples of his failure to thrive. His muscle tone was very weak and his gross and fine motor skills were not that great. He also had terrible reflux and spit up all the time. We would go to the grocery store and people would ask, “What’s wrong with him?” Our doctors, at the time, gave us no answer as to why he was not thriving.

Finally, after several months of going to the doctors every two weeks, they were happy with his progress and we did not have to return every two weeks. We then searched for another doctor and found Dr. Kolchins in Encino, CA. Dr. Kolchins had seen a good handful of patients with Down syndrome through his career. With his experience, we were relieved to have him see Osiyyah because he actually would do something more than the other doctors my brother had seen his first 8 months. Dr. Kolchins ordered several blood tests, something which had not been done since he was a few months old.

I remember very vividly that day Dr. Kolchins called to tell us the results of Osiyyah’s blood tests. I was in the barn and my mom came in and said, “Dr. Kolchins called.” I was a bit scared, because I did not know what to think. I remembered reading various posts by parents on message boards about getting a call when their child’s blood work came back bad for Leukemia. My mom said, “Osiyyah’s thyroid is ‘borderline-hypo.’” We were relieved to find out that it was “only” that and not something more serious. Dr. Kolchins wanted to start Osiyyah on thyroid medication, but we asked him for a little time so we could do some research. Osiyyah was only 8 months old and we were going to start him on medication already? That was not something we wanted to do, if we had the choice.

I immediately began to research what we could do for Osiyyah. Were there any nutritional ways to help his thyroid? What would cause this? Within just a day or two, I found out about Targeted Nutritional Intervention, namely NuTriVene-D®. We researched it out as much as we could. I posted on various message boards and found that many people were adamantly opposed to it. I couldn’t understand why they would be so opposed to just some nutritional support! We finally decided we had nothing to lose and ordered a bottle of Nutrivene-D Daily Supplement Powder. This was one of the best choices we ever made for Osiyyah.

Once the Nutrivene-D arrived, we started giving it to Osiyyah. We slowly increased the dosage up to the recommended dosage. Within just days of starting Osiyyah on Nutrivene-D, he started improving. Within a couple weeks he was gaining weight and keeping the weight on. His cheeks started getting round and plump. His spitting up reduced greatly and over the next couple of months the reflux stopped. His muscle tone improved dramatically and within just 1 month, at the age of 9 months, he was able to sit without any support. He was nowhere near being able to sit before we started him on Nutrivene-D. He became much more aware of his surroundings and became much more interactive with his family. His gross and fine motor skills improved dramatically. He was pulling himself up to stand and standing at 13 months old and walked at 17 months old. He was no longer this skinny, “failure-to-thrive” little baby. He actually looked healthy and was aware of what was going on around him.

The change that Nutrivene-D did in Osiyyah was amazing. Just by supplying his body with a good nutritional supplement, he was able to thrive beyond what we believed he could or had hoped.

We took Osiyyah back to Dr. Kolchins just a few weeks after starting Nutrivene-D and gave Dr. Kolchins a “Physician’s Packet” from International Nutrition Inc. about TNI. We have not given Osiyyah thyroid medication to this day. We monitor him for hypothyroidism symptoms and have regular thyroid lab work done, adjusting his diet and nutritional supplements accordingly.

We ended up finding out that Osiyyah’s thyroid was high from the time he was born. We were never told about it until Dr. Kolchins told us when Osiyyah was 8 months old. If we would have found out about his thyroid problem sooner, we would have been able to find out about Nutrivene-D sooner. I greatly wish we could go back in time and re-do those first 8 months, but I am very thankful that we learned about TNI when we did – Osiyyah was still very young, only 8 months old. Although TNI is not for thyroid problems, by giving him TNI it was able to “stabilize” and help “normalize” his metabolic pathways in his body. His body was therefore able to function better.

Through the process of finding out about TNI, we learned about Dr. Lawrence Leichtman. Dr. Leichtman has traveling clinics around the states and is also president of the Trisomy 21 Research Foundation, Inc. and he is now Osiyyah’s doctor. I remember the very first visit Osiyyah had with him. Dr. Leichtman told us things we did not know and we were actually able to learn and benefit from the visit with him, instead of us questioning the doctors all the time and coming away with no answers. We are very thankful for Dr. Leichtman’s dedication, research, and support of the Down syndrome community, especially when it comes to TNI.

