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Tomorrow We Start a New Chapter


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So, after being on abx for about 2 years, we began weaning DS off, very slowly, several months ago. Today was his last dose. Tomorrow, we start 100% abx-free. I plan to drop a good-quality olive leaf extract on his vitamin dish in exchange for the abx, so my fingers are crossed that he's old enough and strong enough to make it through the winter now without suffering any major setbacks!

 

For the most part, he does great. He's acing school and enjoying it in the process. Loves biology, engineering and geometry, especially. His geometry teacher thinks he could take non-Euclidean geometry now and ace it, his understanding of the principals is so strong. He likes English, too, though the pace of the Honors level is sometimes too much for him. He's like a sponge and he absorbs everything he reads, but he reads more slowly than some other kids, and that takes a toll. Right now his class is reading "To Kill A Mockingbird," and he is completely enthralled by it . . . for hours and hours and hours! ;) With his academic workload and his stubbornly remaining perfectionistic bent, he doesn't have a whole lot of time for extra-cirriculars, but he's got a best friend that he hangs out with at school and occasionally on weekends, and he's decided he likes flight simulations on his computer for some of his downtime.

 

He's still a little anxious . . . has been more so ever since we started to wean the abx in a more dramatic way . . . but he's still handled himself and hasn't regressed to the point where we thought we needed to backtrack. Now that he's completely off, we and the psych think that he just needs a little while to really find his full purchase again without whatever it was the abx were still contributing, even if only to a minor degree. He continues on the supplements . . . fish oil, D3, NAC, curcumin, etc., . . . and we won't change any of that for the foreseeable future. Hoping they'll help support him as he moves into this next phase.

 

Thanks once again to all of you who've opened my eyes, poked me from time to time, and supported our family and DS for the last couple of years. I'm really looking forward to the holidays and what the New Year has to bring!

 

All the best to all of you!

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I wish your son and your family health and happiness!

 

May I ask why you choose not to maintain at least a prophylactic dose? Is it simply to see what his base is without any antibiotics? Is gut concerns? Just curious. We are able to maintain remission without any antibiotics, but choose to take a prophylactic dose in hopes of warding off strep. My child is 8, though.

 

Thanks, Vickie. Not continuing prophylactic antibiotics is sort of a default position for now. First of all, his pediatrician, who accepts PANDAS and has treated a couple of kids in our area, isn't big on multiple years of even prophylactic doses; he normally treats for one year, and we've managed to eek two out of him. Secondly, at almost 15 and in high school now, the incidences of strep are somewhat reduced from the elementary school and even junior high days, and though he does react to viruses and allergens, also, strep seems to be the main trigger in his case. And thirdly, the hope is that his immune system has matured and "leveled out" to the extent now that, if exposed again, he'll react more classically and we can get him treatment quickly. But now that we know what this PANDAS monster looks like, even if his throat isn't sore or red, if his behaviors suddenly ramp up, we'll still recognize it for what it is.

 

I never had classic strep symptoms for my entire childhood, though my sister seemed to have strep throat a couple of times each year from the age of 6 until about 12. I was, however, a behavioral handful, and I can't help but look back and wonder if I was having a PANDAS reaction to strep exposure myself. End of that story is, however, that having never actively "caught" strep as a kid, as an adult, I've had several, very virulent, nasty episodes of classic strep throat . . . the go-to-the-emergency-room variety, because it was so painful and I couldn't even swallow my own saliva. So, while I don't wish that kind of pain on my DS, if his genetics play into things at all, the doctors think he will eventually respond more "classically" to strep and less behaviorally.

 

Only time will tell!

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I'm so happy for y'all!!! :) Praying that things hold!!

 

Does this mean that you won't be here anymore? :( If so, you will be missed.

 

Not a chance you'll be rid of me that easily! :P

 

Gosh . . . we still need support and fresh ideas and research . . . . I don't for a minute think we're entirely "past" this thing. We're just moving on to the next step, hopeful that it'll continue to travel a positive trajectory.

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Nancy,

 

That sounds great. Glad to hear things are going well. Just curious as to what kind of Olive leaf extract you are using. We have just started using it in our family but just bought some of the shelf. Wishing you and your family the best of luck and a great holiday season.

 

Dedee

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Nancy,

 

That sounds great. Glad to hear things are going well. Just curious as to what kind of Olive leaf extract you are using. We have just started using it in our family but just bought some of the shelf. Wishing you and your family the best of luck and a great holiday season.

 

Dedee

 

Thanks, DeeDee!

 

As for olive leaf extract, I try to get whatever brand has the highest oeluropein ratio, since that's the active ingredient, though I've not been able to find anything "off the shelf" higher than 18%. And I get organic when I can, either via Vitamin Shoppe or Whole Foods. Right now we're using a brand called Roex.

 

Certainly be interested to hear if anyone else has found something with a higher oeluropein concentration . . . maybe via a homeopath?

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Hey Nancy, Just wanted to let you know that I found an OLE that is 20%. It is online at Vitacost and is made by Nature's Plus. I have no idea if that extra 2% makes any difference but just thought I would share. Best of luck.

 

Dedee

 

Awesome, thanks DeeDee! Another 2% couldn't hurt!

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