Suggestions from Dr. Maruta for younger children w/NF1

I recently emailed with Dr. Maruta regarding Propolis and Bio 30 for my son. My son, who is 22 months old, is too young to start this product, however Dr. Maruta gave me some suggestions about things I can do for my son in the mean time. I wanted to share it with all of you. I am simply pasting what he emailed to me:

In short, your son (less than 2 years old) is too young to take Bio 30.
Please wait until his weight reaches around 25 kg (55 pounds). If we understand
correctly, he has no tumor as yet. In this case, I would recommend you
to give him two things first: vitamin D3 (tablet or ointment) and a plenty
of milk (the best source of calcium). Do you know why?

NF1 children have a fragile bone structure, due to vitamin D3/calcium-deficiency.
these two things would help him build the "sturdy" bone structure, and
get rid of cafe-au-lait (brown) spots if he has.

Secondly, please give him daily a so-called "violet vegetable juice" containing
red grape, blue berry, and a few other red/violet/blue vegetables/fruits.

The best of all would be "Natto', a Japanese fermented sticky soy bean product,
which is a 1000 year old daily Japanese cuisine. Do you know why?

This product contains a special vitamin called K2 or menaquinone-7 (MK-7)
which suppresses the growth of NF tumors and many cancers. A half pack (20-25
g) daily would be sufficient for your boy. In a few months, Nf1 (skin) tumor disappears.

By PVA
Posted March 21, 2009 at 9:55 pm
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My son is 13 and only about 55 lbs (25 Kg) if he's lucky.
I hope this works for him. I might have to speak to his doctor first.
Will this work on adults as well?

By rivergrl21
Posted March 22, 2009 at 5:51 pm
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It amazes me that there are simple things we can do sometimes that may help and yet no Dr will even suggest things outside the normal protocol of prescription therapies and "wait and see". My son 15 months have an optic glioma in the chiasm, over 75 cafe-au-lait spots, and two skin tumors, one on his haand the other on his head above his ear. I am feeling desperate and and willing to try anything as I see his future become harder each day. I am walking the line of too desperate. I want to be cautious but also want to help. This is such a difficult disorder. I will definately look into the Natto product. My son also has a problem with lactose so we switched him to soy which makes me think we are prob making the calcium deficiency worse. I have some research to do. Thank you so much for sharing this information with us. You know how far a little bit of hope can take you. Please share any more information you may find.
Dana

By Cara_B
Posted March 23, 2009 at 12:24 am
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Thank you for sharing the info your doctor gave you. Even if it isn't right for every child, just having some ideas to bring to our geneticist helps.

By rugrats3
Posted March 23, 2009 at 12:09 pm
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Thank you for sharing this information. My daughter is 7 and was diagnosed with NF1 at 6 months of age. I never knew that this disease could cause a calcium deficiency. I will discuss these treatments with her doctor and conduct my own research too. If there is something out there that can reduce or elminate the spots, I will try it. The kids at school tease her about them all the time. I wish all doctors were able to provide this information about home remedies for NF. Thanks again!

By CindyLouWho
Posted March 26, 2009 at 2:46 pm
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I believe Dr. Maruta is suggesting the Natto because of its very high K2 content. K2 like the CAPE in NZ propolis or the ARC in Brazilian propolis inhibits the RAS/PAK1 pathway which is believed to contribute to NF tumors. Red grape may also have anti PAK properties hence the info about the juice. It's still theoretical because to my knowledge no formal human studies have been done.

The vitamin D issue has been known for some time with several articles from Asia and more recent work here. In terms of fading CALS, a couple of people tried the vitamin D cream a few years ago and it did fade CALS, just faded them slightly after a long period of time. Some did not feel the result was substantial enough. Supplemental D is an area that I would definitely like to see studied further. More info is required to determine why the connection exists (if it does) and whether this is a D deficiency issue or a D metabolism issue.