Osiyyah is now 3 years old and thriving far beyond the dark prognosis the “professionals” gave him early in his life. If we had not started him on Nutrivene-D, I am convinced that he would not be where he is right now and the prognosis those “professionals” gave when he was born may have been right.
----------------------------------------------------------

Qadoshyah

10 comments:

Jasmine said...

Hi, I'm new to your blog. I was googling NTV-D and found you. My doctor just recommended this supplement for my little girl. Your report is wonderful.

I'm going back and forth between this supplement and MSB Plus V7 by NutriChem. Any other information you may have would be greatly appreciated.

The thing I like about NutriChem is that they will formulate the supplement to suit her needs according to metabolic testing.

What are your thoughts?

Thank you,

Windmills and Tulips

Qadoshyah said...

Thanks Jasmine for the question :). I've been asked that question lots of times over the years. I responded in length on my blog, which you can see directly at:

http://gotdownsyndrome.blogspot.com/2010/03/msb-plus-nutrivene-which-one.html

yoder178 said...

My son Brody was on TNI for several years but developed a problem with increased sensitivity to touch. We tried a few more formulas but it did nothing. I would like to return him to the program since his weight and appetite responded to it. One caution I have with people is that while this is great stuff, your child's actual diagnosis may come into play. My son has translocation trisomy 21 which means he does not have dual gene sets all along the chromosome. I am convinced this is part of his problem with the formula. Those with mosaic trisomy may also have a different reaction to the program. I find it interesting that the company does not mention this,(nor does Dixie tofoya). I also find it interesting that I cannot find any more info on Dixie or her children. Her website seems to end at 2006 with little info on it.

Qadoshyah said...

Thanks for the comment yoder178.

Yes, every child is going to be different and each child may have different needs. That's why Nutrivene-D has custom formulas for children who can't take the regular formula. Dixie Tafoya can be found on facebook and she also posts off and on at the yahoo! group DSTNI. I have her email address if anyone wanted to contact her. Or, you can just search for her on facebook.

yoder178 said...

Replying to post about Dixie Tafoya having a page on facebook. Cannot find it.

Qadoshyah said...

Dixie's FB page is: https://www.facebook.com/profile.php?id=543127774&sk=wall....Hope this link works.

dana said...

Hello, I just found you and I never spent so much time on any blog since tonight.
I started giving Nutrivene to my daughter without any medical advice, based only on personal research and trusting it on an intuition base (my thoughts were the same tou had when starting it). No doctor advised me and I should like to know if this is a continuous treatment - no pause is to be provided?
Thank you for your great blog and for your answer.
Dana

dana said...

hello, I am new here. I just found your blog today and I have never stayed so long to read something, as I did tonight.
I am interested in the Nutrivene cure - I used it without any medical advice (which was a real worry, I confess) and I should like to get some more information and I do not know if this is to be a continuous cure or some pause is to be provided.
Thank you for this blog and for an eventual answer
Dana

Qadoshyah said...

Hi Dana,

I'm so glad you found our blog! I'm glad it's been helpful and I hope it continues to help you and your family.

Nutrivene is something which is to be continuously given, as it helps for years down the road. You would probably find this post helpful, http://gotdownsyndrome.blogspot.com/2010/10/31-for-21-its-marathon.html.

We also put together a book with lots of info from doctors who use Nutrivene (and there's all sorts of other info in it). You can get it from http://stores.lulu.com/gotdownsyndrome. I'm sure you would find it super helpful as well!

Qadoshyah
P.S. Feel free to email anytime!

Anonymous said...

I was SO excited to find your blog! Our son is 2 yrs. old and has Down syndrome. I just heard about Nutrivene-D at a DSG conference in our area a few weeks ago and started asking his therapists and doctors about it. Funny, his therapists have heard about it but his doctors have not.

Like your son, our son has horrible reflux, very low muscle tone, and was failing to thrive (has a G-tube now). While we have started him on a very low dose of thyroid medicine I am anxious to see the results of using Nutrivene-D with the hope we can eliminate the thyroid medicine completely. I'm also anxious to see if it helps with his muscle tone as well since he is not crawling or walking yet. AND, his lack of growth (height and weight) is still a BIG concern of mine and his nutritionist.

While I don't expect miracles I am hopeful for some positive results. Thank you so much for sharing your story!

Tricia

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