"Panic" To Stop the Down Syndrome?

When a family finds out their child has Down syndrome, they want to be able to find out what they can do for their child. Some of those families look into supplements and drugs to help their baby, which I think is great.

But, there are some who feel that families who start their baby on supplements so quickly (at a young age - just weeks to months old), are in a "panic" about the Down Syndrome and feel the need to "do something" to stop it.

For some families this might be the case, but more often then not, the families I have talked to are not in a panic about what they can do. They simply want to do what is best for their baby and give their baby what they feel is the best chance to do well. For some families, this means starting their baby on a variety of supplements and possibly drugs as early as possible.

We did not find out about any sort of supplemental/nutritional intervention for O until he was 8 months old. Had we found out about it when he was younger, we could've looked like we were in a "panic," because we would have started Nutrivene-D when he was just days old.

But, it's not because we want to stop the Down syndrome. It's because we want to do what we feel is best for O. And I believe that's where most families are coming from.

The earlier you can start supplementation to combat the negative effects of the extra chromosome, the better. The more time that goes on without intervention to combat the harmful aspects of Trisomy 21, the more damage that is done. You cannot fully stop the oxidative stress, mental retardation, or neurological concerns with just supplementation, but you can slow them down a lot.

I fully support and encourage parents who want to start supplementation as early as they feel is safe. For some parents that may be from day 1 and for others, that may be at a year old. For some, it may be a long list of supplements, and for others it may be a more conservative list, which slowly gets longer as the child gets older.

The biggest concern here is to make sure you, as parents or caregivers, are fully researched and convinced, in your own mind, regarding any supplement or drug you give your child.

There are things to be cautious of, especially for a young baby. You don't want to overload their system, particularly their gut, especially if they have GI concerns. But that's where researching what you are going to supplement with comes in. If you are well researched, have talked to others who are knowledgeable, you are on the right track.

I would not want to discourage someone by saying they are in a "panic" about the Down syndrome. In a sense, there is a race against time which is very real and this is why I think it's very important for supplementation to be started at an early age.



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Afraid of Change?

Anyone who is involved in Down syndrome and targeted nutritional intervention will likely know that it's a very "hot topic" on many online message boards. Just asking the question, "What does everyone think about TNI or Nutrivene?" will open up a huge can of worms.

I found this out the hard way when we first discovered Nutrivene. Little did I know that it would be such a debated topic when I asked everyone's opinions on this matter. Although, it is much calmer than it was a few years ago on many online message forums, it's still a very passionate topic. And if you're on the "wrong" (I use that term loosely) message board it can bring quite a heated discussion.

For years I have been puzzled as to why this is such a huge debate. I understand people discussing this, weighing out the pros and cons, sharing experiences, etc. But, there are certain statements that are made frequently, which have always left me in confusion. These statements are made when the topic regarding the use of any supplement or TNI comes up on most (not all!) online message boards and email forums.

The statements are always along the lines of:

-I accept my child for who they are and I don't want to do anything to change that

-I don't want to change my child

-I don't want to take away the 'Down Syndrome' from my child 

These statements puzzle me.

From the beginning of us looking into the use of TNI for O, it was never because we wanted to change him or remove the Down Syndrome.  He had some serious health concerns and we needed something to help him be a strong, healthy boy.

When people say these things, I wonder why they would say something like this, unless they just do not fully understand what the use of TNI is for. And, it's obvious, from statements like these, that they don't understand. Because, if they did understand, they wouldn't say those things.

It almost seems as if they are afraid that using something like TNI, that it will change their child for who they are. It makes me wonder about the use of other early interventions.

If someone is so concerned about changing their child, why do people do Early Intervention - Physical Therapy, Occupational Therapy, Speech Therapy, Feeding Therapy, etc? It's the same thing that TNI does. It could be called Nutritional Therapy. Because, that's what it is. It's helping their body and it's nutritional needs. Just as Physical therapy is helping their body in it's physical needs. Or, Occupational Theapy is helping their body in it's fine motor needs. Or, Speech Therapy is helping their body in it's speech production needs. Or, Feeding Therapy is helping their body in it's eating needs.

We fully accept O for who he is with his extra chromosome. We are not trying to remove the 'Down Syndrome' or the extra chromosome from him.

What we are doing, is helping O's body deal with the biochemical changes that the extra chromosome causes. This is not speculation. It's a fact that there are 250+ additional genes in the body of a person with Down syndrome. Some of these genes and proteins are overexpressed in DS and they cause all sorts of harm to the biochemical, medical and nutritional needs of a someone with DS.

I don't want O to develop early Alzheimer's. I don't want O to develop dementia in his 20's. I don't want O to get leukemia. I don't want O to have thyroid problems. I don't want O to have nutritional deficiencies. And the list goes on.

This change is what we are going for. Change that will help O be a strong, healthy, cognitively aware person with Down syndrome. And by God's grace, he has shown us TNI that has the potential to do just that. God has used that to help him and I trust He will continue to use it to help O.

That is the change we're looking for. But, it doesn't remove the fact that O was born with Down syndrome and that, we are not trying to change. If there was a way to fully remove the harmful effects of the extra chromosome, I would do it. But, at this point, that is not a reality. What is a reality, is to use TNI and various other nutritional supplements to help counteract some of the effects of the 21st chromosome.




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Do Insurances Cover Supplements?

The expense of the many supplements and drugs which people have their child with Down syndrome on, comes up often. Yes, it's not cheap to take Longvida or Nutrivene, or the many other supplements someone may have their child take.

But, it's very worth it!

It's not common for insurances to not be willing to cover Nutrivene or any other supplement. Nutrivene seems to come up the most often with the question "can this be covered by insurance?"

There have been some families who have been able to get their insurance to cover it. I'm not sure how they were able to, but there are a few options that you could try:

-Have your doctor write a prescription for Nutrivene. A prescription is not necessary for your child to take Nutrivene, but this may be one way your doctor could get it covered.

-You could try submitting it to an insurance as a "therapy." Because, it is technically "nutritional therapy."

-In some cases, you may be able to submit it to medicare or your child's insurance as another sort of therapy, depending on how it has helped your child.

We have not tried to get it covered by insurance, since it seems like it would be a battle to try to have that done. We've been buying Nutrivene-D for almost 7 years now and God continues to provide!

If anyone has anymore information on how to get insurance or medicare to cover your child's nutritional supplementation, I'd be interested to hear it!



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To Wait For Research or Not?

One very common thread that comes up frequently when any supplement is talked about for Down Syndrome is whether it has been researched specifically in people with DS. A placebo controlled clinical trial is almost always brought up.

I agree that it would be very nice if there was a clinical trial specifically for Nutrivene-D and people with Down Syndrome, Longvida Curcumin and people with Down Syndrome, etc. But, there is not.

There is a ton of research that supports the use of the nutrients in Nutrivene-D for people with DS. Personally, that's enough research for me. To see that such and such supplement helps make people with DS not deficient in it, I am going to give it.

That's why Nutrivene-D is here. Nutrivene-D follows the newest research for DS and also the feedback from families who use it and the formula is changed accordingly. New ingredients are added, the dosage of ingredients are changed, some ingredients are even taken out at times.  Giving Nutrivene-D (NTV) saves a lot of time, and even money. Otherwise, someone may be giving a whole cupboard full of each individual component which is already in NTV. Some may have to do that, if their child is sensitive to various supplements, but NTV regular formula and custom formulas work for most people.

