Monday, July 23, 2007

Another mark against MSB+!!

I was looking at MSB+ for some folks who asked about, and thought I'd put the info up on here too -

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I can give further information if you have anymore questions :).
MSB+ -

Their formula contains Iron, L-Cysteine, and Phosphotidylserine.
Iron should not be supplemented unless it is needed, because it aids in the pro-oxidative state.

Cysteine is already in overabundance in individuals with DS, due to the improper functioning of the SAM cycle. Extra cysteine should not be supplemented.

Serine is typically high in individuals with DS and there is already Serine in the formula. There is no need for phosphatidylserine.

Plus, I don't like the fact that it has Sucralose in it, but that's not a big deal, it's just something we don't care for.

NTV-D -
It has a few more ingredients in it than the MSB+. I also like it better, because they seem to research out the ingredients more than Nutrichem does. To name a few of the several ingredients which are in NTV, which are not in MSB:

Curcumin *anti-oxidant, anti-inflammatory, helps remove beta-amyloid plaque build-up.
Blueberry Powder *great anti-oxidant and anti-cancer
Lutein *good for eye health
Bromelain *excellent anti-inflammatory properties

Plus, MSB doses based on age, not on weight, which is not as accurate of dosing. Pretty much all of their ingredients in MSB are given at MUCH lower doses than NTV. NTV doses based on weight and age. I was amazed at how low their doses were.

For some examples:
the amount of TMG in MSB that my brother (2 yrs old, about 30 lbs) would be supposed to get is 25 mgs. In NTV, he gets 150mgs. Plus, he takes 500mgs extra of TMG anyways!
the amount of zinc in MSB that my brother would be supposed to get is 3.75mgs. In NTV, he gets 9 mgs. Plus, he takes a bit extra.

That is a HUGE difference. Just another "nail in the coffin" for me on not using MSB+!

Friday, July 20, 2007

How we dealt with teeth problems - cavities



We have recently had to deal with some cavities in my brother's teeth (he's 29 mths old). I thought I'd post what we did in case it can help others.

My brother has had some recent teeth problems (cavities - the teeth came in bad) that we have had to deal with, so this is what we've done.

I don't know
if you guys remember or not, but a few months ago I posted asking about different dental questions and ways to naturally take care of a cavity. We also asked my brother's doctor if there were any precautions or things we should be aware of when he had dental work done. Well, it took us about 4 months to FINALLY get into a doctors office who would see my brother. The dental office that we have (which is covered by our insurance) won't see my brother (because he's 2 and he has DS). So, I called all the different pediatric dentists and no one would consider seeing him because of his DS. One office said they would send him down to USC hospital to have these cavities filled. Another office wouldn't let us come back into the room with him (uh, he's 2, he would freak out if one of us wasn't with him!). We called with specific things we wanted done - we did NOT want him to have to be put under (he has never had to be put under, and we didn't want to have to do that now), and we had to be back in the room (so we could hold him!). I finally found one office who would consider seeing him on our stipulations.

This dentist is an older man and has been a
dentist for a long time. He has worked with a good amount of individuals with DS. He was telling us about different patients he had with DS and such. He is a really cool and easy going doctor. He had my mom hold my brother on her lap and the doc just leaned him back into his lap and looked at his mouth to see the teeth that had problems. We had wanted the teeth pulled, but then he said that wouldn't be good since it would mess up with the spacing in his mouth (he is missing two of the front teeth [the 3rd from the middle tooth on each side] anyways). So, he said he could put caps on his teeth that had the cavities.

What he does when he does the work is he puts the baby in what they call a
"baby papoose." It is basically a restraint that they lay the baby in and they can't move. He does good work and he works really fast. My brother had a cavity on the first molar on his top on each side. He does one side at a time. My brother had his first side done a few weeks ago and is due to have the other side done the end of the month. It was nice to finally have a dentist who was so calm, laid back and did quick and good work. This dentist doesn't take our insurance, but it is well worth it to finally get his teeth taken care of!

