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Califamily last won the day on May 15 2014

Califamily had the most liked content!

About Califamily

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  1. 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/
  2. 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?
  3. 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!
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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 wit
  9. 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.
  10. 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!
  11. 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 t
  12. 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!
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