There is a massive amount of research on the use of Curcumin in patients with Alzheimer's Disease (AD) and all sorts of other health concerns. All you have to do with this, is the same as NTV. Put two-and-two together. When you do that, you realize that if this particular problem is present in DS, and also present in AD, and supplementation helps this problem in AD, it should also help the problem in DS. So, why not give it?

And so, since there is not a placebo controlled clinical trial on NTV or Longvida Curcumin for DS, does it mean we should not supplement with it? The same problems present in DS are present in other research studies done with Curcumin and other supplements in people with DS, AD, and the general population. The research studies show it is helpful, so how is it going to hurt the person with DS because there is not a specific study done on this population?

The research is overwhelming that has been done on Down Syndrome and supplementation with various supplements. And also on Longvida Curcumin and patients with AD.

The reports from thousands of families sharing the benefits of using targeted nutritional intervention (TNI) with their child with DS is massive. There is even a plethora of feedback from families using Longvida Curcumin with their child.

So, what are we to do? Sit back and wait until there is a clinical trial done specifically in Down syndrome?

For us, the answer is obvious. No, we will not sit back and wait. I view it as a very important issue and one that doesn't have time to wait. We're talking about waiting to see if we should give something to my brother that has the potential to greatly help his health and his brain! It's my brother's life we're dealing with. His life and well being would be put on the line if we are to wait for research.

I praise God that we did not wait for research on NTV. God greatly used NTV to help my brother. I seriously wonder how he would be if we did not start him on NTV. At the course he was going, he would not be thriving well in his health at all. But, today, he is a different child. He is a healthy, active, smart, happy little boy.

To this day, 6 years since we started NTV, there is still no clinical trial done on it. And I see that as a very likely situation with Longvida Curcumin. Doctors involved in TNI have tried to get clinical trials done and it doesn't happen, because most people are not interesting in making this happen, sadly.



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How To Choose What To Give?

I know it can get overwhelming at times as to what supplements to give, how to afford them, etc. Every family has their own set of supplements they give and the reasons why they give them. Yes, some are the same across the board, but you will typically find a variety of additional supplements that each family uses.

When the discussion of different supplements arises on various message boards, one can feel overwhelmed at times as to what to give.

Should I be giving that too? Oh and that supplement? What about this supplement that I just heard so-and-so recommend?

If you gave every supplement every person suggested, the list would be incredibly long and really expensive.

This is the way we do it:

I research things and I look at all the pros and cons of every supplement. Then, I look at what I feel, from research and our current situation, is the most important for O and he takes those supplements.

Longvida Curcumin is a large expense every month, but that one is an "unquestionable" supplement. One that, because of research and what it does for O, we won't do with out.

The "base" supplements he takes are:

Nutrivene-D Daily Supplement & Nighttime Formula
Longvida Curcumin
Ginkgo Biloba
Zinc
Vitamin D
TMG
Blueberry
Methylcobalamin B12
DHA

There are more supplements that O would be taking, if we were able to do it. At some points we do add more on and then that's just factored into what he needs to take. The supplements I would add on, if possible are:

Coenzyme Q10
EGCG
Seabuckthorn (possibly)

But, because I feel O is getting what he needs with the current supplements he takes, I'm not going to stress over not being able to get every good supplement into him.

There are some things he is simply not able to handle, even though they look like they should be good for him, according to research. Like Probiotics, Piracetam, Nutrivene's Daily Enzyme, or Folinic Acid, to name a few.

If your child can't handle a certain supplement, then maybe he will never be able to handle it, so therefore it's not beneficial for him or her. Or, maybe the child is too young and he will be able to have it again as he gets older. Or, maybe he needs a lower dose. It takes a lot of figuring out to see what works best for your child.

There are also some supplements which many families give, even to young babies, that we simply will not use with O. Or, certain dosages of supplements. Because through research that I've done, I don't feel it is safe to give him.

One of those supplements that we would not give, and many people use, is Prozac. There is no way that we are comfortable giving Prozac to O. I'm quite sure there are other supplements as well, but I can't think of any off the top of my head.

There is a certain Ginkgo Biloba dosage that is recommended by the Changing Minds Foundation which I feel is extremely too high of a dosage. So, we give the recommended dosage from Trisomy 21 Research Foundation & Nutrivene.

If there's something I'm not sure of, I'd rather be safe than sorry. It's my brother's health and well being we are trying to help, not damage, in giving him supplements.



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31 for 21: Dr. Henry Turkel's book, Post 1: Overview

For the last year, I've wanted to write some posts up going over Dr. Henry Turkel's book, Medical Treatment of Down Syndrome and Genetic Diseases, copyright 1985. From what I know, the book is out of print. I was able to find it used online somewhere several years ago.

It was a great buy and is an extremely interesting book. It's packed full of information and very fascinating to see what he had to work with and through in those early years. It will take several posts to go over the details in this book, so I will do that over a few weeks, Lord willing. I have 5 posts "written" on a few pieces of paper right now (and there will likely be a few more than that), so I have to put them all up here on the blog.

For those who don't know who Dr. Turkel is, here's just a snippet of background info:

Dr. Henry Turkel was a doctor in the 1950's and earlier who treated patients with Down syndrome and other genetic conditions with nutritional supplements, diet and medications.

On Page 1 of the book, Dr. Linus Pauling writes,

There is an increasingly great and increasingly convincing body of evidence that the use of vitamins, minerals, and other orthomolecular substances in the proper amounts, the amounts leading to optimum health and to the best treatment of disease, has great value in the control of infectious diseases, cancer, heart disease and genetic diseases. there seems, however, to be a bias against these substances on the part of the medical profession and of nutritionists. The result is that there is opposition to orthomolecular medicine.

The work of Dr. Henry Turkel provides a striking example of the way in which this opposition operates to the detriment of the health and well being of a large number of people. Dr. Turkel has developed, over a period of decades, a treatment of mentally retarded children with the use of vitamins, minerals, cerebral stimulants, and other substances. He has gathered together a convincing body of clinical observations showing that the genetic condition of mental retardation need not be accepted as inevitably leading to permanent defect and inability of the individual to function in normal society. Dr. Turkel has indeed provided new hope for the mentally retarded and for members of their families, hope that a great improvement in functioning can be achieved.

This is a good overview of what Dr. Turkel's book goes over. It covers everything from the beginning of his development of the U Series, specific cases of Dr. Turkel's patients, his attempt to get his U Series FDA approved, and the success of patients on the U Series with DS both in the US and abroad.

Dr. Turkel earned his medical degree in 1936 and went into private practice. He also perfected biopsy instruments before the second world war. The instruments called the Turkel Trephine Instruments as well as the Turkel Needle. All of which were used routinely in World War II. He was also appointed consultant for the Surgeon General  in 1952.

A boy named Peter was who started Turkel's research into Down Syndrome. Peter's father inquired about possible treatment for his son. Dr. Turkel knew nothing about Down Syndrome, but he had studied how nutrition can help other genetic conditions.

When Dr. Turkel first started working with Peter and his other early patients with DS, it was not known what caused DS. As he states in his book on page 5,

When I first treated Peter, maternal exhaustion, low thyroid, depleted ovarian function, and similar deficiencies were proposed as the cause of the disease.

So, what Dr. Turkel did was,

Instead of considering the underlying cause of Down syndrome, I looked at the anomalies and realized that many of them were similar to those diagnostic of genetic diseases that I had already treated. I immediately considered the possibility of medical/nutritional therapy. I dispensed the three units of the "U" Series simultaneously, adding a broad spectrum of vitamins and minerals in pharmocological dosages, as well as enzymes, to correct the physical retardations that I attributed to malnutrition caused by the accumulations.

