Is the Supplement Causing This Problem?

A few months ago there was some discussion of the effects of Longvida Curcumin on the Einstein Syndrome list. There were some statements made where people thought Longvida had made their child sick more often, not sleep, etc.

Because of the research I have done, I had to chime in with some additional information. Whenever you give any supplement, you are going to have to watch for changes. But, to say a change that is happening 3-6 months after the supplement was started is because of such and such supplement, is not necessarily true. There are so many variables in life, that after so many months, you may not be able to say what issue is being caused by which supplement.

As with ANY supplement, not every child will be able to handle it. Or, maybe they can only handle certain amounts of it. Or, maybe they need a digestive enzyme to help them absorb it better. There's a myriad of reasons why a child may not be able to tolerate a supplement.

Personally, if my brother was getting sick more often, I wouldn't be looking at his supplementss as potentially causing the problem. I would look at what his supplements were lacking.

In other words, does he need more vitamin D? Are his zinc & iron levels good, etc? Maybe he needs more Glutathione to help his lungs/airway. The list of things to look at is huge!

Is there a certain vitamin interacting with another one to mess something up? Maybe I should split up the time when he takes certain vitamins.

From what I know, there is nothing in LC or any sort of TNI that would weaken a child's immune system. If someone can find otherwise, I'd be glad to hear it :). In fact, I have heard just the opposite - that Curcumin strengthens the child's immune system.

As far as negatively affected sleep from a supplement, I would look at a few things.

-What time of day does he take the certain vitamin?
-Can he not tolerate vitamins after a certain time of day?
-Is it really the vitamin or is there something else in effect?
-Is he growing or teething?
-Does he have any allergies?
-Is he too warm or too cold when sleeping, etc?



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Why is Glutathione low when Cysteine is high?

A question that I have thought many times, and was also recently asked is, "Why is Glutathione low when Cysteine (a component which makes up Glutathione) is in excess in DS?"

It's a good question. And a hard one at that!

Bottom line - No one really understands it all the way. But, this is what is understood:

There is excess cysteine due to the overexpressed CBS gene. Then there is also the overexpressed SOD1 gene causing a 50% increase in oxidative stress/free radicals. This increase in oxidative stress seems to cause a decrease in Glutathione, as there are not enough antioxidants (Glutathione being one of them) to match the amount of oxidative stress and free radicals which are present.

One of the best studies on the topic is, Homocysteine Metabolism in Children with Down Syndrome: In Vitro Modulation. One quote from the abstract says,

Plasma levels of cystathionine and cysteine were significantly increased, consistent with an increase in CBS activity. Plasma glutathione levels were significantly reduced in the children with DS and may reflect an increase in oxidative stress due to the overexpression of the superoxide dismutase gene, also located on chromosome 21.

 Another good article on this topic is Steven Fowkes article from CERI, Antioxidant Intervention in Down's Syndrome. This article is a few years old (written in 1998), but it is still interesting.




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Study on Impaired Methyl Cycle in DS

I came across this study the other day when I was looking up some studies for someone who had emailed me.

As most of us who are very involved in DS know, there is a big methylation problem in DS. This is due to the overexpression of the CBS gene (as the abstract below states).

Some children with DS are unable to tolerate "methyl donors", which are certain supplements, or even food sources. To try to help "normalize" the effects of the overexpressed gene, we supplement with extra TMG, and Methylcobalamin B12. It would be good to supplement with extra Folinic Acid as well, but my brother is one of those who cannot handle certain methyl donors. He is able to take some (like TMG & MeB12), but not others.

If you want to know more about the whole methylation cycle, a good book is Methyl Magic by Craig Cooney.

Anyways, onto the study,

Impairment of methyl cycle affects mitochondrial methyl availability and glutathione level in Down's syndrome.

Infantino V, Castegna A, Iacobazzi F, Spera I, Scala I, Andria G, Iacobazzi V.
Department of Chemistry, University of Basilicata, 85100 Potenza, Italy.
Mol Genet Metab. 2011 Mar;102(3):378-82. Epub 2010 Dec 9.

Abstract

In Down's syndrome there is evidence that increased gene expression coding for specific cystathionine beta-synthase translates directly into biochemical aberrations, which result in a biochemical and metabolic imbalance of the methyl status. This event is destined to impact mitochondrial function since methylation is a necessary event in mitochondria and relies on the availability and uptake of the methyl donor S-adenosylmethionine. Indeed mitochondrial dysfunctions have been widely described in Down's syndrome, but they have never been correlated to a possible mitochondrial methyl unbalance. In the present study we find that the mitochondrial levels of S-adenosylmethionine are reduced in Down's syndrome compared to control cells demonstrating the effect of the methyl unbalance on mitochondria. The possible role of methylation in mitochondria is discussed and some preliminary results on a possible methylation target are presented.




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Supplementing with S.O.D - Is it Good or Bad?

