Jacob, a child with Down Syndrome, enjoying a family holiday and browsing in shops, like any other 5 year old child wouldJacob looking at books and watching TV at age 6 years - Down Syndrome doesn't stop normal development, but social attitudes do. - Jacob, a baby with Down Syndrome - Jacob at one year of age

Down Syndrome: The Reasoning for Using Vitamin Supplementation and how to make Down Syndrome Vitamin supplementation on the cheap.

In researching vitamins and Down Syndrome, you may come across the term “Targeted Nutrient Intervention”, or TNI.

Down Syndrome TNI is a special vitamin supplementation specifically prepared for those with Down Syndrome.

The discussion which follows is all about the specially formulated vitamin supplements for treating Down Syndrome. We are NOT talking about the common ordinary vitamin supplements purchased in shops as a treatment for Down Syndrome, though we will tell you how to prepare a more inexpensive targeted nutrient intervention, using common vitamins and so on.

WARNING!

Current research is now showing that Vitamin A and Vitamin E and others may shorten your life! Vitamin formula’s for Down Syndrome often have high levels of vitamin A, so be warned.

CONTENTS of this page of Vitamin treatment for those with Down Syndrome:

  • 1…The BLOB stage in Down Syndrome – is there a place for the use Vitamins and herbs as an alternative medicine for treating Down Syndrome?
  • 2… Infertility and Vitamins in those with Down Syndrome ;
  • 3… In Down Syndrome, do vitamins appear to improve Health?;
  • 4… Dr. Leichtman’s Albany, Ky. seminar, April, 1999: His medical Opinions on Vitamins and Down Syndrome, for Discussion;
  • 5… BIOCHEMICAL BASIS of Vitamins in treating Down Syndrome;
  • 6… Some Negatives of using Vitamins in Down Syndrome;
  • 7… Down Syndrome therapy: Some of the Costs and Considerations, especially for Vitamins ;
  • 8… DOING VITAMINS SUPPLEMENTATION ON THE CHEAP FOR THOSE WITH DOWN SYNDROME.

1…The BLOB stage in Down Syndrome – is there a place for the use Vitamins and herbs as an alternative medicine for the treatment of Down Syndrome?

An important point about vitamins and or alternative medicines on development in those with Down Syndrome:

Whether you use vitamins or alternative medicines or alternative treatments or not in treating your Down Syndrome baby, babies with Down Syndrome can develop in bursts. At some point you may feel that your baby is turning into a blob, often around 4 to 8 months of age, only to find several weeks/months later that he has significantly improved.

Jacob turned into a blob at one point, it was a very depressing time for us – we were so relieved when his development burst forward.

Jacob had been on Vitamins almost from birth, but the nutrients provided in the Nutrivene formula failed to prevent the blob stage.

Well, that was written about two years ago. Jacob appears to be delayed. One observation that may be helpful is the use of fish oil, flax oil, vitamins and so on if the ‘blob’ stage shows itself.

One parent found her kid with Down Syndrome responded so quickly to the vitamins and oils that it appears more than coincidence. Here’s Alice’s recollection and the vitamins and oils she used to fight the Down Syndrome with:

“…When I said Jack “crashed” I meant that he was in a downward spiral and to me he seemed about ready to bottom out … But after 7/8 weeks [of Age,] the developement seemed to slow. … by 4 1/2 months his eyes were shivering constantly out of control to the point where his little head shook…And the sweet boy we had started to connect with was disappearing. He was just a lump [blob]. He had stopped trying to crawl. He was not responsive. He was very droopy. I was very scared. I had been researching online and had read about TNI [vitamins for Down Syndrome] and other treatments…. but… there was no doctor for us to turn to so I started giving Jack an oil [and vitamin] mixture. At the time I included Flax Oil which I stopped later since it spoils on the shelf and could be harmful since it’s ransid then.

So what he gets now is this – DAILY….. these are approx. amounts but near exact…

1,150 mg. Evening Primrose oil

200 I.U. Vitamin E (natural d-alpha) not dl-alpha

80 mg. EPA (from Fish Oil)

210 DHA (from Fish Oil)[EPA and DHA is normally supplemented via fish oil – assuming the person is not allergic etc to it. However, the latest from the American Heat Association, tells us that an adult should not consume more than three grams of fish oil a day, as excessive bleeding may result. This means that a one gram capsule (pretty much the standard size), would be theoretically the correct dose for a four year old. One quarter of a capsule for a one year old. Be aware of this and I suggest you consult your doctor before going to a higher dosage.]