Peter is who brought Dr. Turkel into the realm of patients with DS and mental retardation, as Turkel writes on page 6,

Peter improved and news about the "U" Series spread. With few exceptions, since the 1950's, I have restricted my practice to the treatment of patients with Down syndrome and other diseases associated with mental retardation.

This finishes the first post about Dr. Turkel's book. I will leave you waiting for the next post to find out what comes next :).



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31 for 21: History of Targeted Nutritional Intervetion

I've decided to start to go over Dr. Henry Turkel's book which he wrote in the 1980's. Dr. Turkel was one of the first doctors to use nutritional supplementation in people with DS. The first post covering his book is scheduled to post tomorrow. But, before that, I thought it would be helpful to share an article which is in our book that goes over the history of Targeted Nutritional Intervention (TNI).

The History of Targeted Nutritional Intervention
By Qadoshyah Fish

Henry Turkel

The idea of giving vitamin supplements to individuals with Down syndrome has been around for many years.  It started in the 1950’s with Dr. Henry Turkel’s work¹. The effects and all that the extra chromosome did were not yet known at that time.  Therefore, Dr. Turkel’s work was, in a way, working in the dark.  It was not until 1974 that researchers began to realize what genes were on the 21st chromosome. It was not until a few years later that it was discovered some of these genes were actually being over-expressed in patients with Down syndrome and therefore causing some or all of the problems associated with Down syndrome. This would not be fully realized until years later when the Human Genome Project was done in the 1990’s.  In the 1970’s and years prior, it was thought that the genes from the extra chromosome were “turned-off” and played no role once the person was born, as can be seen in this quote from Dr. Turkel’s book,

The medical consensus that there were no metabolic imbalances in Down syndrome was so deeply entrenched that as recently as 1977, some medical students were still being taught that the extra genes encode structural defects before birth and then “turn off” (Expert’s testimony in Superior Court, Los Angeles, California #C 88260). (Medical Treatment of Down Syndrome and Genetic Diseases by Henry Turkel, M.A., M.D., Ilse Nusbaum, M.A. Copyright 1985. Page 172)

Dr. Turkel’s supplement was called the “U Series.”  It was a protocol with a variety of vitamins, minerals, drugs and many other nutrients to be taken throughout the day. Because Dr. Turkel’s work was without all the medical research that we have today, the doses of vitamins and nutrients that were given patients were very large “mega doses” of nutrients. His protocol was conceived after the father of a boy with Down syndrome approached Dr. Turkel in 1940 about a “possible treatment for his son.” Dr. Turkel’s “U Series” helped this child and therefore word spread about the “U Series.” In the 1950’s Dr. Turkel restricted his practice, with a few exceptions, to only patients with Down syndrome and other forms of mental retardation.  Dr. Turkel saw many improvements in the patients in which he used the “U Series.”

In 1959, Dr. Turkel applied for a “New Drug Approval” for his “U Series” from the Food and Drug Administration, but they denied Dr. Turkel’s appeal for approval. It was denied because the FDA did not consider the newly discovered implications of the extra genes on the extra chromosome 21 and therefore “concluded that since the ‘U’ Series could not remove the chromosome, it could not help the patients.” (ibid, page 209).  The FDA stopped Dr. Turkel from interstate distributing of the “U Series”, but he was legally able to sell the “U Series” within the state of Michigan.

Dr. Jerome Lejeune, who discovered the cause of Down syndrome, Trisomy 21, was also using vitamin and nutritional supplements with his patients with Down syndrome during the 1960’s. He was not using the “U Series,” but he was using some of the same vitamins and nutrients that were in the “U Series.”

Jack Warner

Dr. Jack Warner started his private practice in the early 1960’s². A few years after beginning his practice, Dr. Warner saw his first patient with Down syndrome.  It was then that Dr. Warner started extensively researching Down syndrome.  In 1984 his research led him to meeting Dr. Turkel. Dr. Warner was  impressed with the good results that he saw with the “U Series” that he started referring many of his patients to Dr. Turkel.  After constant research and continuing to see the beneficial effects from the “U Series” it led Dr. Warner to several other doctors and biochemists from the Linus Pauling Institute. This gave new knowledge and showed the increased benefits and effectiveness of certain nutrients from new research which led Dr. Warner to design the High Achievement Potential Capsules (HAP Caps) to be used with patients with Down syndrome.

HAP Caps were formulated in an FDA laboratory and received FDA approval in 1986. Unfortunately Dr. Warner’s research and HAP Caps have “fallen by the wayside” since his death in 2004.

Nutrichem’s MSB Plus

In 1982 Kent Macleod met the mother of a child that was severely brain damaged and had seizures³. He was able to treat this child with certain vitamins and it helped him tremendously, stopping his seizures. This mother began to research how nutritional supplements may benefit her son and found the work of Dr. Henry Turkel.  She asked Macleod to look at the research and findings of Dr. Turkel. She set a meeting up with Macleod and some mothers of children with Down syndrome to discuss the work and claim of Dr. Turkel. At this meeting, Macleod told the parents that if he were to consider this treatment, he would change Dr. Turkel’s formula.  Therefore, Macleod started to develop the first MSB Plus formula. Macleod’s work with children with Down syndrome continued to grow slowly over the years by word of mouth as parents told other parents the health benefits.

In the early 1990’s, Macleod was contacted by a mother, Dixie Lawrence, who’s adopted daughter had Down syndrome. Dixie asked Macleod if he would consider customizing the MSB formula based on her daughter’s blood work results.  At this time there was research and work being done in France by Dr. Marie Peeters-Ney and Dr. Jerome Lejeune on amino acid deficiencies being linked to certain genes on the 21st chromosome. After hearing the positive reports by parents who had been giving their children MSB Plus for the past 10 years and seeing the research done in France, Macleod was convinced to work with Dixie on a customized formula for her daughter.  Interest in Nutrichem’s MSB Plus grew tremendously after Dixie aired on the Day One program in 1995.

Today Nutrichem still provides their MSB Plus formula to thousands of families all over the world. 

International Nutrition’s Nutrivene-D

Nutrivene-D was originally developed by Dixie Lawrence Tafoya for her daughter with Down syndrome in the early 1990’s⁴. Dixie learned of Dr. Turkel “U Series” and was able to find Dr. Turkel in Israel where he had retired.  Dr. Turkel informed Dixie that he was not seeing patients anymore and that he had left his “U Series” to a pediatrician, Dr. Jack Warner, in the U.S.⁵. Dr. Warner greatly altered the “U Series” formula, which would now be known as the HAP Caps. Dixie decided to pursue this further and therefore she and 30 other families met with Dr. Warner.  The HAP Caps did not have much impact on Dixie’s daughter.  By this time research had been published that showed metabolic differences in patients with Down syndrome.  Using this research, input from numerous scientists and her daughter’s blood and urine analyses, Dixie started to develop her own TNI formula. Dixie “fine tuned” the formula by looking at the specific abnormalities measured in her daughter’s blood and urine testing.  

The scientists who were initially involved by researching abstracts and articles which documented metabolic and nutrient concerns in Down syndrome also helped reference the TNI formula to the U.S. RDA for safety.
Today, the Nutrivene-D formula still uses scientists and doctors to make updates and improve their formula based on current research and studies which are done. Certain nutrients may be added or changed, as new research emerges. The Nutrivene-D formula is used by thousands of families throughout the world.

