Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Hi All,
My brother is 12 yrs old and I am seeing few cafe-li -spots on his body though we dont see any bumps yet. It will be a great help if someone can let me know if intake Vitamin D can help him not getting tumours appearing on the skin. If yes, pls suggest me some Vitamin D tablets/ or any other Vitamin D source that I can start giving him.
Thanks a lot
I think most people would agree that good nutrition is always the best route, and being a retired dairyman I would recommend drinking a glass or two of milk a day. :o). That being said I can't say for sure it works, as I have more bumps than sandpaper. Suprisingly fish is high in Vitamin D, and if you can spend 15 minutes 3X a week in sunshine it helps. My Dr. recommended taking a Vitamin D suppliment, and HIS opinion was that most anyone would be fine (mine is 2000 I.U.). Many people figure if 1 is fine then 2 or 3 would be even better. Not so here. Vitamin D is stored in fat cells and aids in asorption of Calcium. Overdoses over a long time can lead to too much Calcium in muscle tissues such as heart. If you Bing, Google, search Vitamin D levels, you can find a number of helpful places. One last bit of info, many people do not get the tumors untill later in life. I never had any untill my 30's, so maybe all that milk did help as a kid. :o ). Good luck!
I couldn't tell you about vitamin D, what I do know is my son didn't start getting any bumps till he was around 15 and it has progress over the last 5 years. My former neighbor a woman from South Korea has told me numerous times over the year that I should have my son start drinking green or black tea everyday and use green tea soap. Her brother is a doctor back in South Korea and they use green or black tea a part of lots of treatments. So I am going to try it and see if there is any change
rmgsar, My daughter is 11 and is suspected of having NF. We use green tea, not just for drinking in the traditional way but for cooking and in smoothies. You can ground sencha with a mortar and pestle and add it as a coating on chicken or other dishes. The one we use the most is called matcha, it has the consistency of baby powder, very different from regular loose tea. Matcha is great because you don't need to consume much to get a good benefit plus it will blend nicely into smoothies without really altering the taste of the smoothy.
Okay, I'm rambling...but here's where it gets really interesting. Catechins, the healthy stuff in green tea (less of it in black tea), have been found to delay tumors in NF mice. See the first article (5th paragraph in the Discussion section) to see where NF is mentioned. Who knows how much a human would have to consume in order to approach what the mice were given but still when I saw your post I thought it was worth mentioning.
http://www.relaxsipenjoy.com/catechins_flavonoids_antioxidant_powers.aspx
http://en.wikipedia.org/wiki/Catechin
http://www.relaxsipenjoy.com/catechins_flavonoids_antioxidant_powers.aspx
To the original question on vitamin D. Godisgreat, studies have found that the most tumored NFers are vitamin D deficient. While we still don't know why that is some NF doctors are now recommending that their patients take some vitamin D3 supplements. That is also in keeping with recent research outside NF that has found that vitamin D deficiency can be implicated in other serious diseases. Unfortunately, there is no formal human study that shows what the effects of supplemental vitamin D would be in NF so we can't tell you to give it to your brother....it is something you should discuss with his doctor and then decide for yourself.
Cindy
You just never know what will happen or when.
It is something you should ask his doctor about. I have NF and have been dealing with a vitamin D deficiency for the past several years. I have to take vitamin D3 supplements daily.
Add to the discussion