6 mg. Lutein

15 mg. CO Q10

23 mcg. Selenium (is included with the CO Q10 we buy from NOW Brand)[PLEASE NOTE, THIS SELENIUM DOSE APPEARS WAY TOO HIGH AND MIGHT CAUSE SIGNIFICANT DAMAGE TO A kid with Down Syndrome, 1 to 2 mcg per year of age for a kid may be more appropriate. However, UNLESS the DOCTOR affirms it a good idea, MY FEELING IS TO NOT TO SUPPLEMENT WITH SELENIUM. We do supplement Jacob – 5 years old – with selenium, but the dose is only 8 mcg and Jacob was found through blood tests to be selenium deficient at one point].

400 I.U. Vitamin A (from Cod Liver Oil)

45 I.U. Vitamin D (from Cod Liver Oil)

8,000 I.U. Beta Carotene, [a vitamin] and

sometimes 140 mg. Milk Thistle

…Here’s the thing…. if you put any of this on the web…. I’d need a big disclaimer. I just know …[the vitamins and oils] helped Jack. After one day we could see great improvement and on the 2nd day…. his nystagmus [eye shivers] was back the way it had been before. His mind was back and he was our little sweetie again. He started holding his head up for the first time well on that second day. And he soon was clamoring after toys. The skin on the sides of his feet had large patches of flat, thick brownish area that felt really rough compared to the baby soft skin you’d expect. But after 5 weeks on the oils a dramatic improvement could be seen. And the rough patches that were beginning on his knees have since disappeared. “

I, like Alice, cannot claim that the above vitamin and oil formula will work or be safe for your kid with Down Syndrome – but I wish I had had the opportunity to use this alternative medicine like treatment with Jacob when the blob stage hit him.

 

Some Years further on and opinions of this blob stage and vitamin intervention and supplementation seem to be altering

FROM ALICE, JACK’S MUM

Hello Donald….

We haven’t talked in a long while. I’m in … in the U.S.. My son Jack is mentioned on this page of yours….

http://www.cdadc.com/ds/tni.htm

I thought I had updated you but I must not have. My husband and I discovered after Jack had his 12 mos. vaccines that he had been reacting to vaccines all along but we had missed it as it was blended in with DS issues.

The “BLOB” stage was actually a vaccine reaction which could explain why he reacted so quickly to supplementation after that as healthy fats can help heal the brain and Jack’s brain had been hurt by the vaccine toxins.

We had Jack tested genetically by this group www.holistichealth.com and it turns out he doesn’t clear toxins well. So that explains the vaccine reactions I think. We haven’t let him have any vaccines since the 12 mos. ones and he has had no more major downturns.

After the 12 mos. vaccines he caught the measles FROM the mmr and barely survived the lung infection. Thankfully a Christian neuro. dev. friend online told me about high dose vitamin A which I researched and it saved him in the nick of time. That lung infection is a dilly. After he started to recover we started noticing alot of changes in Jack. Here is his last major downturn…. he went into autism. It took several weeks but he started hand-flapping, twirling things, he wouldn’t look us in the eye any more, he stopped talking (he had started to talk a bit just before the vaccines!!!) and then he started head-banging. It was a nightmare.

I don’t have time right now to go into more detail…. he has gradually come back out partway. :)

We still use alot of supps to fight the DS. And we use supps and more to help clear the vaccine toxins.

Here is a site you might find interesting. Several people on my Einstein DS list are doing this protocol…..

http://www.changingmindsfoundation.com/

We do give our Jack gingko [Dear reader, the research behind the use of certain gingko active ingredients is sound, but Gingko active ingredients can have dangerous consequences on the human brain and researchers have clearly stated not to use it until they have been able to iron the dangers of it] but we haven’t done the Prozac. Dr. Cody is on our list. She’s very bright and informative.

Please correct the info. on Jack at your site when you have time. Thanks so much.

I hope you and your family are well. God bless you. Ali :)

 

FROM DONALD, JACOB’S DAD

Hi,

I’m sorry to hear about the autism part – it is one of the most iffy side effects of vaccines, which is why we mention about boosting the vit A etc before vaccines in children with DS, but it is far from proven and it may pay to look further than vaccines I think.