Conclusion

Since the calm beginnings in the 1950’s and Dr. Turkel’s approach with “mega-doses” of nutrients, to where we are at currently with Nutrivene-D, it has been a long path and will continue to be an ever changing path as new research emerges. Dr. Turkel started with a good idea, but thanks to new research, and much work to scientists, parents, and doctors, we can now safely give children with Down syndrome a formula which is “targeted” to meet their specific metabolic and nutrient needs. 

1)    Medical Treatment of Down Syndrome and Genetic Diseases by Henry Turkel, M.A., M.D., Ilse Nusbaum, M.A. Copyright 1985
2)    Warner House Clinic History. http://www.warnerhouse.com/
3)    Down Syndrome and Vitamin Therapy, Unlocking the Secrets of Improved Health, Behaviour and Intelligence by Kent Macleod. Printed October 2003
4)    A Circle of Friends II by Aunt Gini Mullaly & Deborah Saxton-Bolt. Copyright 2000.
5)    Smart Drugs & Down’s Syndrome by Steven Wm. Fowkes & Ward Dean, M.D. February 14, 1994 issue of Smart Drug News. [v2n10]




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31 for 21: Glutathione

Side note: There was a mis-link on the post from yesterday regarding the Down Syndrome awareness shirts. The correct link is on that post, but you can also order the shirts from here.

There was some recent discussion on the Einstein Syndrome list (I know I mention this list frequently, but it's such a beneficial list!) about Glutathione (GSH) and if it's beneficial or not.

Bottom line: Yes, it's very beneficial!

But, I'll get to more detailed information here :).

L-Glutathione is an amino acid, which is a tripeptide (made up from 3 other amino acids). It's also a potent antioxidant and helps with many different functions in the body.

One of the best articles I have ever read on Glutathione and it's many mechanisms is Glutathione: Systemic Protection Against Oxidative & Free Radical Damage, which you can view as a full text here.

Glutathione is essential in the body's antioxidant system. As one quote from the above study says,

Antioxidants are the body's premier resource for protection against the diverse free radical and other oxidative stressors to which it invariably becomes exposed. the antioxidant defense system is sophisticated and adaptive, and GSH is a central constituent of this system

 Another interesting quote,

The consequences of sustained GSH depletion are grim. As cellular GSH is depleted, first individual cells die in those areas most affected [my note: we have lots of cell death already going on in DS]. Then zones of tissue damage begin to appear; those tissues with the highest content of polyunsaturated lipids and/or the most meager antioxidant defenses are generally the most vulnerable. Localized free-radical damage [my note: which is an issue in DS, due to low antioxidant levels & high oxidative stress] spreads across the tissue in an ever-widening, self-propagating wave. If this spreading wave of tissue degeneration is to be halted, the antioxidant defenses must be augmented.

Because Glutathione is low in people with DS and because it plays such a vital role in the immune system, it's important for us to try to help raise the levels of Glutathione in the body. Nutrivene-D does have Glutathione in it.

But, there is one tricky thing with GSH.

It's not very easily absorbed, although it can be absorbed. The best form of GSH is Reduced L-Glutathione. There are also some other forms of GSH called Lipsomal GSH, sublingual GSH and I believe there is also a Glutathione patch that people in the Autism community use. All of the above forms are supposed to be absorbed pretty well.

Methylcobalamin B12 also has been shown to help raise Glutathione levels in a study done by Jill James.

Someone may wonder about using N-Acetyl-Cysteine (NAC) to raise Glutathione levels. If you do much research, you will see this mentioned when talking about ways to raise Glutathione. From the research I have done, NAC should not be used in Down Syndrome. It has been shown to increase oxidative stress in people with DS and it also appears that it can cause leaky gut. Neither of which are needed in anyone, let alone someone with DS who is already struggling with increased oxidative stress and possibly gut issues.

Finally, one more interesting note about Glutathione from the above study,

Many pharmaceutical products are oxidants capable of depleting GSH [my note: Glutathione] from the liver, kidneys, heart, and other tissues. The popular over-the-counter drug acetaminophen [my note: active ingredient in Tylenol] is a potent oxidant. It depletes GSH from the cells of the liver [my note: which is where GSH is made & stored], and by so doing renders the liver more vulnerable to toxic damage.

Some may say it doesn't really matter if a drug such as Tylenol is used, if it's used in moderation. If you are comfortable giving your child Tylenol at various times, that's fine. It may be necessary at some times. We do not give Tylenol to O because of the concern that it would deplete already low Glutathione levels. There's more info on GSH and the Acetaminophen issue here.

*Don't forget to enter the book giveaway, which ends on November 2nd!*

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31 for 21: O's Vitamin Protocol

I thought I would share the supplements we give O every day. I often share what we give him and it's on the site here. But, it can never hurt to share it again :).

Morning:
1/2 teaspoon Nutrivene-D Advanced Daily Antioxidant Supplement (Microencapsulted powder)
1 teaspoon (2,000mgs) Nutrivene Longvida Curcumin Powder
2 Nordic Naturals ProDHA Strawberry Flavored gel cap
1 capsule (30 mgs) Zinc
1 1/2 tablets of Nature's Way Ginkgold Ginkgo Biloba
2,000 IU's  Liquid Vitamin D
250mg of L-Carnosine

Evening:
1/2 teaspoon Nutrivene-D Advanced Daily Antioxidant Supplement (Microencapsulted powder)
500mgs TriMethylGlycine (TMG)

1/2 lozenge (500mcg) Jarrow Formulas Methylcobalamin B12
1 capsule Nutrivene-D Nighttime Formula



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31 for 21: Thoughts on Using Nutrivene

A couple weeks ago someone (an anonymous person) left a comment on this blog post.

I saw their comment and hesitated publishing it, but I thought it would be worthy of addressing. So, to the anonymous person who left this comment, I hope this helps clears some things up.

My wife and I tried Nutrivene for quite a few years with our daughter with Ds. We used to visit with Dr Leichtman and would use the Nutrivene religiously. However, we had to take her off of the Nutrivene due to her being diagnosed through Stanford with Kawasaki disease. After being off of the Nutrivene, we see that all of her blood tests come back looking the same, except not so much elevation in excessive vitamin levels. Her growth still remains normal and she is progressing in leaps and bounds due to working with her daily at home and given speech therapy. She is mainstreamed in a 1st grade class with no aid. She's doing great! We were warned by most of our Dr's that it might not be beneficial and may be even harmful to her with those levels of vitamins, but we still tried it for quite a while. After doing more research, it looks like the medical community is on the same page with those Dr's, but those with an interest in Nurtivene and similar supplements still sing their praises. I'm not saying to stop using it, but do some unbiased homework if you are thinking of putting your child on any supplement and make an informed decision from your own research.

I have a few comments to make on this and I will list them all out here.

First off, I'm sorry to see the little girl had to be taken off of Nutrivene and I'm sorry to see she was diagnosed with Kawasaki Disease.

What I really want to address though is some of the statements regarding Nutrivene.

This little girl may very well have okay blood levels right now and may be progressing great right at the moment. But, what a lot of people don't seem to understand, is that the "bad effects" of the extra 21st chromosome in Down syndrome, causes problems which are mainly seen down the road in the teen-adult years. So, while the child may be doing well in her childhood years, she is very likely to have a lot of problems as she gets older. Or, if anything, early onset Alzheimer's.

