Califamily Posted May 1, 2014 Report Share Posted May 1, 2014 HI Everyone, I wanted to share something that I believe has really helped my teenage son. During a flare he gets intrusive thoughts (and in a non-functioning fog), can't sleep, urinates frequently and has one tic. Out of a flare, he doesn't have these symptoms. We just finished IVIG about 8 weeks ago (and he had a 2 week flare in there). . Motrin and Tylenol (and to some extent the one time with did prednisone) don't seem to help during a flare ... I think those antibodies have reared their ugly heads and it takes 2-4 weeks to go down. However......good news and want to share it with you all However, we have always, always given fish oil but primarily an EPA heavy Nordic Natural fish oil. About 3-4 weeks ago, I switched to Nordic Naturals DHA heavy formulation based on this article (daily about 1.2 grams of DHA and .3 of EPA). I think there were a couple of times he was going to flare... and it felt like the DHA stopped the inflammation cold in its tracks!) Curious to hear if any of you had experience. I have a pandas doc who says that dha has been know to manage the inflammation in certain illnesses. Here is the article that initially got me thinking...it is basic, but I would say it has been a winner in our arsenal and wanted to share it with you all.... Of course this could be IVIG success to date (and who knows a big back regression may be forthcoming, but I am still thinking that DHA is a big find for us...Note it is the amount of DHA and that it is a higher ratio than EPA (3-1 vs. 1-3). Something about what it does with macrophages seems to strike a bell. I believe my son is more PANDAS vs. PANS. Thanks, Califamily Scientists show how DHA resolves inflammation Date: July 1, 2013 Source: Federation of American Societies for Experimental Biology Summary: Chronic inflammation is a major factor in problems from arthritis to cardiovascular disease, and DHA is known to help. New research in The FASEB Journal, explains why DHA is important in reducing inflammation, and provides an important lead to finding new drugs that will help bring people back to optimal health. Researchers found that macrophages use DHA to produce "maresins," which are the "switch" that turns inflammation off and switches on resolution. The FASEB Journal, helps explain why DHA is important in reducing inflammation, and provides an important lead to finding new drugs that will help bring people back to optimal health. Specifically, researchers found that macrophages (a type of white blood cell) use DHA to produce "maresins," which serve as the "switch" that turns inflammation off and switches on resolution. "We hope that the results from this study will enable investigators to test the relevance of the maresin pathway in human disease," said Charles N. Serhan, Ph.D., a researcher involved in the work from the Brigham & Women's Hospital and Harvard Medical School in Boston, Mass. "Moreover, we hope to better understand resolution biology and its potential pharmacology so that we can enhance our ability to control unwanted inflammation and improve the quality of life." To make this discovery, Serhan and colleagues deconstructed the biosynthetic pathway for maresin biosynthesis and found that human macrophages are responsible for converting DHA to the novel epoxide intermediate "13S, 14S-epoxy-maresin." Then, they learned how to synthesize the molecule and found that maresins caused macrophages to change their "type" so they no longer caused inflammation (switching them from M1 to M2 phenotypes). "We've known for a long time that DHA tames inflammation, now, we learn exactly how DHA works: via new substances called maresins," said Gerald Weissmann, M.D., Editor-in-Chief of The FASEB Journal. "We encounter inflammation almost daily, but our body has ways of turning it off. This is an important step toward understanding exactly this happens. You're likely to be hearing a lot more about maresins if, or when, new therapies arise from this discovery." TeamTyrion and JuliaFaith 2 Link to comment Share on other sites More sharing options...
queenmother Posted May 1, 2014 Report Share Posted May 1, 2014 We have seen a really nice difference here, too, since starting the DHA-heavy fish oil. For the first time ever, however, my daughter has been complaining of headaches. Nothing horrendous, mind you, but she has never complained of a headache until recently and she just turned 17. I have read that doctors are using fish oil to aid in healing severe brain injuries so I am hoping that there is some healing going on in there. Obviously, if they get worse or persist, then I will seek medical attention but, for now, she seems to be handling everything quite well. I started using the DHA-heavy fish oil after reading an article about it helping with glutamate receptors. I have long suspected that glutamate is a piece of our puzzle and had been using GABA (though never the doses that have been recommended because she complained of feeling foggy). Did your son complain of headaches? Please keep us posted and I am hoping you have on-going, looong-term success!!!!! QueenMother Link to comment Share on other sites More sharing options...
Califamily Posted May 1, 2014 Author Report Share Posted May 1, 2014 We have not had headaches so far, but will keep an eye on it. This is interesting about glutamate receptors. Fish oil has many benefits! Thanks again for your feedback. Best, Califamily Link to comment Share on other sites More sharing options...
3bmom Posted May 1, 2014 Report Share Posted May 1, 2014 Thank you for posting this info. It is so nice to learn what works for others so we can take it into account as we make decisions for our kids. Link to comment Share on other sites More sharing options...
TeamTyrion Posted May 15, 2014 Report Share Posted May 15, 2014 This post inspired me to actively get my Son on fish supplements twice a day and I have definitely seen an improvement. So far we have been on the regular EPA(2)/DHA(1) and then GLA (a bit) formula but it will be interesting to see if a heavier DHA component will benefit even more. Also, my Son can swallow capsules so that helps, as in the past the sweetened liquid stuff didn't seem to go well with him. Link to comment Share on other sites More sharing options...
4Nikki Posted May 16, 2014 Report Share Posted May 16, 2014 There is a fish oil called barlean's fish oil that makes a liquid orange tasting product. The factory is only a few miles from my office. We bought some just to test it. DD doesn't mind it at all. Very reasonably priced at the factory store $15 for a 8oz bottle. Not sure what it cost in supplements isales. Link to comment Share on other sites More sharing options...
Califamily Posted May 16, 2014 Author Report Share Posted May 16, 2014 Teamtyrion, So glad that the post inspired you! I wonder if for a subset of kids that fish oil tamps down some key places in the brain. We are heavy on DHA right now as I mentioned. Curious to hear how your experiences continue over the next few weeks. Good luck! Link to comment Share on other sites More sharing options...
nicklemama Posted May 16, 2014 Report Share Posted May 16, 2014 If your child has trouble swallowing capsules, Carlesons make good tasting liquid fish oils. A PANDAS mom is a sales rep for Carlesons and I've tried samples of the flavors. Not bad at all. Link to comment Share on other sites More sharing options...
MaryAW Posted May 17, 2014 Report Share Posted May 17, 2014 We use the Nordic Naturals Ultimate Omega Jr. which is more EPA than DHA, and we have seen such amazing results! I am intrigued by your luck with DHA but hesitant to switch because my daughter does so well with what we are using. I say this in almost all of my posts, but I think the Omega 3's and getting the vitamin d level over 50 ng/ml are the two most important things we can do to heal our children. Link to comment Share on other sites More sharing options...
susieq22 Posted May 17, 2014 Report Share Posted May 17, 2014 Thank you for posting this- I think I'll try switching to a high DHA product. I found a nice article on the subject at the Life Extension website: http://www.lef.org/magazine/mag2008/jan2008_report_dhafishoil_02.htm Link to comment Share on other sites More sharing options...
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