It isn’t easy being a parent, especially when your child keeps getting sick. Doctors only seem to help so much then seem, well, not very helpful is good way of describing them.

We have gone the opposite way to you. We believe that adding specialised and concentrated nutrients may be the dangerous thing, the thing that may be harmful, unless blood tests show a deficiency.

Then on top of that, we have all the other disabilities that come with Down Syndrome, but yet the disabilities are different from person to person, and each disability requires it’s own specialised treatment.

What I’m tending to think about the blob stage, is that it is a reaction to parental depression and emotions that the child may be picking up on.

The children pick up after the supplements because the parents get a boost from doing something, which changes the attitudes and emotions of the parents from desperation to action. This is pure conjecture on my part, but I’m starting to see things differently now that, all that, is so many years behind me.

Scientific research has shown that at least some of the speech delay in children with DS is due to the depression of the child’s father, and I was certainly depressed for a long time.

DS is very confusing, none of us really knows what it is – so many interactions, so many variables.

I am going to need to make changes to the web site, but I’m not sure how to go about that yet. I may use another page, or I may try rewriting the page you mention, but for now, I’ll just put your message and mine on the page, until something more definite comes along.

Thanks and I hope God blesses Jack and your family abundantly. May he be healed of the autism and autism symptoms.

Donald

 


2… Infertility and Vitamins in those with Down Syndrome

Just Another Dream – Infertility in Down Syndrome is related primarily to chronic zinc deficiency which can be treated quite effectively with vitamins and minerals.

A study by Dr. Anneren in Sweden will be reported in 2002, verifying that vitamins can allow our male kids to be fertile (females with Down Syndrome have normally been fertile).

GUESS WHAT, IT’S NOW 2004 AND THE STUDY CAN’T BE FOUND AND THERE’S NO PUBLICITY ABOUT ANY SUCH BREAKTHROUGH! Another pro-vitamin argument down the drain.


3… In Down Syndrome, do vitamins appear to improve Health?

Three different studies have found significant improvement in the health of those with Down Syndrome who take vitamins. The use of vitmains in Down Syndrome give rise to about 40% fewer doctor visits and 30% less antibiotic prescripitions. Also, significant decrease in the incidence of all infections and of upper respiratory and ear infections in particular has been found. Also, much improved growth has been found when treating young kids with Down Syndrome with vitamins. (Early Intervention in Down syndrome: The effect of antioxidants.[conducted with Nutrivene] Author: N.A. Meguid, et al. Human Genetics Department, National Research Centre, Tahir Sir, Dohki, Cairo, Egypt.; Targeted Nutritional Intervention ( TNI ) in children with Down’s syndrome Gelb, J.J. padiat. prax 59, 703-708 (2001) Hans Marseille Verlag GmbH Muchen and: the studies, as yet unpublished, by Dr. Lawrence Leichtman).

Since these studies made there way into vitamin newsletters and so on, further research has been conducted, with findings inconclusive. In other words, there does tend to be some improvement in those with Down Syndrome taking TNI vitamins and so on, but the improvement appears to be only marginal.  Still, it’s one of the best alternative medicines to anitbiotics we have for those with Down Syndrome.


4…Dr. Leichtman’s Albany, Ky. seminar, April, 1999: Some Interesting, Though Perhaps Now Out Dated and Now Questionable, Medical Opinions on TNI for Discussion:

Thank you to DSTNI and Priscilla Kendrick, Mom of 9 including Evan, 4 with Down Syndrome and SB, for providing the information that this section is based on and many of the words here are those of Priscilla.

Most of this information is about Down Syndrome vitamins and written for those who are new to the idea of their being Down Syndrome vitamin treatments.  This might not be totally accurate but I tried.  First Dr. Leichtman gave a little history of Down Syndrome vitamin treatment, starting with Dixie in 1993 experimenting with her kid with Down Syndrome, then testing her child and experimenting some more and “inventing” TNI – a type of Down Syndrome vitamin intervention.  Of course she did a lot of research into the vitmain needs of kids with Down Syndrome.

2.  In Down Syndrome there are 350 genes on the 21st chromosome and half of them are functional at birth and half are turned off.

3.  The neurotransmitters in Down Syndrome (he mentioned dopamine, seratonin, acetylcholine) are all abnormal.  There are 6 types of neuroreceptors.