The way I view it is, that research shows what bad processes, overexpressions, nutrient lacks, etc, the additional chromosome causes. So, I am going to do all I can to try to combat the problems that are present in the body of a person with Down syndrome. I am going to give something like Nutrivene to my brother in the hopes that he will not get early onset Alzheimer's, leukemia, dementia, excessive neuronal loss, etc. I can't reverse all the bad processes that the extra chromosome causes, but I am going to "target" the areas that research has shown can be targeted.

It's no surprise to me that the person who left this comment was warned by most of their doctors not to give Nutrivene. That shouldn't be a surprise. The general medical establishment does not believe that something like targeted nutritional intervention will do any good for someone with DS. The question I ask to that is, why do you recommend a multivitamin that is targeted for the general population? Why is it so unfathomable to have a multivitamin (which is all that Nutrivene is) that is targeted for the population with Down syndrome? It shouldn't be any big deal, but it is to many doctors and I don't get why. After all, people with DS have a very different genetic make up than the general population and therefore have different needs. There is research to show that vitamins are good for the general population, so why not look at the research which shows that certain or extra vitamins are good for the population with Down syndrome.

Another statement this person said in their comment was that something like Nutrivene "may be even harmful to her with those levels of vitamins." I've heard this statement a lot over the years. But, I have not seen one single bit of evidence to show that the dosages of vitamins in Nutrivene (or MSB Plus, etc) could cause any damage. If these levels of vitamins were so harmful, there would be more reports about it. But, the truth of the matter is, there are thousands of families using targeted nutritional intervention with their child with lots of success. If someone has proof of the supposed "harmfulness" of Nutrivene, I'd be glad to see it. Thus far, I have not seen anything, other than people saying their doctor told them it may be harmful.

Another thing that I wanted to make very clear from this commenter, was the statement where they say "...those with an interest in Nurtivene and similar supplements still sing their praises." Quite frankly, I was shocked by that statement. This person claims to have done research, but I must say, they did not do very good research. To say that those who have an "interest" in Nutrivene are the ones promoting it, is bogus. Dr. Leichtman does not benefit from any sales of Nutrivene. My family does not receive anything from Nutrivene, International Nutrition, etc to encourage us to promote TNI. Nutrivene does not do any affiliate programs, so from what I know, there is no one who is being "paid-off" (for lack of a better term) by Nutrivene to promote TNI.

We use TNI and encourage others to use it, because I know it works. I know what research shows and I don't want my brother to become another statistic. Out of love for my brother, and other individuals with Down syndrome, I encourage the use of TNI. Dr. Leichtman promotes TNI, because he has seen the tremendous benefits it gives to people with DS.

I agree that people who are looking into using Nutrivene or any TNI, should do research and do their homework. Look at both sides of the issue - those who are against it and those who promote it. But, do so with open eyes. Look at the research and what it shows. Look at the thousands of people who are using TNI with amazing results. What do you have to lose (except dollars)? You have the potential to gain a lot, because of the help it may give your child. That's the conclusion we came to when we first started using Nutrivene. And I am so thankful that we tried it, because it changed O's life.



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Antioxidants & Dementia

A new study came out recently on individuals with Down syndrome who had dementia. The study was looking at antioxidant supplementation to combat dementia. I will paste the study here and comment below it.

Down syndrome and dementia: A randomized, controlled trial of antioxidant supplementation.

Lott IT, Doran E, Nguyen VQ, Tournay A, Head E, Gillen DL.
Am J Med Genet A. 2011 Aug.
Department of Pediatrics, School of Medicine, University of California, Irvine (UCI), Orange, California; Department of Neurology, School of Medicine, University of California, Irvine (UCI), Irvine, California. itlott@uci.edu.

Individuals with Down syndrome over age 40 years are at risk for developing dementia of the Alzheimer type and have evidence for chronic oxidative stress. There is a paucity of treatment trials for dementia in Down syndrome in comparison to Alzheimer disease in the general (non-Down syndrome) population. This 2-year randomized, double-blind, placebo-controlled trial assessed whether daily oral antioxidant supplementation (900 IU of alpha-tocopherol, 200 mg of ascorbic acid and 600 mg of alpha-lipoic acid) was effective, safe and tolerable for 53 individuals with Down syndrome and dementia. The outcome measures comprised a battery of neuropsychological assessments administered at baseline and every 6 months. Compared to the placebo group, those individuals receiving the antioxidant supplement showed neither an improvement in cognitive functioning nor a stabilization of cognitive decline. Mean plasma levels of alpha-tocopherol increased ∼2-fold in the treatment group and were consistently higher than the placebo group over the treatment period. Pill counts indicated good compliance with the regimen. No serious adverse events attributed to the treatment were noted. We conclude that antioxidant supplementation is safe, though ineffective as a treatment for dementia in individuals with Down syndrome and Alzheimer type dementia. Our findings are similar to studies of antioxidant supplementation in Alzheimer disease in the general population. The feasibility of carrying out a clinical trial for dementia in Down syndrome is demonstrated. © 2011 Wiley-Liss, Inc.

So, this study used 900IU of Vitamin E, 200mg of Vitamin C and 600mg of Alpha-Lipoic Acid (ALA).

First of all, those doses are pretty low, particularly for people who already have dementia. It's very, very late to start treatment, although it could still help.

While this study didn't find any changes in the dementia of these patients, they did find an increase in Vitamin E levels by 2-fold in the treatment group. That, in and of itself, is going to help greatly.

Knowing what we do know about Vitamin E and it's antioxidant effects, if the treatment is started early enough (in childhood), it's very likely to be able to prevent dementia.

I find it quite silly for the conclusion of the study to say that "antioxidant supplementation is safe, though ineffective as a treatment for dementia in individuals with Down syndrome." Well, when you already have people with DS who have dementia, don't ya think it's kind of late in the game to treat it? It's already caused SO much irreversible damage. The "treatment for dementia" should be started a whole lot earlier than that. Early as in the childhood years.

From what I know through other research and in talking with other doctors, especially Dr. Leichtman, antioxidant supplementation, if started early enough can and does prevent dementia.

In reality, it's never too late to start antioxidant supplementation, but the earlier you start it, the better. The less damage that will be done. Damage that can be irreversible.

Dr. Leichtman, has been working with people with Down syndrome of all ages for many, many years now. He has specifically been working with them with nutritional (antioxidant) supplementation. One of his comments in regards to this study is below. It is encouraging for those who have young children who are just starting Nutrivene or an antioxidant program, because it really does work.

In an ideal world where we can get everyone with DS supplemented young, the younger the better. I can document it holds off degeneration for a long time. I still see people who were placed on the old Turkel protocol 30-40 years ago and are now on NVD protocol and none of them have dementia so I know this works.

That's why I encourage any new family to start your child on at least Nutrivene as early as you possibly can. Oxidative stress starts to take hold while the baby is in utero and it only increases from there, if nothing is done about it.



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Nutrivene Formula Changes

International Nutrition made several changes to the Nutrivene-D Daily Supplement a couple months ago. I was going to post up as to what they were sometime ago, but I kept forgetting. So, here we go!

"Addition of Vitamin K2 (as Menaquionone-7) at 100mcg at ful dosage. -Research suggests that Vitamin K promotes cardiovascular health, healthy bones, and cartilage.

Increase in Vitamin D3 to 2000IU at full dosage. -Studies indicate that Vitamin D improves immune function, aids calcium absorption in the gut, promotes modulation of cell growth, and reduces inflammation.

