Vitamin D
Posted: 14 October 2008 02:04 PM   [ Ignore ]
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My son went in for a check up because he was feeling very fatigued even in between episodes. The doctor at Mayo did a vitamin D test and found an extremely low level, one of the lowest he has seen. He went on 5000 IU’s of supplements per day, within 2 weeks was much, much better. After three months, his level was more in the normal range. Interestingly he also has not had an episode since March when he went to Mayo, where before he seemed to never truly come out of it (a year of fog). He was homebound last year because he could not keep up in school or even wake up to go to school (12 week episode, 8 week episode), now he is back in school and more normal than I have seen him in 2 years and the only thing different is the Vitamin D supplements and melatonin a couple times a week to help regulate his sleep when he needs to.

I wanted to pass this information on since it was such a major difference in my sons life. There is now also a ton of information out there on what a low vit d level can effect..worth checking out, relatives and friends that have seen the difference in my son cannot believe that a supplement could make such a difference, we are all now taking it regularly. This is definitely something to watch, specifically with the episodes and lack of sun during them. The food and multivitamins generally are not enough. My son also goes to the tanning bed 2-3 times a week as an extra source of vitamin D.

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Posted: 05 January 2009 05:39 PM   [ Ignore ]   [ # 1 ]
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Has anyone else tried the Vitamin D? It sounds very interesting, yet I don’t see a lot of activity on this topic… I have KLS myself, and am open to ideas about how to improve the situation.

Taylor Ralston

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Posted: 23 January 2009 03:58 PM   [ Ignore ]   [ # 2 ]
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My son Chase is 15 and was just diagnosed with KLS. He has had Four episodes since Sept.2008 I did read this and did start Chase on a low dose of 1000/IU once a week or 1 every other week. I also mentioned this to his doctor and he said it was fine just don’t do to much. You may choose to ask your Dr. first. Chase has not had a episode since Dec.4,2008.He was having one a month. Now whether this has anything to do with it nobody knows. He also started taking Amantadine twice daily the first of Jan. and they want to try Provigal when in a episode. Good luck to all.                      Jill

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Posted: 30 July 2009 03:47 PM   [ Ignore ]   [ # 3 ]
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My daughter also had low Vitamin D level. She was found to not be absorbing calcium even when they added vitamin D to it. And she had mild osteoporosis. months of 2,000iu vitamin D3 did nothing. 5,000 did nothing.  Even 10,000 iu Vitamin D3 did not bring her level up. They finally put her on 12,000 iu of a highly absorbable liquid form Hasn’t been re-tested yet (soon). We’ll see. The doctor said Vitamin D is needed for cells to use thyroid hormone.

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