It's been such a hassle finding a dentist.
One thing the dentist said is, he uses the papoose while they are little, as he doesn't like to have to put them under either. Once their older, there's no putting them in the papoose. He makes friends with them as they get older and normally they end up being okay to work with.

~~ New Look :) ~~

I decided to change the design of the site today. I didn't like how the other one looked and I thought it was a little confusing to navigate. So, I changed the layout completely. I think it is much cuter and easier to navigate. Hope it has made a difference for others :).

Check it out here ~ www.gotdownsyndrome.net

Another Straw Cup!

We found another straw cup that is great for OMT. The straw is the kind that you can cut to make it shorter (see the post I did a few months ago on that :)). Information of this cup is below:

Gerber Graduates Cool Twisties Easy-Twist Insulated Straw Cup

It can be found online at drugstore.com.




Thursday, July 19, 2007

Human Genome Project

I have seen things on the Human Genome Project in research I have done. But, in my Biology class through UC Berkeley, it was talked about again. So, I decided to look at it some more. There are so many sites on HGP. I thought I'd post some that look like they will come in handy at times:

Gene Cards ~ Can search for any gene and it will give loads of information!

Gene Gateway ~ TONS of information! Haven't even looked at it all yet.

Chromosome Viewer ~ Can click on each chromosome to see what diseases and syndromes have been linked to that chromosome.

That's all for now!

Beta-Amyloid Peptide & increased risk of Alzheimer's Disease

It is known that there is an overexpression of the Abeta42 in DS. It is also believed that Abeta42 is an important role in the development of Alzheimer's Disease (AD). The study below shows partly why individuals with DS can be at an elevated risk of developing AD.

Arch Neurol. 2007 Jul;64(7):1007-13.

Elevated Plasma beta-Amyloid Peptide Abeta42 Levels, Incident Dementia, and Mortality in Down Syndrome.

Taub Institute for Research on Alzheimer's Disease and the Aging Brain, PO Box 16, 630 W 168th St, New York, NY 10032. ns24@columbia.edu.

BACKGROUND: Deposition of the beta-amyloid peptide Abeta(42) is thought to be an important initial step in the pathogenesis of Alzheimer disease (AD). Individuals with Down syndrome have increased levels of beta-amyloid peptides and an increased risk for AD. OBJECTIVE: To examine the relation of plasma levels of Abeta(42) and Abeta(40) to the risk of dementia in nondemented participants and all-cause mortality in adults with Down syndrome. DESIGN: Prospective, community-based longitudinal cohort study. SETTING: State and voluntary service providers in New York State. PARTICIPANTS: Adults with Down syndrome (N = 204). Main Outcome Measure Plasma Abeta(42) and Abeta(40) levels were measured at initial examination. Participants were assessed for cognitive and functional abilities, behavioral/psychiatric conditions, and health and vital status at 14- to 18-month intervals for 4 cycles of data collection. RESULTS: Among participants who were nondemented at baseline, those in the middle and highest tertiles of plasma Abeta(42) levels were more than 2 times as likely to develop AD as those in the lowest tertile. Compared with participants without AD, participants with prevalent AD had higher levels of plasma Abeta(42) but not Abeta(40). Among all participants, those in the highest tertile of plasma Abeta(42) level at baseline were more than twice as likely to die during the study period as those in the lowest tertile, whereas there was no difference in risk of death between those in the middle and lowest tertiles of plasma Abeta(42) level. CONCLUSION: Elevations in plasma Abeta(42) peptide levels are associated with earlier onset of AD and increased risk of death.

PMID: 17620492 [PubMed - in process]

Monday, July 16, 2007

AmEx - Awareness Can Build A Family - Voting Part 3

This was posted on another listserv and I thought I'd put it up here.