Ingredient source change in Vitamin E from Succinate to Mixed Tocopherols, a more nutritionally complete form of E. - Vitamin E is important for heart health and plays a critical role in protecting cell membranes by neutralizing free radicals.

Removal of Blueberry Extract as possible allergens.

Removal of Curcumin as possible gastrointestinal issue in some individuals."

The removal of  Blueberry Extract is kind of disappointing, as I was glad we didn't need to supplement extra Blueberry because it was already in it. So, that now means that it's time to start supplementing blueberry extract again. We used to do it years ago before Nutrivene had Blueberry in it.

The removal of Curcumin is not that big of a deal, as the full Trisomy 21 Research Foundation Recommended Protocol recommeds using Longvida Curcumin, which is a better, more viable source of Curcumin.



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Which Blood Tests?

There's a question that is commonly asked in regards to what blood tests should be done for people with Down syndrome, both on DS forums & listservs and in emails I get. I thought I would put a post up with an explanation of each test here for easy reference whenever the question arises! And also, for those who haven't heard of or thought of what the recommended blood tests are.

The list, taken from Dr. Leichtman's website:

"-CBC every 6 months until 6 years of age.

-T3, T4 and TSH every year for life.

-Metabolic Testing:
        If working through a local lab only: Obtain serum levels of Vitamin A, iron, ferritin, zinc, selenium, and homocysteine, IgA tissue transglutaminase anitbody, endomyseal antibody."

Now, to explain the testing.

1) CBC or Complete Blood Count. This tests all the levels of white blood cells, red blood cells, and everything that has to do with blood. This test is mainly to look for leukemia, because it can be more common in kids with Down syndrome.

2) T3, T4 & TSH (Thyroid Stimulating Hormone). Ideally, you should have the Free T3 & Free T4 tested. If there are concerns that the thyroid may not be functioning well, you can also get a test for T3 Uptake. These tests are all to keep an eye on thyroid problems - hypothyroidism, hyperthyroidism, etc. Thyroid problems, particularly hypothyroidism is at an increased risk for people with Down syndrome.

3) Vitamin A. This is to keep a level on a fat-soluble-vitamin which is given kids with DS to ensure that the level does not get too high.

4) Iron & Ferritin. These tests are to keep an eye on, well, iron levels ;). Ferritin is a very important test in addition to the Iron test, because it is the actual stores of Iron in the body. If ferritin (the storage of iron) is low, then you have a problem.

5) Zinc. This test is watch for deficiency in zinc. Zinc is commonly deficient in people with Down syndrome. O was deficient in zinc from the first time we tested him, which is why he takes 25-30mg/day of extra zinc. But, we still routinely test him to make sure that his levels stay good.

6) Selenium. Selenium is another thing which is commonly deficient in people with DS, which is why it is recommended that it is tested. O was also initially deficient in selenium, but since taking Nutrivene-D, his levels have normalized.

7) Homocysteine. The messed up SAM cycle (because of the overexpressed CBS gene), causes a folate trap, where the body is not able to adequately use folate. Therefore one of the problems it creates, is low homocysteine levels. Homocysteine is very important for proper mental function and if it's too low or too high, it causes problems. It can be hard to correct this low level of Homocysteine, but there is supplementation that can be done to help.

8) IgA tissue transglutaminase anitbody, endomyseal antibody. These tests are looking for Celiac Disease, which is another thing commonly seen in the DS population. This routine testing may be able to identify Celiac before it becomes a severe problem.

One thing I stress all.the.time, is to get a copy of your child's lab results. It happens all too often where the doctors do not truly tell the parents the complete results. It's happened to us, even though we request copies of the results!

Even though the lab results may be within "recommended range", it doesn't mean everything is okay. Is it on the low end of the range (deficient)? The high end of the range (too much of something)? Is something just not right (like a slightly high MCV, most people will not catch it)?

Ask questions. Request copies. Research. You'll be able to help your child's health a lot better. And potentially save yourself a lot of trouble.

Plus, make sure you get someone who knows how to do hard draws, if your kid is a hard stick. We don't put up with anything and always ensure that the person who draws O's blood knows how to get it the first try.




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A visitor

Yesterday we had a family come by for a visit from Thailand. They are teachers in Thailand and were here for the summer visiting family. I've emailed this family off and on for the past couple months and we met originally via the Einstein-Syndrome listserv.

This family's little girl with Down syndrome is just 3 months old. She was so adorable and was doing so well! Her tone was great and she was very aware of her surroundings.

The family wanted to come by our place just to talk about Down syndrome, see how O is, because he's quite a few years older than their little one, and ask questions about what they can do for their little girl.

They are blessed to be able to have found out all that they have when their little girl is so young. She's been on Nutrivene since she was about a month/month and a half and they are slowly adding other supplements.

It was very nice to be able to talk with them about all that we've learned over the years. All that we've done with O. How we have done things with him. Everything from nutrition, to blood work, to therapy (speech, occupational, physical, etc). After they left, I thought of so many more things I could've shared with them!

When they left, I sent them with a copy of our book, since they only had the eBook. I'm very thankful that God has given us the ability to research so much and learn so much to be able to be in the position to help new families of kids with Down syndrome.

It's helpful to new families in so many ways. Even in just the simple fact of seeing O and how he is living a pretty normal life and doing well, all by the grace of God. When you're given such a "doom & gloom" prospect after the initial diagnosis of Down syndrome, it's nice to be able to see older babies, toddlers & kids with Down syndrome and how they are doing. It's encouraging, as the family who was over yesterday said.

Learning How to Swallow Pills

One of the most challenging parts of giving a lot of vitamins and supplements to a young child is how to get them to take it. Often times, they taste gross, so that adds a big challenge.

O has taken his vitamins well for a long time now (since he was 8 months old!). We usually mix the vitamins in Apple Butter or some kind of organic fruit spread. Using Nutrivene-D's Microencapsulated formula also makes a huge difference. It helps mask the taste a lot!

Well, now that O is getting older (6 yrs old), we decided to try a pill swallow cup that we had heard about years ago. That cup is the...

Oralflo Pill Swallowing Cup

We tried it with a couple of the older kids who have difficulty swallowing vitamins and it worked just as described. So, we tried it on O the next day and what do you know, it worked with him too! Perfect-o!

It hasn't been without it's challenges though. O likes to stick his tongue in the little pill spot. I think it's just the way he drinks with this cup, since it's slightly odd shaped.

But......

We've been able to work around that. Some of the vitamins (particularly the fish oil gel capsules) tend to get stuck in the little spout at times. So, we stick the vitamin in O's mouth and then have him drink out of the cup (without the lid on). And we remind him to drink & swallow.

It works pretty much every time. He just needs to get it down a little bit better. But, we haven't had any hiccups with it for a couple days.

So, here's to hoping we can be moved to all capsules or pills by the next time we have to order Nutrivene!

Doing Something, a Little Bit, or Nothing?

Recently there was some discussion on the Einstein-Syndrome list in regards to what can be done for babies with DS.

Some people may say giving certain supplements at a young age is a little too much, some may give just a few things to their child and as they get older give more. But, there are others who want to do as much as possible and give their child everything they can, that is safe, to give their child the best chance.

We ride the fence in between the two. So long as we are well researched in what we are giving O, we will give it to him at any age. If we are uncertain in it, then we will wait or start at a low dose.

There's neither a right nor wrong. Personally, I think it is best for some supplements to be started at as early of an age as possible, while there are other supplements, that I feel will be fine to be started at a slightly later date. When I say later, I mean 12 months old or so. In "early age", I'm talking about 1 month old or less.

