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(Health) Vitamin K: Toddler with rare disease

 
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adedios
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Joined: 06 Jul 2005
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Location: Angel C. de Dios

PostPosted: Thu Jan 05, 2006 8:31 pm    Post subject: (Health) Vitamin K: Toddler with rare disease Reply with quote






Toddler with rare disease finds treatment overseas
Tuesday, December 20, 2005
By Rachael Recker
The Grand Rapids Press

GRAND RAPIDS -- Tara and Mike Manciu did what many parents do when they were told their child has a disease with no clear treatment or cure.

They kept looking.

"We couldn't really accept that," said Tara Manciu, of learning the only treatment in the United States for Zellweger Syndrome, which their son Maximus had been diagnosed with, was a special diet -- and it wouldn't stop the disease from killing him. "We just wanted to see if there was a possibility that there was anything else."

Born March 2, 2003, Max was diagnosed with Zellweger Syndrome seven months after birth. The diagnosis, made by the Mayo Clinic, was sought after the Mancius observed problems with their firstborn's eyes. His failing eyesight, combined with his liver being unable to produce normal amounts of vitamin K to clot blood, led to the diagnosis.

About one in 50,000 babies is born with Zellweger Syndrome. It results in stunted growth, blindness, hearing loss and brain injury.

The Grand Rapids couple learned Dr. Gerald V. Raymond, of Johns Hopkins and Kennedy Krieger Institute, was considered the main authority in the United states on their son's disease. He relies solely on diet to help patients.

"But that doesn't really solve anything," Tara Manciu said of the diet treatment -- the patients always died.

Even though Raymond is staunchly critical of the successes of alternative treatments, the Mancius began looking for them.

Internet research led the couple to Dr. Manuela Martinez, a researcher and pediatrician from Spain and founder of the Manuela Martinez Foundation for Children with Metabolic Diseases. Max became one of 30 metabolic disorder cases worldwide Martinez treats.

The family took its first Spain trip in July last year. They visited Martinez's clinic in Barcelona and Martinez obtained her country's permission to treat Max. After the initial, weeklong tests followed by a few weeks of treatment, the Mancius saw "amazing results."

"When we went, he was about 15 months old and he was still only drinking milk," Tara Manciu said. "He would eat very little baby food -- maybe a jar a day. And he wasn't crawling, no walking. He definitely couldn't see."

Three to four weeks after treatments, Max was eating five to six jars of baby food daily and began scooting, exploring and tracking objects with his eyes.

Martinez's therapy uses DHA drugs in their purest form -- which produce no side affects, according to Tara Manciu. For Max, it consists of one dose of DHA/EE daily delivered frozen from Spain and one dose of vitamin K to keep his brain from hemorrhaging.

Dr. Michael App, Max's local pediatrician, supports the couple's decision to use Martinez's treatments, given the boy's improvements.

"There has certainly been progress," App said. With as poor a prognosis as Zellweger has, App said, "he has continued to surprise me in things that he's been able to do."

App "would not endorse" seeking treatment overseas, although in cases of rare diseasses, he does recommend considering alternatives when all other options have been exhausted.

"I think that when you start to get these rare disorders ... there is going to be very little place to direct people. ... And so I think that parents are unfortunately left to look on the Internet and research other sources to try to figure out who knows the most about this. There seems to be a lot of ongoing research in different parts of Europe that tend to be ahead on certain disorders."

Despite doubts from the medical profession in the United States regarding alternative treatments overseas, Tara Manciu trusts Martinez.

"Her Web site is really informational," Tara Manciu said. "When I e-mailed her, she immediately e-mailed me back. And she gave me a whole list of her patients and the phone numbers and e-mails so I could speak with them and get their input on the treatment."

For her husband, Mike, there was no choice but to go overseas after seeing Martinez's success stories and not getting anywhere with treatment in the country.

"Yeah, it isn't free," he said, "but it's your son, what else are you going to do?"

