P_Mom Posted January 9, 2008 Report Share Posted January 9, 2008 Hi all, I received this link from a Mom with a child who had PANDAS and received IVIG. He is believed to be cured, no symptoms in two years, even with illness. Anyway, I did see this site a long time ago and haven't been able to find it again. I wonder how many of you have seen it? It is a site designed by a mom whose daughter has PANDAS and was in the study at the NIMH. Very interesting and informative, I encourage all of you to check it out. Kelly http://e-pandas.com/index.html Link to comment Share on other sites More sharing options...
bmom Posted January 9, 2008 Report Share Posted January 9, 2008 Awesome info! Thanks Kelli. This really sounds like my son and nailed him on the head. I am swaying more towards PANDAS now. I just wish it had the info about the daily use of antibiotics filled in. The funny thing is we all got checked for carrier of strep and they all came back negative. I asked the Dr. if it could be our dog as he gags a lot and he thought I was really crazy then. I just wish I knew how to proceed or wait as he is doing fine now-no symptoms. I hate to do anything, but will kick myself if I should have. Thanks for the great info though. Link to comment Share on other sites More sharing options...
P_Mom Posted January 9, 2008 Author Report Share Posted January 9, 2008 I knwo EXACTLY how you feel. My heart sank when the part about the preventative antibiotic wasn't filled in also! Plus, we are in the same boat. No treatments right now, everything is okay RIGHT NOW, but, what happens next? Hate to medicate when not necessary and potentially cause other problems, but.......... can't imagine leaving these kids vunerable to strep and more attacks! I am leaning to the strep and the attacks on the brain being the bad guy as opposed to preventative antibiotic. Kelly Link to comment Share on other sites More sharing options...
bmom Posted January 9, 2008 Report Share Posted January 9, 2008 The other thing I am unsure of- well I guess 2 things: I have my son on Bontech as I am still unsure of Pandas Vs. not so I am questioning if that is the best if he is PANDAS. The other is what I can do about the nasal issues as he seems to be stuffy so much. OK one more - I havent had him tested for Candida and it talks about itchy inner ear- he is constatly poking at his ear and he says it is itchy. I do an ear wash on him once a week! Should I have him tested? Thanks to all who has info. Link to comment Share on other sites More sharing options...
emma1 Posted January 10, 2008 Report Share Posted January 10, 2008 bmom -- Unfortunately, every child is different -- it would be sooooo much easier if there were just a diagnosis of PANDAS and then a single treatment! However, I wanted to tell you that for my daughter (who has strep related issues) -- she did better off of the Bontech. I had started her on Bontech and then on daily antibiotics. The Bontech didn't make a major difference. The antibiotics made a huge difference -- but there were still symptoms. It wasn't until I stopped the Bontech -- and continued the antibiotics -- that we got to the point where I felt pretty good about how she was doing. She is on daily Pen VK right now. From this board, I am thinking that it might be the grapeseed, as that boosts the immune system, which is not great for an autoimmune disease. Omega 6 and 9 are also to be avoided. Hope this helps. This summer, I had her on Zyrtec too -- and suprisingly that seemed to help. I stopped it during winter as she didn't seem to need it, and I saw no increase in symptoms. Link to comment Share on other sites More sharing options...
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