One of my blog readers left a comment on a post mentioning that they give their daughter S.O.D (SuperOxide Dismutase) as a supplement. In the meantime, I have had email correspondance with them and discussed this topic, but I thought it would be helpful to share here as well.

SuperOxide Dismutase itself is sold as a vitamin supplement by a lot of companies. In and of itself, SOD is not bad. It is a powerful antioxidant. But, as with almost anything, too much SOD, causes lots of damage.

The gene for SOD is on the 21st chromosome and is 50% overexpressed in Down Syndrome because of the triplicated chromosome 21.

One example of the increased SOD can be seen in the study, Increased superoxide dismutase and Down's syndrome,

The enzyme superoxide dismutase (SOD) is a constitutive enzyme coded by a gene located in Chromosome 21 (21q22.1). Thus, the tissues from patients with trisomy 21 contain 50% more SOD activity.

This triplication causes an increase in the hydroxyl radical, which causes free radicals. Free radicals then turn into oxidative stress. Oxidative stress causes apoptosis (programmed cell death). 

Because of this, I would not supplement with S.O.D. because it IS in excess in DS.  And the excessive amounts are not helping people with DS, but actually causing many problems.

In Down Syndrome there are not enough antioxidants to combat the increase in oxidative stress, because the antioxidants are low. Zinc is low in DS, because of the overexpressed SOD gene. Glutathione is low because of the overexpressed Glutathione Peroxidase gene.

There are so many other good antioxidants that you can give people with DS, such as Zinc, Vitamin E, Glutathione, Blueberry, Curcumin, Coenzyme Q10,  etc, that I would not want to supplement with a source that is known to be overexpressed in DS.

Is the supplemental form of SOD the same as the form that is overexpressed in DS? I don't know, but personally, I wouldn’t want to risk it. SOD is overexpressed from the time the child is in the womb and throughout their whole life.



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Confusion regarding Longvida Curcumin

There were some posts on several DS email groups regarding some comments Teresa Cody had made about Longvida Curcumin at the Orlando CMF (Changing Minds Foundation) conference. It was said that she stated that you could take Curcumin with Phosphatidylcholine (PC) and get the same results as Longvida Curcumin (LC).

I emailed Teresa Cody and asked her about this, because saying something along those lines is very misleading. This is her response, which I thought was beneficial to share,

No, I did not say that.  I said that Longvida combined curcumin with Phosphatidylcholine and that is what gets it across the BBB.  I read it on their site a few years ago.  Now instead of telling you what is in it, they say it is a proprietary mixture, or something like that.  I was just telling everyone that they needed PC combined with the curcumin to make it work, so just taking curcumin by itself won't do the same thing.  I use Longvida myself.  I wasn't telling them not to use it.  I'm not sure where they got that.

Longvida's site does explain the mechanism how LC works. But, I thought it would also be good to share just a little more information regarding this, in case others believe they may get the same result with just giving any Curcumin and PC.

A mom to a little girl with DS, Liora P., asked Verdue Sciences about this concern and the response is below. I have also linked to the PDF study which was sent that shows what is answered. .

Longvida is not a simple mixture of curcumin and phospholipids  Longvida is made with a patent-pending technology (Solid-Lipid Curcumin Particle or SLCP) that is a precise complex which includes phospholipids and other lipids and factors that are critical to its bioavailability and activity.

During development of Longvida a curcumin-phospholipid mixture was tested and it was not much of an improvement.  In fact, commercial versions of simple curcumin-phospholipid mixtures do not result in any free curcumin in blood, only the inactivated curcumin glucuronide which does not pass the BBB.  Attached is a study which shows that.

Link to study: http://www.gotdownsyndrome.net/LCvsCurcuminPC.pdf

I hope this will clear up any confusion anyone might have.


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Wordless Wednesday: Kitten Time

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Difficulty in Feeding a Baby with Down Syndrome

I received an email a couple days ago from a mother who is having difficulty getting her baby to breastfeed and take the bottle. My mom shared our experience in getting O to nurse here, but I thought I'd share a little more.

We had a very challenging time getting my brother, O, to eat in the early days. He was in the NICU for 2 weeks after he was born and had a gavage tube for much of that time. We finally had the NG tube taken out and my mom went into the NICU every 2 hours to breastfeed him. It was a lot of hard work, but he eventually caught on. Here’s a few thoughts, so hopefully some of this may help:

-Have you gotten in touch with a La Leche Leauge consultant? They have all sorts of tips and info on breastfeeding a baby who is having a difficult time. They helped us A LOT with Osiyyah!

-Have you tried using Nipple Shields? I know it sounds funny, but they help a lot of moms who have babies with a difficult time breastfeeding. You can order them online and a La Leche League consultant should have some or know where to get some.