4.  He told of the 1995 study of nerve cells in a culture – Down Syndrome and non-Down Syndrome cultures were placed into test tubes and the Down’s Syndrome ones died. However, when antioxidants were put in the test tube with the Down Syndrome cells, the Down Syndrome cells stayed alive and grew

5.  The Gene SOD-1 causes cells to die quickly

6.  The NDSC (National Down Syndrome Congress) was originally founded to support the work of Turkel (the original guy who tried vitamin therapy on Down Syndrome patients) until Frank Murphy (the current guy) became head of it.

7. Down Syndrome is a progressive syndrome.  Syndrome simply means a group of things that together.  A disease changes over time.  A syndrome is static or stays the same.  The most striking changes in Down’s Syndrome occur in the brain.  A Down Syndrome baby has same size brain as non Down Syndrome baby at birth.  By age 10 the kid with Down Syndrome has a 25% smaller volume brain than the non-Down Syndrome brain. Brain arborization is decreased.  This is the connections, synapses, etc.  In Down Syndrome it’s like someone pruned the branches.  Something is killing the connections – lots of kids with Down Syndrome do better younger than when they get older.  40% of Down Syndrome people show signs of Alzheimer’s by age 40.

8.  Dr. L says he has about 1150 Down Syndrome patients now.  He mentions 5 things that Down Syndrome vitamin intervention seems to have an effect on:  Growth, Health, Immune Function, Cognitive Enhancement, and it Intervenes in the long-term degeneration of the brain.

9. In something he called a Cohort Study they compared Down Syndrome vitamins with general purpose multivitamins.  He told specific numbers but I didn’t get it all down – they had 400 in the Down Syndrome vitamin group and 100 in the multivitamin group.  On growth 80% of the Down Syndrome vitamin group was greater than the 10 percentile.  Only 15% of the multivitamin group was greater than 10th percentile.  On upper respiratory infections (URI) none of the Down Syndrome vitamin group had more than 3 a year.  In the multivitamin group 35% had 3-6  URI’s per year, 35% had more than 6 a year and 30% had 1-3 a year. 

10.  Half of kids with Down Syndrome have persistent ear fluid – glue ear.  They have fewer ear infections with it than non Down Syndrome and antibiotics does no good whatsoever for ear fluid. He says no amount of antibiotics will cure it. He recommends tubes for fluid although he did tell us he didn’t think we should go that route a 4th time.

11.  On immune studies, the IGA is lower in non Down Syndrome vitamin patients as well as the WBC.  If the IGA is low there is much greater chance of infection.

12.  He says there are less cognitive delays in the Down Syndrome vitamin treatment group – gross motor skills, like walking, are somewhat better with Down Syndrome vitamin intervention, while fine motor skills are lots better with Down Syndrome vitamin intervention.

13.  Lipid peroxidation occurs at 4-6 months which makes the brain cells rigid.  He said Down Syndrome babies who start the Down Syndrome vitamin intervention before 4 months of age have 70% normal development.  Down Syndrome babies are healthier than siblings and parents if they are started early on the Down Syndrome vitamin treatment.  This was very interesting – Those Down Syndrome babies started prenatally on Down Syndrome vitamins have a normal body tone.

14.  In a study of 130 adults with Down’s Syndrome ages 17 to 63, the adults decline every single year and a brain MRI at age 40 is consistent with Alzheimer’s disease. What about starting on Down Syndrome vitamin treatment with adults with Down Syndrome?  Of 160 adults on Down Syndrome vitamin therapy, 60% improved in speech and behavior, 9 developed Alzheimer’s disease, 50% improved their social skills and 48 of 60 who had quit their jobs returned to them.  He says this is common as they get older – Down Syndrome adults quit their jobs.

15.  He says aniracetam is going to replace piracetam later this year. It is a 5th generation which means lower amounts are more effective. Piracetam is a 1st generation drug.  He recommends Aricept and Piracetam at the moment for those kids with Down Syndrome over 13 yrs. (I believe he is now recommending Exelon for some over the age of 9. –July ’01)

16.  He says restless sleep and flopping around in sleep are a part of Down Syndrome.

17.  Out of his 1150 patients only 20 have had to have their standardised dosages of Down Syndrome vitamins changed.

18.  Piracetam is a Nootropic which means drugs that act on the brain. It returns the fluidity of the lipid layer and increases acetylcholine receptors.  Lipid peroxidation causes neuron fatty acid fingers which should be sitting free to connect, making the brain cells rigid. This doesn’t allow normal flow of ions in and out of the cell.  Piracetam helps this.  Tagged PET scans find greatest activity (of piracetam, I think) in the corpus collosum. He says hyperactivity is about the only side effect of piracetam.  He says it is not a blood thinner.