*************************************************************

Questions to explore further this topic:

What is Zellweger Syndrome?

http://healthlink.mcw.edu/article/921991711.html
http://health.enotes.com/genet.....r-syndrome

What is vitamin K?

http://arbl.cvmbs.colostate.ed.....amink.html
http://en.wikipedia.org/wiki/Vitamin_K

What is blood clotting?

http://health.howstuffworks.com/adam-200077.htm
http://www.tiscali.co.uk/refer.....29864.html
http://www.med-help.net/BloodClot.html

GAMES

http://www.nutritionexploratio.....s-main.asp
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adedios
SuperPoster


Joined: 06 Jul 2005
Posts: 5060
Location: Angel C. de Dios

PostPosted: Fri Feb 09, 2007 10:47 am    Post subject: Update on Tufts vitamin K research Reply with quote

Tufts University
9 February 2007

Update on Tufts vitamin K research

Friedman School Nutrition Notes-January/February 2007
Boston In a recent article in Current Opinion in Clinical Nutrition and Metabolic Care, Sarah Booth, PhD, lab director of the Vitamin K Laboratory at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University (USDA HNRCA), reviewed studies regarding vitamin K status among the elderly. Although older adults seem to consume more vitamin K than younger adults, many seniors are still not meeting the recommended intake of vitamin K.

"Research has shown poor vitamin K intake may be associated with conditions such as bone fractures, bone loss, hardening of the arteries, and osteoarthritis," says Booth, who is also a professor at the Friedman School of Nutrition Science and Policy at Tufts.

Although it may be important for the elderly to increase dietary vitamin K, Booth notes that it is also essential for researchers to examine factors other than diet that may affect vitamin K status in the body. "One promising area of research is the interrelationship between estrogen and vitamin K," says Booth, "as studies indicate that low estrogen levels in menopause may change the way vitamin K is metabolized. More research is also needed to determine vitamin K status of elderly men, as well as to determine what populations, if any, might benefit from vitamin K supplements."

In a study published in Nutrition, Metabolism & Cardiovascular Diseases, Booth and colleagues examined dietary patterns of more than 40,000 men to determine if phylloquinone, the form of vitamin K found in plant sources like leafy green vegetables, could serve as a marker for reduced risk of developing cardiovascular disease.

Booth and colleagues, including corresponding author Arja Erkkila, PhD, of both the USDA HNRCA and the University of Kuopio in Finland, determined that high phylloquinone intake did not appear to be an independent risk factor for cardiovascular disease. However, men consuming high amounts of phylloquinone generally had better dietary habits, such as eating more fruits and vegetables and less saturated fat. Men consuming high amounts of phylloquinone were also less likely to smoke and more likely to exercise or take dietary supplements.

The association between high phylloquinone intake and a healthy diet and lifestyle led Booth and colleagues to conclude that phylloquinone intake could indeed play an important role in cardiovascular research studies. "...In large population groups, phylloquinone may provide a more robust assessment of overall cardiovascular risk status than assessing multiple individual diet and lifestyle habits," write the authors.


###
The Vitamin K Laboratory, as part of the Agricultural Research Service (ARS) National Food and Nutrient Analysis Program, has been contributing vitamin K food content data to the National Nutrient Databank for nearly a decade. For more information on vitamin K research at the USDA HNRCA, refer to "Tufts Researchers are Keeping Track of Vitamin K" in the May/June 2006 issue of Friedman Nutrition Notes [http://nutrition.tufts.edu/news/notes/2006-05.html]. The ARS is the chief scientific research agency of the USDA.

Booth, SL. Current Opinion in Clinical Nutrition & Metabolic Care. 2007 (January);10(1):20-23. "Vitamin K Status in the Elderly."

Erkkila AT, Booth SL, Hu FB, Jacques PF, Lichtenstein AH. Nutrition, Metabolism & Cardiovascular Diseases. 2007 (January);17(1):58-62. "Phylloquinone intake and risk of cardiovascular diseases in men."

If you are interested in learning more about these topics, or speaking with a faculty member at the Friedman School of Nutrition Science and Policy at Tufts University, or another Tufts health sciences researcher, please contact Siobhan Gallagher at 617-636-6586.

The Gerald J. and Dorothy R. Friedman School of Nutrition Science and Policy at Tufts University is the only independent school of nutrition in the United States. The school's eight centers, which focus on questions relating to famine, hunger, poverty, and communications, are renowned for the application of scientific research to national and international policy. For two decades, the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University has studied the relationship between good nutrition and good health in aging populations. Tufts research scientists work with federal agencies to establish the USDA Dietary Guidelines, the Dietary Reference Intakes, and other significant public policies.
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