-Have you tried using a SNS - Supplemental Nursing System? It’s a bottle that has a small tube coming out of it. You put your milk or formula (my mom pumped and used her milk) in it and then tape the tube next to your nipple. So, when your baby is nursing, she will be getting whatever she can from you, but also getting extra from the SNS. It doesn’t come out real fast, so it shouldn’t choke her. You can also use the SNS on your finger or pacifier for her to just suck on.

-Have you tried the Haberman (SpecialNeeds) Feeder? This is used for babies who have difficulty with bottles and nursing. 

-How do you hold her when you breastfeed her or bottle feed her? When my mom breastfed O she would have him in almost a 90 degree sitting angle. It seemed to help him get more down, easier and it wouldn’t drip out of his mouth.





-My mom also would have O's twin sister, Y, nurse until she had a let-down and then Y would get taken off and O would get put on. This milk is called the "hind milk", which is higher in nutrients anyways, but it was also easier for him to nurse because the milk was right there.


There's also a couple things to consider if you have a baby who doesn't want to nurse because they get tired quickly:

-How is the thyroid? A low thyroid (hypothyroidism) is very common in DS and it will cause sluggishness.

Does the baby have a heart condition at all? A heart condition will very often make a baby not want to eat much.

I know it’s very discouraging to see a baby who has little interest in nursing. I know it took a lot of work to get my brother going good on the breast. He had a bottle once, but we did not want him getting it much because we didn’t want him to get used to it. Once we did get him breastfeeding, he nursed until he was 2 years old.

Just keep trying and hopefully the baby will be able to do it well as you keep pushing her along!


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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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New Longvida Research & Survey

Ohio State University did a placebo controlled study on Longvida Curcumin recently. The results are encouraging, but it has raised some questions as to what dosage should be used. I will share more details of the study:

They saw an improvement in antioxidant function in the brain. The reduction in serum of Veg-F, which is a build up of red blood cells, but it is not a good thing, as it can lead to senility. There was also a decrease in beta-amyloid markers. All of these things lead to better brain health, so it is encouraging to see that LC works on a variety of levels.

You can see a video of a brief overview of the research here.

The name of the study is: Broad-spectrum anti-aging effects of low-dose curcumin (as Longvida®) in healthy human subjects.  The Ohio State University, 2011. Manuscript in development

I will share more information regarding the study once I am able to read the abstract and full text.

For us, we are not changing any dosages on Longvida Curcumin at the moment. We are keeping it at the 2000mg/day dosage.

Blake Ebersole from Verdue Sciences is hoping to be able to get a placebo study done on individuals with DS who take Longvida. In light of that, he has put together a short survey for people to fill out to see how much interest there is in this.

The study link is: https://www.surveymonkey.com/s/Q67PJBC




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Study shows Low Melatonin in children with Down Syndrome

I thought this was an interesting study. I will bold the most important parts, so you don't have to read through it all to see the conclusion.

Although we do not, a lot of people supplement extra Melatonin to their children with DS to help with sleep. This study is interesting in light of that, as a lot of people with DS respond really well to Melatonin. I guess you could get two birds with one stone with this - help with sleep and help reduce oxidative stress.

J Pediatr Endocrinol Metab. 2010 Mar;23(3):277-82.
Melatonin and elimination of kynurenines in children with Down's syndrome.
Uberos J, Romero J, Molina-Carballo A, Muñoz-Hoyos A.
Source

Departamento de Pediatría, Facultad de Medicina, Universidad Granada, Granada, Spain. uberosfernandez@terra.es

Abstract

BACKGROUND:
Heightened activity of superoxide dimutase is an effect derived from the gene dose in the trisomy of Down's syndrome (DS), and has been related to the increased production of hydrogen peroxide and with greater lipid peroxidation. Many of the degenerative changes observed in patients with DS have been associated with the pathological effects of free radicals, and for this reason it is of interest to determine the levels present in these patients of powerful antioxidant molecules such as melatonin, and of metabolites with important neuroprotector and neurotoxic consequences such as those derived from the kynurenine pathway.

PATIENTS AND METHODS:
A study was made of 15 children with DS, together with a control group of 15 non-DS children, matched for age and sex, examined at the Hospital Costa del Sol, Marbella, Spain. Serum melatonin and serotonin were analyzed by RIA; urinary tryptophan metabolites (kynurenine pathway) were determined during periods of light and darkness (09.00-21.00 h and 21.00-9.00 h) by thin-layer chromatography.

RESULTS:
The mean values of serotonin and melatonin were found to be lower in the patients with DS, although the level of nocturnal secretion of melatonin was higher. Urinary excretion of kynurenine was lower in the patients with DS, although greater quantities of kynurenic acid and anthranilic acid were excreted.

CONCLUSIONS:
Patients with DS present levels of plasma melatonin and urinary kynurenine that are lower than the corresponding levels in the control population, together with higher values of kynurenic acid and anthranilic acid. These circumstances constitute an added risk to these patients of damage by free radicals.



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