19.  Sulfa (Bactrim, Septra, etc.) depletes zinc and folic acid and therefore is particularly bad for Down Syndrome patients.  They also of course need no additional iron unless blood tests show you’re anemic.  He recommends a CBC – complete blood count – blood test every 6 months and a yearly thyroid blood test check.

20.  He thinks it is best to avoid all milk products and says milk protein causes intestine to bleed.  Says goats milk is better.

21.  He says Early kidhood Intervention (ECI) is not enough developmental augmentation for our kids with Down Syndrome.  He recommended the Woodbine series of books – the ones something like Teaching kids With Down Syndrome Gross Motor Skills, then there’s another one on Teaching kids with Down Syndrome Reading and one on  Math and maybe more.

22.  I asked a question about why my son who had a “low normal” muscle tone at birth lost it all after heart surgery and his opinion was that “mini strokes” cause brain damage during open heart surgery which affects muscles making them lose their tone.–Due to problems with the heart-lung machine which used to do more damage – major strokes in the beginning.  He says there are still mini strokes from it.  The good news is that soon most ASD’s, VSD’s and PDA’s ( which Evan had one of each) will soon be done by heart catheterization and not open heart surgery.

There.  I’ve tried to be accurate but don’t depend on it for accuracy. I don’t say I agree with everything, just reporting what he said. Anyone can feel free to add or comment.


5… BIOCHEMICAL BASIS of Vitamins in treating Down Syndrome;

1…The extra chromosome in Down Syndrome has all it’s genes, but only about 150 of those genes are activeAll 300 odd genes are switched on, but in some cases, the genes are controlled by outside forces which keeps their operation in check.  However, in some cases there are no control mechanisms and they are operating at full blast, using up vitmins etc and excreting waste products and this is happening in every cell. How many cells in the human body? LOTS, a cell is a fraction of the size of an eye of a needle – If you know the average count, please let me know. I assume we would be talking billions in number in a body.

2…Extra vitamins and so on are required to offset those used up by those active extra genes and extra vitamins etc are required by the body to help get rid of the waste products produced by these extra genes.

3…Just eating more wont help, as you have to compensate for the vitamins even if the person isn’t hungry – ever tried making a baby eat/drink when they don’t want it? It doesn’t happen. Also, being overweight produces it’s own problems. Then you have to be a biochemist, organic chemist, dietician etc to work out what those extra foods would be and in what quantities to consume. Then you have to get this person – the one with Down Syndrome to agree to only eat those foods and in those quantities. Do you know that people seldom stick to diets, if they did, we wouldn’t have obesity in the general population. So don’t expect a person with Down Syndrome to be any different.

4…The following extracts are summaries of Down Syndrome vitamin informationthat is available to the general public if you knew where to look; personal identifying features have been reomoved. A special thank you to Ginger and DSTNI for providing the following information:

This discusses three of those 150 genes:

Folate metabolism is messed up in Down Syndrome.  Now that the genome has been mapped, Dr. David Patterson, who is now in charge of the NDSS research group, has said that there are 8 genes that relate to folate metabolism that he can defend academically, and 6 more that he highly suspects.  That’s a lotta genes!!  Dr. Jill (James) has further demonstrated that adding specific [ vitamins and ] nutrients to cultured Down Syndrome white blood cells normalizes their metabolism. [<Why is that so important? It’s those white blood cells that fight off germs, cancer etc, so it represents a significant improvement in health for those with Down Syndrome taking the extra nutrients.]

If anybody would like to read about this stuff in English, Dr. Jill suggested a book to me a few years back called “Methyl Magic” by Craig Cooney.  It isn’t specific to Down syndrome, but it gives a really nice laymans description of the folate and SAM cycles that Jill has just studied.

And here’s the Down Syndrome information on Homocysteine:

1: Am J Hum Genet 2001 Jul;69(1):88-95 Homocysteine metabolism in kids with down syndrome: in vitro modulation. Pogribna M, et al.

The researchers found that increased activity of CBS in kids with Down Syndrome alters homocysteine metabolism thereby compromising folate-dependent resynthesis of methionine. This then causes the “folate trap,” a functional folate deficiency that may further interfere with the metabolic functioning in those with Down Syndrome.