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Hello All,
The voting closed today for the Member's Project and we ended up in 5th place...behind giving the government the money to refurbish our national parks, and behind plant a million trees around the world...we were also behind Alzheimer's research...which our kids are KEY to that research, and behind clean drinking water for kids in Africa...
Tuesday, July 17th the top 25 will be back up and the voting begins again...I'm heading out on a business trip and won't be here to bug you on Tuesday, so this is your prompt VOTE AGAIN AND FORWARD TO EVERYBODY!!!!
This round we HAVE To end up in the top 5 to make it to the next round.
If you haven't been there lately, there is a statement from the NDSC and a lot of ignorant posts encouraging people to not vote for us...ignore the ignorance, don't play to them, simply post your reasons for wanting this project if you even feel compelled to do that.
Here's the link and this round ends next Sunday
THANKS!!!!!!

You will find a description of our project below.

If, after reading the description, you agree this project is worthwhile you can help in 2 ways:

1. If you are an American Express card member – Go on line to

http://www.membersproject.com/intro.htm and following the instruction to vote for the NDSC project titled: Awareness Can Build a Family

2. You can help us even more by forwarding this email to all the people on your contact list – to other family members, friends and associates. Send it to everybody you think might care about people with Down syndrome and ask them to vote for Awareness Can Build a Family.

With your help, we can mobilize thousands of people and, in the end, gain essential funding for our campaign to make the world aware that people with Down syndrome are “more alike than different.”

That is the theme of our campaign and here’s the way it is described with American Express:

Awareness Can Build a Family

Yearly, thousands of women are tested to determine if the child they carry has Down syndrome. A positive answer often portrays a bleak future in which their child will impose terrible burdens and dreams die.

Many medical professionals have scant knowledge of Down syndrome and are unable to comfort or educate.

Their messages tag people with Down syndrome as having no value, implying there is no place for them in our world.

The tragic result: an astonishing 90% of pregnancies involving diagnosis of Down syndrome are terminated.

In fact, there is much to celebrate. Children with Down syndrome excel in school, participating in sports and graduating. As adults they live independent, rewarding lives. Ask a parent – you will hear of joy, fulfillment.

Our Members Project, “Awareness Can Build a Family,” would use public service television, ads, booklets and more to tell that people with Down syndrome are more like all of us than not and are of priceless value.

If you agree with all of that, please vote as soon as possible – the seond round closes July 22, 2007!

Please go to: http://www.membersproject.com/intro.htm Click on Vote Now. Find Awareness Can Build A Family. Read it. And vote!

Together we can make build awareness. Thanks for your support!

Friday, July 6, 2007

Vitamin B12 and heart defects in infants



I found this interesting. While this is not the cause of heart defects in children with Down syndrome, I thought it was still of interest.

Vitamin B12 Prevents Heart Defects in Babies

By Jeremy Appleton, ND, CNS



Healthnotes Newswire (March 29, 2007)—Women whose diets are low in vitamin B12 around the time of conception are at higher risk of having babies with congenital heart defects, according to a new study. Worldwide, 1 million children are born with congenital heart defects each year, contributing to infant death and illness. The new research suggests that many of these cases are preventable.

“The mother serves as the environment of the child as the embryo forms,” said RĂ©gine Steegers-Theunissen, MD, PhD, of the Erasmus MC University Medical Center Rotterdam in the Netherlands and the study’s project leader. “Both genetic and environmental factors, such as nutrition and lifestyle, play important roles in the prevention or development of congenital heart defects.”

Previous studies have found that mothers of children born with cleft palate and neural tube defects get significantly lower amounts of B vitamins than do mothers of children without those defects. Other studies have demonstrated that supplementing with folic acid around the time of conception protects against congenital heart defects.

The Dutch HAVEN study is an ongoing study designed to identify environmental and genetic factors in congenital heart defect development. Using questionnaires, Dutch researchers calculated the dietary intake of B vitamins among 192 mothers of children with congenital heart defects and 216 mothers of children without the defects. Overall, low intake of vitamin B12 was associated with an increased risk of having a child with a congenital heart defects. The risk doubled in those with the lowest B12 intake. Women with low B12 levels also tended to have higher levels of homocysteine, a substance that raises the risk of heart disease and birth defects.