As an FYI...K2 derived from Natto bean is available in supplement form. NOT for children obviously but just as an FYI in case someone wanted to ask about it for themselves. Some people have linked soy consumption to an increase in tumors though Natto seems to have different properties because it is a fermented soy product. Also it has an interesting effect on fatty acids. But who knows?

http://www.aviva.ca/shop/products.asp?itemid=6214&catid=165

Always be very sure of what you are doing before you do it.

Cindy

By roma97
Posted March 26, 2009 at 7:28 pm
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Do you know whether the recommended vit D3 suppl is IN ADDITION to the 400 units provided by children's multivitamins which is 100% RDA for infants and 50% for older children?

By mom2001
Posted March 30, 2009 at 6:01 am
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Hi Roma97,
Based on the research I have done, I do a multivitamin with the 400 units of vitamin D and also a vitamin D supplement that has 500 units of vitamin D in it. I have found that this number is quite conservative, but I encourage you to research it on your own so you are completely comfortable. I may drop the extra supplement in the summer when my son gets more vitamin D from the sun. I am not sure yet on that. Let me know if you have more questions.

By RyanC
Posted March 31, 2009 at 10:52 am
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I'm realitively new to the site. I read the above posting concerning Propolis Bio 30. I have gone online to search for it. I saw the product and some results of trials but other than that no much info. I wondered if anyone know more about actual use for consumer for example...... age can start taking, tastes ( possible to mix with other liquid if neccesary) side effects... Thanks

By CindyLouWho
Posted March 31, 2009 at 12:13 pm
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Ryan, If you go to the Children's Tumor Foundation BB and look for a thread called Amazing Update you can read a bit about bio 30. After that thread you can read more about it by searching the same site for keywords bio30, bio 30 (with the space), Dr. Maruta, and propolis. The initial thread was the Amazing Update one but searches under those other words will bring up additional threads. Bio 30 is nasty stuff. Think of a combination of pine gum and ear wax made into a liquid. Ewww....sorry, just telling it like it is. I do like the smell of it though. Personally, I would not recommend mixing it with other liquids as it tends to get a gross consistency when mixed. One can just as easily put it into a veggie cap and swallow that. The caps can not be made up very far in advance but it is still an easy way to bi-pass the taste and the fact that it tends to coat the teeth and tongue IMHO. Anyway, you may want to research it further before making a decision one way or another.

Cindy

By kiol
Posted March 31, 2009 at 1:14 pm
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I’m new to NF1 as I was diagnosed just a couple of weeks ago (at age 27). Since then I’ve read a lot of posts that deal with Bio30 at the various NF-BBs. Though I am in no way an expert, I found Marutas work on Bio30 very reliable, especially as it has been peer reviewed. Of course, whether it will really have lasting beneficial effects or not remains to be seen.

I was surprised by the Natto thing though. Natto is made of fermented soy and some people say that soy stimulates the growth of neurofibromas.

Does anyone have any information on whether products of fermented soy (as Natto) are any less dubious for NF folks than are products derived from pure soy?

Does anyone know if meanquinone-7 that contains Vitamin K2 and is available as a nutritional supplement is also made of soy?

thanks! kiol

By CindyLouWho
Posted April 2, 2009 at 11:15 am
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Natto bean has the highest K2 content so it does seem to be the basis for many of the K2 supplements. Many brands state that right on the label where others do not stipulate what the source is. Some K2 supplements also contain alfalfa, which may be of concern to some folks.