PMID: 11391481 [PubMed – in process]

And here’s some more Down Syndrome related metabolic information that relates to vitamins:

Author wishes to remain anonymous – slight modicfications in text to enhance readability.

Her question, in a nutshell was, “My (young) kid with Down Syndrome is rarely sick, and is developing well. I am thinking about using the vitamins, but most of what I hear is that people with sick kids find that they don’t get sick as often. How will using … [ Down Syndrome vitamins ] … benefit my kid?”

Response by anonymous author:

The things you mention – improvements in health and development – are not the only issues in the long-term health of kids with Down Syndrome. (They are extremely desirable effects, of course – don’t get me wrong! And I am NOT belittling them.) The real reason to give the vitamins is because that extra chromosome is producing chemicals that are slowly damaging your kid with Down Syndrome. In many kids with Down Syndrome, that shows up early as sickness. In other kids with Down Syndrome, it won’t show up until later. But it will show up… The vitamins counteract this “invisible” damage. Sometimes it is just so bad that it is visible very early on, and this is the basis for the stories you hear about sick kids being so much healthier once starting on Down Syndrome vitamins. The damage as I currently understand it happens because of 3 gene systems that you might have heard discussed … The first is a gene called SOD. This is for an enzyme that takes a free radical called superoxide, and converts it to hydrogen peroxide. Unfortunately, the enzyme for glutathione peroxidase, which takes hydrogen peroxide and converts it to oxygen and water, is not triplicated [in Down Syndrome, trisomy 21, the cause is an extra replication of chromosome 21, which means you have three instead of two Chromosome 21’s.]… so there is not enough of it to mop up all the excess peroxide in those with Down Syndrome. Hydrogen peroxide is very toxic to cells, and especially neurons. Antioxidants in the Down Syndrome vitamins help to mop up the extra free radicals including the superoxide as well as the hydrogen peroxide.

The second gene is called CBS. This one affects folic acid metabolism. If this is not corrected, then the mechanism for turning genes on and off (and a LOT of other functions in the body, including immunity) are not working properly. Not only that, but the other half of the folic acid cycle stops working as well, and DNA synthesis (the process of making new DNA so cells can divide) stops working well. Right now there is a scientist at the FDA (Dr. Jill James) who is doing research on this very issue in Down Syndrome…. Folic Acid, betaine, choline, vitamin B-6, vitamin B-12 and many of the amino acids work at various places in this cycle and the problems it causes downstream in the metabolism.

The last gene is called BAPP. This is the gene that makes amyloid protein, which (when it misbehaves) makes plaques in Alzheimer’s disease. People with Down Syndrome get Alzheimer’s disease with a much higher frequency than the normal population, and they also get it earlier. It is clear that oxidative stress contributes to the early onset Alzheimer’s disease, and there have been studies in rats that show that Vitamin C helps reduce amyloid plaques in rat brains. Vitamin C is in abundance in Down Syndrome vitamin supplements. Vitamin E also helps reduce oxidative stress in the brain tissue. (So does piracetam, but that is a separate decision. Consider the vitamins first, THEN you can move on to looking at Piracetam.)

So, that is why, in a nutshell, we give Down Syndrome vitamins to our kid. I can’t tell you specifically what the vitamins have done for her in terms of her health and development, because we investigated Down Syndrome vitamins while I was still pregnant with her. By the time she was born, we had decided that this was the best thing for her, and I wanted to stop the damage as soon as I could. While she was in-utero, my antioxidant system could bail her out, but once she was born, the damage started in earnest. She was started at 5 days, only because she was in the NICU for 4 days due to problems unrelated to her Down Syndrome – respiratory distress and a blood problem from the pregnancy – they expected her bilirubin to go sky high, so they had a bed with stage lights waiting for her the moment she appeared!!! I wish I had a dazzling before/after story for you, but I don’t – I have never known her NOT on the vitamins! The more medical literature I read on Down Syndrome, the less likely I ever will. I think the evidence for the benefits of Down Syndrome vitamins is very compelling.”


6… Some Negatives of using Vitamins in Down Syndrome;

So far there is little proven benefit in the use of Down Syndrome vitamins for those with Down Syndrome.