With that said, there was one mother from Finland, Tuija P. who shared her experiences and I thought it was interesting. With Tuija's permission, I'm posting it up here. Tuija has had the "advantage" of seeing people with DS in several generations, as she will describe.

I see around me here people with DS in three generations. My own sister, now 33, her boyfriend, just turned 60 and then our little precious daughter "S," 17mos.

The 60-year-old man is very sweet natured, but has never spoken understandably nor had any other means of communicating. He has been living in a group home until recently, as he had to move to a more guarded facility because he has developed Alzheimers and started wandering outside during the night. Fortunately he hasn't had any other DS related complications.

My sister. When she was born, it was very uncommon to take such a baby home. My sister was fortunate in that sense. She had no nutritional treatments, a little therapy of some kind, went to kindergarten with typical kids and then to special school, where she didn't learn much, barely to read and write. She has been an easy child and adult as well. She learned to speak just understandably before school age. She has never been very high functioning academically. She had leukemia when she was 10 to 12, but survived that. From then on she has been considerably overweight. No one has really paid attention to that. She is living in a group home, the same as where her boyfriend was living, is happy there and has learned many new things during her adulthood. Nowadays she is very skilled at quilt making, for example.

She has always been a very typical such DS person, who hasn't had any special treatments or targeted intervention in any way. Just so much mental delay that it has not been possible to have any real relationships with typical people. And she has never been capable of taking care of herself very much.

After those experiences my situation wasn't the easiest one to have a child with DS. Ok, things could have been worse, but I didn't know any worse.

Ok, with that as an intro, here we are anyway with our sweet little girl "S." I got to know about DS while still pregnant and when I finally accepted the idea of having a child with DS, I knew nothing would stop me from doing everything I can to make life as good for her as I can. From then on we have been on TNI. We started prenatally.

I don't know life without "S" on TNI, I could only guess. "S" was born with a severe heart condition which required two open heart surgeries when she was 5 and 6 months old. But even before the surgeries "S" didn't suffer very much from her heart condition. She was an alert and active baby, started moving around the age of 3mos.

I stopped supplements during the stay in the hospital, both because of the surgeries and for my own ease of mind as I don't have any medical professionals here who support TNI. She recovered well and in the hospital she was undoubtedly the happiest baby there.  The hospital stay didn't seem to affect her development.

She has done well in all areas, though she has the typical delays and difficulties as well. She has been very healthy, no ear infections or many flus. She continues to be very active, playing with others and by herself, wanting to be held and hugged, laughing a lot, talking a lot, trying to say words occasionally. She is more of baby than our other kids in that age, but a very normally behaving baby so far.

I'm not saying TNI has definetely had an influence on her, but at least it is not doing anything bad. "S" is now on Nutrivene-D, probiotics, DHA, Longvida curcumin, acethyl-L-carnitine, CoQ10, cognizin citicholine, & gingko biloba. The last four we just recently started.

From my experience so far, "S" hasn't had any side effects and has been doing all together so well that I'm not going to stop giving any of those. I don't think I would have started gingko or those other three any earlier though. I haven't seen any leaps in development nor any regression either, just steady development. I haven't been doing as much research as many of you though.  I'm just reading your experiences and trying to think something in between. Some could say I am experimenting with my child, but honestly this is the only way I can do it.

Why, Oh Why?

Last week, a mother of a boy with Down syndrome called since she had seen our website. She had a lot of questions, because she said she needed help and wanted to learn more to help her son.

I spoke with her for around 20-30 minutes telling her a lot about TNI, oral motor therapy, autism related stuff, etc.

As I spoke with her, especially when it came to nutritional intervention, she said "Why have I never been told about this in the 10 years my son has been born?" I told her that we weren't told about it either. We had to research so much before we even ran across a hint about nutritional intervention. And with the countless hours we spent researching, it took us 8 months to find out about it.

When we did find out about Nutrivene, our curiosity about it was met with a lot of negativity on some online forums. It was hidden like a needle in a haystack. Why?

Oral motor therapy is also hidden quite well from many people. This mom who I spoke with, who has a 10 year old son with very limited speech, and who is even receiving speech therapy, had never heard of oral motor therapy. Why?

These two very basic interventions are so hard to find information about in the general literature regarding Down syndrome. In fact, most of the time, as the vast majority of parents would admit, they weren't informed about this in the literature they received when their child was diagnosed with DS. Why?

Targeted Nutritional Intervention is such a simple concept and something that has been researched and proven time and again for 60+ years. This was even used by the doctor who discovered what caused Down syndrome, Dr. Jerome Lejeune. He used nutritional intervention in people with Down syndrome with good success. Why is this not shown everywhere? Why is all the other research which shows how well nutritional intervention works not made well aware to everyone?

Some may say, "If nutritional intervention really worked, everyone would be using it." You know what, that's not the case. Nutritional intervention really does work. There are thousands of people using it with good success. But it still is very much kept on the down-low with the national DS associations, lots of doctors, social services, regional centers, etc. In fact, some of the national DS associations have articles written to say that nutritional intervention doesn't work. Why is that?

The same goes with oral motor/placement therapy. It works so incredibly well with a lot of people. But, it's not the first thing offered to a child with weak muscle tone in the mouth. Again, I ask, why?

There are a lot of questions and not many answers. It makes absolutely no sense to me that something so simple would be hushed by so many. I have a lot of suspicions as to why these things, particularly the nutritional intervention, is kept hidden. But, we don't know for sure.

I do know one thing. Dr Turkel, one of the first doctors who used nutritional intervention in DS, was banned from selling his vitamin protocol anywhere outside of Michigan from the FDA. Dr. Turkel experienced so much hassle from the FDA because of his protocol. I'll try to share some of the info from his book on here at some point. It's very interesting, but it really makes you wonder why there was such an issue? It's simply nutritional supplements.

So, this post will end with no answers, but a lot of questions.

Lord willing, I will continue to share about TNI & oral motor therapy with families, because I have seen the immense benefits they have. I know they work.

Vitamin D Helps Cognitive Function

It is recommended to give extra Vitamin D, even if your child is on the Nutrivene protocol. Here's more good reason to give extra D, since it helps with so many things in the brain. One area it helps with is improving the hippocampus, which we know has some challenges in Down syndrome. So, here is the article.

O takes 2,000mgs a day of Vitamin D from Carlson's labs.

New studies show low vitamin D levels may impair cognitive function

The push to prevent skin cancer may have come with unintended consequences—impaired brain function because of a deficiency of vitamin D. The “sunshine vitamin” is synthesized in our skin when we are exposed to direct sunlight, but sunblock impedes this process. And although vitamin D is well known for promoting bone health and regulating vital calcium levels—hence its addition to milk—it does more than that. Scientists have now linked this fat-soluble nutrient’s hormonelike activity to a number of functions throughout the body, including the workings of the brain.

“We know there are receptors for vitamin D throughout the central nervous system and in the hippocampus,” said Robert J. Przybelski, a doctor and research scientist at the University of Wisconsin School of Medicine and Public Health. “We also know vitamin D activates and deactivates enzymes in the brain and the cerebrospinal fluid that are involved in neurotransmitter synthesis and nerve growth.” In addition, animal and laboratory studies suggest vitamin D protects neurons and reduces inflammation.

Two new European studies looking at vitamin D and cognitive function have taken us one step further. The first study, led by neuroscientist David Llewellyn of the University of Cambridge, assessed vitamin D levels in more than 1,700 men and women from England, aged 65 or older. Subjects were divided into four groups based on vitamin D blood levels: severely deficient, deficient, insufficient (borderline) and optimum, then tested for cognitive function.