All mothers in the study also had a substantially lower intake of folic acid than the Recommended Dietary Allowance, which in the United States is 400 mcg per day (600 mcg per day during pregnancy). Both folic acid and vitamin B12 are needed to keep levels of homocysteine in the body low. Folic acid is a water-soluble B vitamin that occurs naturally in foods such as leafy green vegetables (like spinach), fruits (like citrus fruits and juices), beans, and peas.

Vitamin B12 is found in animal foods, such as dairy products, eggs, meat, poultry, and fish. Seaweed and tempeh also have small, but inconsistent. amounts. Most people do not require vitamin B12 supplements, though vegetarian protein sources may not provide enough vitamin B12, so vegetarians and vegans may want to supplement with 2 to 3 mcg per day.

“In this study we demonstrated for the first time that a low maternal dietary vitamin B12 intake is associated with an approximately twofold increased risk of having a baby with a congenital heart defect,” Dr. Steegers-Theunissen concluded. “Women who are planning a pregnancy should consume a diet rich in [folic acid] and vitamin B12, and if not possible should use a low-dose vitamin supplement containing both folic acid and vitamin B12.”

Wednesday, July 4, 2007

Down Syndrome Awareness - American Express Project

This was posted on the DownSyndromeInfoExchange listserv. Feel free to pass this on to anyone you know.

~~~~~~~~~~~~~~~~~~`
THIS IS IT!!!!

PLEASE VOTE!!! This is so huge I need all of you who have American Express Cards to take a few seconds, and it is only a few seconds to log on and vote ASAP!!!!
AND FORWARD TO YOUR FRIENDS TOO!!!!!
Thank you!!!!
Sandra

Dear Friends,

The National Down Syndrome Congress (NDSC) has an exciting opportunity and you can help us secure it to the benefit of all people with Down syndrome and their families.

We have been notified that an NDSC initiative has been named one of 50 finalists as an American Express Members Project. (NDSC/DSAOC member Sandra McElwee approached the NDSC about the project; NDSC Board member David Forney wrote the successful entry). You may have seen commercials on TV.

If we succeed in the selection process, we may be awarded up to $5 million to promote Down syndrome awareness.

To get to that, our project must make its way through three rounds of voting by American Express Card Members.

The first round begins today, July 3.

You will find a description of our project below.

If, after reading the description, you agree this project is worthwhile you can help in 2 ways:

1. If you are an American Express card member – Go on line to

http://www.membersproject.com/intro.htm and following the instruction to vote for the NDSC project titled: Awareness Can Build a Family

2. You can help us even more by forwarding this email to all the people on your contact list – to other family members, friends and associates. Send it to everybody you think might care about people with Down syndrome and ask them to vote for Awareness Can Build a Family.

With your help, we can mobilize thousands of people and, in the end, gain essential funding for our campaign to make the world aware that people with Down syndrome are “more alike than different.”

That is the theme of our campaign and here’s the way it is described with American Express:

Awareness Can Build a Family

Yearly, thousands of women are tested to determine if the child they carry has Down syndrome. A positive answer often portrays a bleak future in which their child will impose terrible burdens and dreams die.

Many medical professionals have scant knowledge of Down syndrome and are unable to comfort or educate.

Their messages tag people with Down syndrome as having no value, implying there is no place for them in our world.

The tragic result: an astonishing 90% of pregnancies involving diagnosis of Down syndrome are terminated.

In fact, there is much to celebrate. Children with Down syndrome excel in school, participating in sports and graduating. As adults they live independent, rewarding lives. Ask a parent – you will hear of joy, fulfillment.

Our Members Project, “Awareness Can Build a Family,” would use public service television, ads, booklets and more to tell that people with Down syndrome are more like all of us than not and are of priceless value.

If you agree with all of that, please vote as soon as possible – the first round closes July 15, 2007!

Please go to: http://www.membersproject.com/intro.htm Click on Vote Now. Find Awareness Can Build A Family. Read it. And vote!

Together we can make build awareness. Thanks for your support!

Best regards,

Kristi Golden

Program Director

Down Syndrome Association of Orange County

151Kalmus Drive, M-5

Costa Mesa, CA 92626

(714) 540-5794

kgolden@dsaoc.org

www.dsaoc.org

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