anecdotal vs research - was- Co Q 10

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Amy, Yes I totally agree that everyone reading needs to understand that there are no clinical studies to back up some of the things said on here. There are quite a few studies regarding various supplements used, such as the CoQ10, DHA, Omega 3's etc..... how much they specifically help help issues related to DS is really just anecdotal. I am a big supplement proponent, always have been even for myself. So it would make sense that I would seek out supplements that may have a positive effect on . I have no way to prove that she is better off with them then she would have been with out them. And even though in my heart, I know the SCD helped her more then anything else, again, I have no way to prove that.As for Prozac and Gingko- Stanford has in no way endorsed

either, nor come up with any kind of dosages for either. They have only used mice so far, never any people to be able to even suggest a dose. I do use gingko and feel fine about that, no one really has a problem with it, though it's not endorsed in any way, it's my own free choice. Prozac is not only not endorsed, it's NOT RECOMMENDED and those who give it to their children ( and that is their free choice btw) are doing so totally on their own with only their local Dr's support in the fact they are the ones who wrote the scripts for it. If people want to do that, that of course is their decision, I just want to make absolute sure that other people contemplating it, understand it's a choice that is unsupported and not advised by current researchers. Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----To: DownSyndromeInfoExchange Sent: Saturday, July 5, 2008 1:20:44 PMSubject: RE: [DownSyndromeInfoExchange] Co Q 10 This is the problem with

studies with an n (study size, number) of 1. My son was born with 2 holes in his heart and a bicuspid aortic valve. He took no supplements. Both holes in his heart have closed and his bicuspid aortic valve miraculously became normal. He was released from the cardiologist at 3 1/2. I do not disagree that there are benefits to using CoQ 10 and all the other supplements and drugs that people discuss on this listserve, but I do think we need to be very careful about how we extrapolate from our personal experiences and the studies done on 5, 8, 10 children. I think this is especially true when talking about neuroactive compounds. This makes being supportive of, and funding, this research even more important. I hope they keep at it,Amy, mom to Ben, almost 4>>Reply-To: DownSyndromeInfoExchange >To: <DownSyndromeInfoExchange >>Subject: [DownSyndromeInfoExchange] Co Q 10>Date: Tue, 1 Jul 2008 14:04:01 -0500 (Central Daylight Time)>>>Well with he had 3 holes in his heart at birth. All smaller, nothing>they were jumping on to do surgery, but they did not expect them to close,>and said he would need surgery before the age of 3.>>I started using co Q 10, neither his ped or his cardiologist had any hope>it would do anything. His ped said the dosage was in the higher

range but>he was fine with it. His card told me I was wasting time and money. Oh>well. We used co Q 10 anyway. In 6 months time all three holes had>closed. In a 12 months time we were released from the cardiologist with a>mild endorsement of co Q 10 and he wanted to see him in a year for another>echo, to be sure the holes were really closed. A year later, and a>great echo later, the cardiologist started recommending co Q 10 to all his>patients. never had any heart surgery. Has no holes in his heart.>He is 9. Do I think it was just the co Q 10, no. I think prayers played >a>huge part. But that is my faith showing through.>> "Jules"> Romero>-- *Re: *[DownSyndromeInfoExchange] Clearing up the Prozac/Research>confusion>>>My friend is doing a breastfeeding study with Coq10 and her baby girl with>DS.>She is taking the Coq10 and breastfeeding.. they are studying her milk. (>University of Cincinnati?? )>>The little girl is doing VERY well. She is about a year now.. and very>talkative and social.>Course since she has been on coq10 since birth nearly, they have nothing to>compare it to.. but still.>>Steph>> Re: *[DownSyndromeInfoExchange] Clearing up the Prozac/Research>confusion>>>These are indeed exciting times. And exchange of information is key. As>is truth and responsibility. As a parent I want to hear what other >parents>are doing. What the research is doing, and what is upcoming. From all>aspects. It can indeed be very confusing! If we don't take any risks>(according to what others deem risks) then we stay put and do nothing, and>step back in time. I remember when I first approached our pediatrician>about coQ10, nutrivene D, etc.... None of that was seen as anything of>use by our ped, and he only approved use of it by weighing the risk

>factor.> Some things we did without approval at the time. Now he approves of >it,>after seeing years of benefit.>>Being on the local Board of Directors of our DS group, I get a lot of>parents who still think that I take a lot of risk with my son in what>supplements I choose to use. I get called cutting edge, risky, etc. Yet>here I would be deemed conservative. Its all relative I guess.>>Thanks for everyones input on this subject.>> "Jules"> Romero>.>>>>>>>>------------------------------------1. Anything suggested on this site or opinions offered are not intended to be medical or pharmaceutical advice or otherwise take the place of your physicians orders, nor to diagnose or treat your specific health problems.

Please discuss all methods of treatment with your practitioner. 2 *****WARNING: Flames and inappropriate treatment of other members on this list will NOT be tolerated.3. Our HOME page is http://groups.yahoo.com/group/DownSyndromeInfoExchange where all archived posts as well as photos,links, files, articles etc. are found. You "MUST" have a Yahoo ID and pass word to enter it.To contact Carol, owner & moderatordoihavtasay@...To contact Kathy, owner & moderatorkathy_r@...To contact , owner & moderatornoliptoday@...