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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

qannie47

Well this is encouraging....

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Thank you for posting the link; I am going to see if DS13 can get the HPHPA testing done quickly. Hes a PANDAS+ kid, His Cunningham test shows crazy high dopamine autoantibodies, and he's had gut issues since forever. Would like to rule out yet another potential issue. I never would have seen this so many thanks!

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ibcdwc: I don't know that I agree with being incorrectly diagnosed. As the research evolves, we can see that there is a lot of overlap between all of the disorders that fit within the spectrum. Perhaps, as more research is done, the labels will change...leading to a clearer picture where many of the psyche disorders overlap, unique onto themselves, but have the same common denominator of immune/gut origin.

 

Over time, as I have researched Pandas,and related disorders.... I keep coming back to immune, gut, methylation.....I think this is the elephant in the room that will eventually change medicine, and change lives forever....

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Quannie, I agree with you. My issue with reading "PANDAS was incorrectly diagnosed," is that it opens the door to those who do not believe in the disorder. The article should have elaborated on that point and indeed it should have noted that the umbrella is wide. That parent is blaming the PANDAS antibiotics (treatment) on the symptoms. Back to chicken and egg. Chances are the immune system was not correctly functioning to begin with, and therefore allowed the gut to get so out of whack in the first place.

Edited by ibcdbwc

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Here is a webinar by Dr. Greenblatt. He talks about the HPHPA in it.

 

 

Our dd has high HPHPA, high dopamine and low norepinephrine. We found out from the OATS test done through The Great Plains Laboratory. They have a great library of webinars:

 

http://www.greatplainslaboratory.com/home/eng/recorded_webinars.asp

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This is really exciting! We need the mainstream media to push the mind/body connection. Thanks for posting. I think anyone who reads this post is going to get their PANS/PANDAS child checked for HPHPA!

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Searching for help: have you started a probiotic regimen then...or something else to restore the balance? If so, what, and do you see any positives?

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dsmom - We're using Culturelle and Saccaromyces Boulardii for the Clostridia - this was suggested in the interpretation of the OATS test. NP also has dd on other rotating probiotics for yeast markers, such as Prescript Assist (soil-based), UltaFlora 1B, etc. We use a different one every month (in addition to the Culturelle and Sacc. Boul.) Also Nystatin for 7 months, and we just started Diflucan for 1 month.

 

The NP also has some herbals in the Candida Protocol that dd will use for 1 month each and then switch. Things like Candacid Forte, Capryllic acid, ADP and FC Cidal.

 

Just getting started on all this. IF she improves, it will be hard to know what is helping, as she is on other stuff that she rotates for high IGG antibodies to mycoP and EBV, possible Lyme. Things like Viracid, Immucor, Transfer Factor Plasmyc, etc. - using 1 a month and switching to another. She's also on prophylactic Augmentin, which I hate because it's gonna kill all those probiotics - but I'm giving them to her far apart. (She's becomes extremely depressed without the abx...)

 

I'm just amazed how many of our health problems can be tied directly to our guts.

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The article that was recently published re schizophrenia being affected positively by Culturelle type probiotics made me go out and get that type-- our d (14) is taking it once a day -- away from the Augmentin/azithro

 

I am hoping it will be helpful - there is obviously some positive neuropsych connection.

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There are a few posts in this blog about "weeding, seeding and feeding" the gut to address SIBO with Soil Based Organisms and resistant starch/psyllium. The comment sections are informative as well.

 

http://drbganimalpharm.blogspot.ca/

 

We started this protocol a couple of weeks ago after DD's yeast flare. So far, so good - itching and ticcing have resolved and the dark circles under her eyes are almost gone. DD is taking a rotation of probiotics, culturelle, align, RenewLife Ultimate Flora, PrescriptAssist, with 2 of the 4 mentioned daily; the most potent ones with potato starch/psyllium. So far we only take one dose of resistant starch/day, I don't want to overdo it.

 

There are seven steps in all:

 

Dr. BG's 7-Steps Paleo* Gastro IQ SIBO Protocol

HOW TO CURE SIBO, SMALL BOWEL INTESTINAL OVERGROWTH
(with major contributions from Tim/Richard/Marie/FTA)

1. Fermented veggies made the ancient way with organic dirt-covered vegetables, ex. kraut, kvass, kim chee, kefir, etc. Read Sandor Katz.

2. Ancient heirloom potatoes, tubers, roots that are low glycemic index (or high if good insulin sensitivity) and ancient heirloom grains, legumes, lentils/dal that are low glycemic index (or high if good insulin sensitivity), prepared the ancient way (soaked, fermented, etc)

3. Soil-based probiotic 1-2 daily if not severely immune compromised (Bacillus licheniformis, Clostridium butyricum, etc)

4. Raw PS (potato starch) 1-3 Tbs + Psyllium (if not allergic) 1 Tbs + high ORAC green powder (I like amazing grass, LOL) in 2 cups plenty of water

5. Exercise low-moderate intensity one hour daily continuously (10,000 steps) to move the gut/peristalsis and overcome broken myenteric musculo-neuro junctions

6. Avoid allergenic foods (corn, soy, gluten/wheat, dairy, nuts, egg whites, etc). Avoid GMO products and livestock/poultry fed GMO crops (corn, soy, etc).

7. Heal hormones and immunity -- take adrenal support, liver support, antioxidants etc (I use biocurcumin and berberine to combine with anti-microbials/anti-parasitics). This is particularly imperative for those with reactive hypoglycemia and BG crashes when they go longer than 3-4 hours between meals.

Optional
8. If the above fail, then you have more fastidious overgrowths and require 2-3 rounds of anti-parasitics/anti-microbials/anti-fungals. See what worked for my family and I HERE. If the above still does not fix SIBO, then consider mercury toxicity. Mercury saturates and kills microvilli in the small intestines and also disables enzymes including digestive enzymes.


Here is the first step, the others follow:

 

http://drbganimalpharm.blogspot.ca/2013/11/how-to-cure-sibo-small-intestinal-bowel_10.html

Edited by rowingmom

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I am pretty sure we have the reactive hypoglycemia. Is that from methylation issues? What supplements do you use? He was taking a Blood Sugar Health supplement I thought might help with acne and it did but we also had the best week mentally. Very interesting!

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Sorry, that bit about the reactive hypoglycemia is from Dr BG's post. I should have italicized it. She explains everything she has done in her posts on each topic, so you should find it listed there. She is also pretty good at answering questions in the comments section.

 

http://drbganimalpharm.blogspot.ca/2013/12/how-to-cure-sibo-small-intestinal-bowel.html

 

This should be the link for step #7.

Edited by rowingmom

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