Simple studies, inexpensive studies, could and should have been undertaken to verify the claims for intellectual improvement in those with Down Syndrome. The only thing I can positively say, is that, in the opinion of one doctor espousing Down Syndrome vitamins, Down Syndrome vitamins boosting IQ; he also apparently has some support from physiotherapists and occupational therapists that work with his clients. You can see the problem one could have with bias in favour of the Down Syndrome vitamin supplement he is working with. His non-clarification regarding the IQ would seem to make his findings uncertain.

Further, are the alleged IQ gains the result of Down Syndrome vitamin treatment or the result of the blood workouts? By identifying the low levels of, for example iron, we have prevented significant declines in Jacob’s intellectual functioning by acting on the blood test results. After we raised the issue of the importance of iron, it was then incorporated into the recommended blood work outs by Dr. Leichtman. If all kids with Down Syndrome go through similar threats to their IQ as Jacob, then blood work outs may be far superior – and less costly by far – than the Down Syndrome vitamins for maintaining higher IQ functioning.

I have also heard an argument from those espousing Down Syndrome vitamins, that people with Down Syndrome shouldn’t be tested with IQ tests, because they don’t believe IQ tests measure their intelligence. I feel this is just poppy cock – nonsense. IQ tests were purposefully designed from the out set, 100 years ago, to identify those people who would not perform as well in the education system. IQ tests have come along way since those days. There are culture free IQ tests, timed and untimed IQ tests, short IQ tests of a few minutes to long IQ tests spanning two or more hours. All show that those with Down Syndrome have lower than expected IQ’s. Think about it, if it were any other way, if any particiular type of IQ test showed any different, it would have been the mostly widely heard about finding – I have heard nought. I suspect the argument is more a smoke screen to divert one’s attention from the IQ controversy. It is , however, also possible that because these people just don’t understand the brain the way a psychologist does, that they are jumping to the wrong conclusion – perhaps they see people with Down Syndrome solving problems somewhat differently to the norm and perceive this as higher IQ – it isn’t; all it means is that the brain structure of the person with Down Syndrome is different to most, which means they will more likely have thoughts and associations that are different. A different way of thinking about things alters nothing about the IQ test which has been designed to measure problem solving – the answers are either right or wrong; the number right determines the IQ score.

For a 25 point IQ gain we thought the Down Syndrome vitamins were worth it, but now that the gains have failed to appear, we are ourselves wondering about the value of standardised vitamin therapy as a Down Syndrome treatment.

Also, at the time of using the Down Syndrome vitamins from the Nutrivene company, it was obvious that it missed supplementing some crucial minerals needed for good brain development, minerals that were routinely included in many over the counter multivitamin tablets. I found this quite disappointing when I realised the brain nutrients that they were leaving out.

Claims that it is able to prevent sterility in males with Down Syndrome appears unfounded, besides zinc is an inexpensive nutrient and presumably would achieve a similar result as the much more expensive Down Syndrome vitamin intervention.

Although the Down Syndrome vitamin intervention has many, many vitamins and minerals, people tend to think that because they are giving it and the kid is consuming it, that the kid is getting the benefit of all those nutrients. You have to remember though, that the body will just urinate out most vitamins and minerals it doesn’t need that day, so you could be flushing alot of money down the toilet. In some societies, uninfected urine is considered a food/medicine source because of it’s concentrated vitamins and minerals. Some nutrients if taken in excess can lead to toxicity problems, but the pro Down Syndrome vitamin people say the concentrations are adequate for most people without toxicity occuring.

The reduction in the use of antibiotics by about 30% is an important consideration when considering Down Syndrome vitamin supplementation – but would reducing the doctor visits from say five to three and a half warrant the expense of several thousand dollars (Australian) per year on the vitamins for Down Syndrome?

For most people, Down Syndrome vitamins is alot of money to have to keep dipping into one’s pockets for year in year out. In twenty years you could spend around $100,000 Aus – Are the gains your kid with Down Syndrome makes worth your kid losing that much of his inheritance?

There are lots of tough questions for a parent to have to deal with when looking at vitamin supplementation for those with Down Syndrome.


7… Down Syndrome therapy: Some of the Costs and Considerations, especially for Down Syndrome Vitamin Supplementation

What price do you place on allowing a Down Syndrome baby every opportunity to reach it’s greatest possible potential? As a parent, I say all we can plus more. There is nothing more important. Your baby, my baby, may become the presidents and prime ministers of tomorrow.