The whole soy issue is just very complicated. Soy has so many different properties, some of which may be beneficial and some which may not. In general, there is still debate on the benefits versus the risks. Health advocates, doctors, and scientists seem to be split on the issue so it is not surprising that lay people have varying views as well. Cancer patients, particularly those with hormone dependent cancers, are often told to avoid soy as a precaution. As a perimenopausal woman with two daughters in puberty I prefer to avoid soy. Most of what we get in the Western diet is not fermented soy....natto would definitely have to be an acquired taste. Much of what we get is used as filler in processed food and may be genetically modified (by the same companies that brought us the likes of agent orange, ummm...no thanks!) That's just my opinion. I'm not at all convinced however that if soy were to affect NF tumors that it would be because of the estrogenic effects. Soy milk for example when it is supplemented is more likely to contain D2 when what people really need is D3...we definitely know that D3 is linked to NF tumors though the mechanism of that remains unknown as well. The people who stated that they noticed an increase in tumors were consuming soy milk specifically. So it may have nothing to do with the soy per se but rather that the wrong vitamin D has been added. Soy may also have an effect on other nutrients in the body and may have higher concentrations of some fatty acids which could have an effect of RAS as well.

Does fermentation have an effect on soy? I am certain that it does as many believe that fermented soy is the only form that is edible. Some evidence suggests that the isoflavones are reduced during fermentation. Products like miso, a fermented soy bean paste used in soups, are reputed to have some amazing effects, in fact they were reportedly fed to the victims of radiation poisoning after Hiroshima. The theory being that prolonged fermentation protected against radiation effects.

While Natto bean is the highest source of K2, I believe sauerkraut is also a source of dietary K2. See below for an interesting article on sauerkraut.

So that doesn't help much, I know. It is always an individual decision. If anyone does try the Natto please let us know how that goes.

http://www.westonaprice.org/soy/infant.html

http://westonaprice.org/soy/soy-osteoporosis.html

http://www.eurekalert.org/pub_releases/2002-10/acs-sca101702.php

http://www.consumerhealth.org/articles/display.cfm?ID=20000501001338

Cindy

By kiol
Posted April 3, 2009 at 1:37 pm
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Thank you for your thorough response Cindy!

I'm glad there seem to be at least some promising avenues for treating NF on the horizon, both on the level of medical development and on the level of benefits from natural products. But it is still all too often: “We know this mechanism or substance is important. But we cannot say whether it’s a good thing or harmful”. This makes me kind of frustrated and hopeful at the same time. As someone newly diagnosed I feel, if God presents me with this NF, he’d better present me with the solution to it the very next day, too. He doesn’t seem to hurry, though.

I very much hope that all the promising stuff is being followed through by the scientific community. Every now and then something comes up (vitamin D a couple of years ago, propolis two years ago, natto this year) but I feel what’s lacking is capacities to speed up research that lead up to clinical trials. I hope, talk about products like these will not vanish from the surface one day without clear results and we’d have to ask “whatever happened to…?”

Anyway, I guess we have reason to be optimistic.

By RyanC
Posted May 29, 2009 at 8:27 am
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Just wondering about the "violet vegetable juice". Pretty naive about it. But does anyone know whether there is a brand of juice you can buy at the grocery store that contains some of if not all of ingredients? Or is this a "specialized" juice????

By Jaidyn16
Posted May 29, 2009 at 1:20 pm
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do you have a way of contacting this Dr. I have a 5 yr old that seems to have only 1 plexiform neurofibroma around her right eye and we are willing to try anything natural to see if it decreases the size of the tumor! She drinks a ton of milk but would be interested to know what he thinks she in particular needs or shoudl try. I have been researching propolis and k2 ALOT since I first received this updated info and it seems all natural but thought I should get more info since he says not to use until they are 55 lbs.Thanks so much for the info already posted here! and any more insight to come!

By creamywhite
Posted September 14, 2009 at 5:54 pm
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My 5 year old daughter Jakya has been using propolis liquid (Bio 30 Alcohol Free) for about 9 months. She has it on a teaspoon every morning, about 6 drops in between layers of yogurt to disguise the taste. It is an amazing product which is said to reduce the growth of tumors. Jakya has a extremely painful tumor on her spine so we thought we would explore this option. Even if it does nothing to prevent the growth of the tumor we are happy that she is taking this supplement because it is a natural product with health giving properties! Fingers crossed it can help her!

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