Califamily

Dear Group, I am sorry I have not been active for a while and not always super quick about responding. But lately I have been reading about mito issues Here is some info about Richard Kelley at Johns Hopkins. http://www.epidemicanswers.org/wp-content/uploads/2010/05/Dr.-Richard-Kelly-Autism_Mitochondrial_Disease.pdf I haven't had my son tested for this, but reading another blog he makes a case for mito in a lot of multiple hit illnesses which is treatable. http://epiphanyasd.blogspot.com/2014/06/pandas-pans-penguins-and-autism.html http://epiphanyasd.blogspot.com/2014/08/double-tap-autism-perhaps-important.html This blog is quite good Best, Califamily

I started this thread -- and originally had wondered if glcnac were like ivig -- you were pushing out the bad igg with new igg. so if you supplemented with glcnac == were you trying to push out the bad glcnac. However, I still don't understand it and the mechanism. I wonder what the NIH thinks about this? or if any other doctors or researchers has a pov?

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!

It is a supplement Jarrow makes one n-a-g 750. It contains shellfish (prawn) so may not be suitable for lots with an allergy We have not tried it

At the PANDAS parents conference in SF, Dr Cooperstock talked about GlcNAc being important in PANDAS and that GlcNac antibodies were formed. I am assuming this is one of the papers he was referencing? http://pandasnetwork.org/CunninghamJNICaMKinase.pdf Antibody-mediated neuronal cell signaling in behavior and movement disorders GlcNAC has many potential biologic functions as treatment (and scary as I couldn't tell if from the paper below it was good or bad for candida), and its a complex issue. See paper below I came across this paper and it is somewhat mind-boggling all of its functions! N-Acetylglucosamine Functions in Cell Signaling http://www.hindawi.com/journals/scientifica/2012/489208/ This is highly speculative, but I was wondering if it might briefly block the auto-antibodies while it remains in the circulation. Have any families have tried it? I am nervous as I think the supplement could also cause a chain of reactions? There is a supplement called N-A-G N Acetyl Glucosamine that I am talking about. Can't answer anything else, just curious if anyone has tried it?

Hi Mar, Can you share which things you did to improve the gut and immune function. What probiotics, etc and dosages did your child take? Thanks, Califamily

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

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."

Thank you for your replies. As many of you probably experience -- it is the false hope of seeing recovery and then to see it slip through your fingertips. Instead of pleasure in your days, it is filled with despair and hope. This is quite the rollercoaster I read a NYTimes Article where the main point is that you learn more from suffering than only knowing happiness. At this point, happiness for an extended period of time would be wonderful. And, hearing from you who now have had sustained success-- that is reason for hope and happiness. Thank you to all for your thoughts.

Hi Just wondering for those in the last 3 years -- how often have you done IVIG and at what dose? How old was your child and what was your success? My son appeared to be responding but at 4 weeks he had an exacerbation. I know Dr. K usually thinks 12 weeks but curious your perspective Thanks!

Hi All, I am new to these Board and wondering if you all could help me. My 15 year old son has probably had PANDAS for a while (significantly over the last year for sure). In the Fall, he was not diagnosed and kept having significant exacerbations. Finally in January he was put on antibiotics and improved significantly. He has continued to have small exacerbations which are probably triggered by other things now. We did an IVIG 10 days ago and hoping to see improvement over the next 12 weeks. However, he has substantial intrusive thoughts (like a reel of past memories and thoughts) that were never present before. He also mouths his thoughts during an exacerbation. Has IVIG helped substantially with these thoughts. I am worried that his circuitry has been damaged? Also, did people have a sudden silently mouthing of thoughts during an exacerbation? Any input would be appreciated! Sincerely CaliMom

Hi Ht's Mom and Pepper1, Would be very interested in an update for your kids. Was IVIG effective over time? Also, intrusive thoughts have gotten worse with every exacerbation and wondering how you are dealing with this? Did IVIG help? Thanks!