Down Syndrome vitamins and alternative medicines cost money - a cost that should be shared by the greater society in which they are to live.If you allow about $600 Australian per year of age, you have a very, very crude estimation for the metabolic therapy – the American Down Syndrome Vitamin intervention called ” Daily Formula ” costs around $1,000 per kilo. Piracetam and fish oil: About $150 per year of age. Day care: In Australia, between $150 and $1500 per year – depending on whether you can gain special consideration for fees or not. Then there’s the price of the toys that are most suitable, this would add around $300 per year above that of normal toy purchases. Efalex around $100 per year. So a three year old would cost around $600×3 + $150×3 + between $150 and $1500 + $300 + $100 = $2700 to $4050 approximately. At age 5 years, the day care cost falls out as they start school, the cost is then approximately $4150. Eventually the Down Syndrome vitamin therapy upper dosage limit etc is reached when the kid weighs around 45kg, at this point the cost is around $3000 for the Down Syndrome vitamins per year. So a 45+kg kid or adult costs $3000 plus the piracetam etc. So an upper limit in the vicinity of $5000 would likely apply – assuming current exchange rates don’t worsen and the inflation remains very low.

When we first started, we thought the Down Syndrome vitamins would cost so much more, but kids with Down Syndrome typically grow shorter and are of lower weight, so the quantity of medication used, doesn’t increase as much with age as we thought. Remember, the earlier Down Syndrome vitamin intervention is started, the better the result is suppose to be and the cheaper it is to get started.

Also, if the cost is too much of a burden, you could leave out some or all of the day care bit – daycare without the Down Syndrome vitamin therapy wont achieve anything much as far as I know, but the Down Syndrome vitamins may help and you can probably afford some amount of daycare per week to help at least partly enrich the neural interconnectedness in the brain. It’s a tradeoff, one that I don’t like, so try not to make it unless you have too.

In the end, however, you have to decide for yourself what is going to work for your kid, you may even decide that none of what Carolyn and I are doing is going to be of any benefit and reject the whole lot – that’s the bench mark of democracy. I wouldn’t agree with that decision, but it is your right.

Is this alot of money to pay out? As a parent, I say it isn’t, even if it means going without. As a member of a community of around 25,000 souls, I see our local hospital running a fund drive to raise $800,000 to put in one therapeutic swimming pool. The income of one doctor in one year would generally pay for the therapy of our town’s individuals with Down Syndrome for one full year. The number of persons with Down Syndrome in a town of 25,000, would be around 30. One operation and recovery in a hospital could easily cost the same. Keeping one person in prison for one year could keep 6 to 18 persons with Down Syndrome Down Syndrome vitamin treatment for one year. Society has accepted it has a responsibility to protect it’s kids, why dismiss the metabolic and stimulation needs of it’s kids with Down Syndrome?


8… DOING VITAMINS SUPPLEMENTATION ON THE CHEAP FOR THOSE WITH DOWN SYNDROME.

Find a good multivitamin pill. Once selected, we then check each of the ingredients to see if there are any potentially toxic ones, such as selenium, vitamin A, Vitamin E… We divide the daily adult recommended dose of the vitamin pill by 12 (as 12 years is considered the mininimum age for adult dosage for most things(NOTE: Some substances are not recommended for kids and should be avoided unless medical doctor OK’s it.)), we then multiply by his age in years, to find out the portion of the adult dose he is to take. We then make sure that Jacob’s portion does not contain an amount of any vitamin or nutrient that would be toxic.

At age five years we stopped the specialised Down Syndrome vitamins and decided just to do it on the cheap. We currently use (23-12-2004) Nature’s Own Peak Performance multivitamin tablet. Jacob takes about 1/2 of a tablet. We made sure that Jacob’s portion does not contain an amount of any nutrient that would be toxic. We use one teaspoon of efalex daily – irrespective of age. As well, we give horseradish and garlic to help control upper respiratory infection. The portion of the tablet he is to take each day, we cut off by using a pill cutter and then we crush the portion by using a pill crusher. We then mix it into his Wheet Bix with milk. Jacob prefers it as a savoury breakfast (no sugar).

So, there you go. May not be as fancy as the specialised vitamin formulas for Down Syndrome, but we think it’s good enough. SPECIAL NOTE: We recently had Jacob’s immune system checked out through blood testing and he was found to be perfectly normal in this regard. His multitude of upper respiratory infections are apparently quite common for kids of his age when mixing with other kids of his age. The real problem is more the glue ear that frequently results from the upper respiratory infections.

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