The scientists found that the lower the subjects’ vitamin D levels, the more negatively impacted was their perform­ance on a battery of mental tests. Compared with people with optimum vitamin D levels, those in the lowest quartile were more than twice as likely to be cognitively impaired.

A second study, led by scientists at the University of Manchester in England and published online this past May, looked at vitamin D levels and cognitive performance in more than 3,100 men aged 40 to 79 in eight different countries across Europe. The data show that those people with lower vitamin D levels exhibited slower information-processing speed. This correlation was particularly strong among men older than 60 years.

“The fact that this relationship was established in a large-scale, clinical human study is very important,” Przybelski says, “but there’s still a lot we don’t know.”

Although we now know that low levels of vitamin D are associated with cognitive impairment, we do not know if high or optimum levels will lessen cognitive losses. It is also unclear if giving vitamin D to those who lack it will help them regain some of these high-level functions.

Because cognitive impairment is often a precursor for dementia and Alzheimer’s disease, vitamin D is a hot topic among Alzheimer’s scientists, who are racing to answer these questions. Przybelski, for example, is planning a study of vitamin D supplements in healthy, normal elderly adults living in an assisted-living community to see if it will affect their incidence of Alzheimer’s in the long term.

So how much is enough vitamin D? Experts say 1,000 to 2,000 IU daily—about the amount your body will synthesize from 15 to 30 minutes of sun exposure two to three times a week—is the ideal range for almost all healthy adults. Keep in mind, however, that skin color, where you live and how much skin you have exposed all affect how much vitamin D you can produce.

If Supplements Don't Increase IQ...

There was a question posed last week by a mother of a toddler with DS on one of the email groups I am on. The topic of low IQ's came up and she asked why would someone (including herself) spend all this money & time on supplements and early intervention if it doesn't raise the IQ levels.

The question intrigued me, because I have never thought of it. And I thought I would bring the topic up on the blog here.

We give all the supplements to O & do so much with him as far as therapy goes, not to necessarily achieve a high IQ. But, to give him the best possible chance at being healthy & thriving. 

That is proven in the lives of those who have children with DS and also in research studies.

Early intervention helps children with Down syndrome achieve key milestones in an earlier time frame. It helps stimulate their brain, helps strengthen their muscles & improves their tone.

Targeted Nutritional Intervention helps support proper brain function & overall health. It helps reduce certain metabolic levels which are in excess due to the third 21st chromosome. It helps increase levels of certain nutrients which are diminished because of the extra chromosome. It helps their immune system. It helps their tone. And I could go on and on with what all it can help!

With all that, never once has an IQ number come to my mind. The reason why we do what we do with O in regards to TNI & early intervention has nothing to do with increasing his IQ numbers. Honestly, I could care less what his IQ numbers are. I know that he is healthy, thriving and smart. That’s what matters. Not what any test might show.

Academic tests at his speech therapist have tested him a good 6 months to 1 year above his age. And that’s all by God’s kindness & mercy. Even if he were to test BEHIND (which he does in some areas), it wouldn’t be a big deal. He’s a blessing no matter what his IQ is.

The goal with giving supplements is what it does in the long run. It may help decrease O's chance of getting Alzheimer's or any of the other diseases that can come about because of the extra chromosome. As I said in this post, we have to look at it as a marathon, not a sprint.

Not in the long run of achieving the highest IQ on some academic test. No one needs a high IQ level from some test to say whether they are smart, or whether they are capable of understanding & doing well.

My little brother does understand. He is a smart little boy. He is thriving. He has excelled in his motor skills. And he's never had an IQ test done.

Oral Motor Development Started Young!

Andi Durkin, who is a mother on the Einstein-Syndrome list wrote to the list a few days ago with an amazing progress report on her little boy who has DS. He's just under 1 year old and is doing amazing in the oral motor area & his speech. Andi has worked hard & researched a lot on what she can do for him.

Sara Rosenfeld-Johnson (from TalkTools) says in one of her DVD's that if a child is doing OM therapy and the TalkTools program from a very young age (just a few months old), "normal" speech can be achieved. I think Andi's son is a great example of that with the progress that he has made so far. I'll just paste what Andi wrote below, since she outlines what they have done and how it has helped.

My husband, Kenny & I took Jett (11 months) to his first speech evaluation with Renee Hill of Talk Tools on Wednesday (through a scholarship from http://www.dsfflorida.org/). She was amazed! She said that she had to evaluate him using the typical scale, not the one for children with DS. She said he was on par and above the typical child. He has no tongue protrusion, great lip closure, strong jaw muscles, etc. He is on his way to clear speech! She said it was the easiest evaluation she'd ever done and had the least amount of suggestions.

A brief history of Jett's language success:

-He's been "babbling paragraphs" for many months. See/hear Jett at 3 months: http://durkinworks.blogspot.com/2010/06/jett-babbling-paragraphs.html.
-Randomly said clear words off and on starting with "Daddy" at six months. (okay, alright, go' boy, oh boy, hey)
-He said his first word of intention at 8 months old: "Water"
-Jett said his first two-word sentence on Sunday: "Poopy good-bye!" (I'll spare you the details!)

This progress didn't happen by accident, of course.

First, breast feeding helped to build his jaw muscles and help with tongue thrust, among many other things. (It was so difficult for the first month or so but he finally got the hang of it!)

Second, we've used James D. MacDonald's (jamesdmacdonald.org) communication methods since he was born.  You can see my stepson, Alex, mirroring Jett when he was 3 months old here: http://durkinworks.blogspot.com/2010/06/jett-milestone-day-talking-jett.html (My husband wrote that he started talking that day--but that wasn't the first day.)

Third, I read the article: The Oral-Motor Myths of Down Syndrome By Sara Rosenfeld-Johnson, M.S.,CCC/SLP (founder of Talk Tools) when Jett was 3 months old and followed all her advice. You can find the article in Qadoshyah Fish's book, Down Syndrome, What You CAN Do.  ( http://stores.lulu.com/gotdownsyndrome )

Fourth, Kay Ness gave an eye-opening/life changing speech to our DS group that guided me in many ways including emphasizing the importance of keeping our children's nasal and ear canals clear in order to develop proper speech. (http://senc.us/Down_Syndrome.html) Which eventually led to cranial sacral work, AIR tea and Dr. Block's methods to open his nasal passages & ear canal.

Fifth, through following Kay's ND program since 8 months, Jett has been developing his oral sensory skills (mesh feeding bag, massages, etc.) and increasing his vocabulary (flash cards, songs, etc.).

Sixth, Qadoshyah's blog entry about how to feed our children correctly helped prevent bad habits and showed how to use feeding as oral motor therapy: http://www.gotdownsyndrome.net/spoonfeeding.html

So, to Camille Gardiner (friend & DSFF), Kay Ness, Sara Rosenfeld-Johnson, Qadoshyah Fish, James D. MacDonald, Dr. Loi (TCM), Dr. Block, Vicki Booher (cranial sacral), Dr. Franz, and Kristin L. Worishcheck, the lactation specialist, who cheered me on, my mother and Kenny, Alex & Kathy Durkin....

  THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU!!!!

You can see more pictures/entries of Jett at http://durkinworks.blogspot.com/search/label/The%20Chronicles%20of%20Jett

I'm thankful the book, blog & website were all able to help Andi & Jett as well :).