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My new Pandas rabbit hole is glutamate. I've read the posts on here about it and some recent research. It makes sense that flares could be glutamate storms and that's why NSAIDs (Advil) as glutamate antagonists, can have such an immediate positive effect. We just ran genetic info through Nutrahacker and over and over it says to avoid MSG (glutamate) and to take NAC (as well as other things). Then I looked up glutamate and some interesting info: https://unblindmymind.org

The biochemist Katherine Reid reverses her daughters autism with a glutamate-free diet. In some ways it seems like a very restrictive diet, but in the end if you eliminate processed/manufactured foods you can avoid glutamate (even the "natural and organic" foods can contain glutamate). Add glycophosate into the mix (Roundup-use of which has drastically increased in last decade) and it creates a perfect storm. Some have said that the reason a gluten-free diet may work for Pandas kids is really because it reduces glutamate. There is lots of info on glutamate and neuropsychiatric effects. These are just a couple:

 

https://www.ncbi.nlm.nih.gov/pubmed/24636977

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4756530/

 

Can some experts chime in? Has anyone else done Nutrahacker (or other sites) and found info on MSG etc?  How many Pandas kids have this? Would it make sense to try NAC? I've heard some people have a very bad reaction to it. 

Edited by mama4

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Mama4 --

If you've searched threads on the glutamate topic here, then you've probably seen plenty of my posts in that regard.  We've never done Nutrahacker or any other gene testing to date with DS; we "lucked" and trialed-and-errored our way into effective treatment without it.  My introduction to the glutamate connection with PANDAs and anxiety behaviors in particular came via research conducted by Dr. Rothstein with respect to glutamate modulation in anxiety disorders and the glutamate modulating properties of beta lactam antibiotics.

I did some reading on a non-glutamate diet but honestly, given all the naturally occurring glutamates even in fruits and vegetables, it really did just appear to us, for our family and lifestyle at least, to be overly-restrictive.  We do, however, eat preservative-free and largely gluten free (rice and quinoa pastas rather than wheat, next to no bread, etc.), and that has been a positive for all of us in terms of weight and general inflammatory issues.

NAC has been a part of my entire family's supplement regimen for years now; DS takes the most given as he has the highest tendency toward anxiety, but DH and I also take it as it has also been studied for effectiveness in combatting flu and other respiratory illnesses.  It has been good for all of us, but yes, there are some who don't respond well to it.  Perhaps one or more of them will speak out and give you some information that will help you better determine NAC's suitability for your DS.

I, personally, am convinced that glutamate immodulation is a significant player in my DS's situation, though I realize there are a number of more primary culprits for others.  All the best to you as you work out the best path forward for your family.  I'm sure you'll find it.

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3 hours ago, MomWithOCDSon said:

Mama4 --

If you've searched threads on the glutamate topic here, then you've probably seen plenty of my posts in that regard.  We've never done Nutrahacker or any other gene testing to date with DS; we "lucked" and trialed-and-errored our way into effective treatment without it.  My introduction to the glutamate connection with PANDAs and anxiety behaviors in particular came via research conducted by Dr. Rothstein with respect to glutamate modulation in anxiety disorders and the glutamate modulating properties of beta lactam antibiotics.

I did some reading on a non-glutamate diet but honestly, given all the naturally occurring glutamates even in fruits and vegetables, it really did just appear to us, for our family and lifestyle at least, to be overly-restrictive.  We do, however, eat preservative-free and largely gluten free (rice and quinoa pastas rather than wheat, next to no bread, etc.), and that has been a positive for all of us in terms of weight and general inflammatory issues.

NAC has been a part of my entire family's supplement regimen for years now; DS takes the most given as he has the highest tendency toward anxiety, but DH and I also take it as it has also been studied for effectiveness in combatting flu and other respiratory illnesses.  It has been good for all of us, but yes, there are some who don't respond well to it.  Perhaps one or more of them will speak out and give you some information that will help you better determine NAC's suitability for your DS.

I, personally, am convinced that glutamate immodulation is a significant player in my DS's situation, though I realize there are a number of more primary culprits for others.  All the best to you as you work out the best path forward for your family.  I'm sure you'll find it.

Yes, I read your posts and they were very informative, thank you! It all kind of makes sense and I think it might be worth a try.  So hard to get a teen to not eat processed foods...I am so hesitant to try almost any supplements as DS has flared with Fish Oil, Vit D and probiotics (even strep-free ones) and we are supposed to be slowly introducing about 20 of them. I guess we can always give the charcoal is there is a negative reaction. Thanks again.

Edited by mama4

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Hmmm...this really has me thinking today. Our son was gf/df for years before his PANS diagnosis. The diet changes definitely helped with his early PANS flares in toddlerhood (which we didn't know were PANS then). Reintroduction of gluten and dairy in the past caused a major regression which was improved again by changing his diet. With such past success with diet changes, we followed the recommendation of the first DAN we consulted after our son received his diagnosis, to remove all grains. But in removing the grains we've found we've actually increased his intake of processed meat and vegan "dairy" products such and cheese and yogurt - major glutamate offenders. I've really struggled with giving him so much processed meats but with his diet so restricted otherwise we've needed some convenience foods. I've really questioned whether the meats etc are making him worse and just before reading this was contemplating removing or limiting them. After reading this I stumbled online to information on the REID Glutamate free diet.  I think I'm going to try it and see if it yeilds any positive results. May need to wait until school is out to jump in with both feet but I'll keep you posted on whether it has any positive impact. 

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My kids have been kinda-sorta REID for a while.  REID is more than just low glutamate but also targets meat consumption at 20% (I think) and lots of raw greens, vegetables etc...among other things.  Its super expensive to do this.   And like the posters above we found it super difficult to do, given all of other things they have given up, and it has a lot of social impacts on the kids.  We have made progress reducing free glutamates (REID does NOT worry about glutamates in vegetables, they are bound) We try not to have processed meats, e.g. use fresh pork sides and salt them afterwards.  They only drink raw milk.  We try to do lots of greens but mainly in the summer out of the garden (cost.).  No processed foods, which means we eat whole foods.  Very little sugar.  But I can say that we do see improvements.

To us the big question is their seasonal PANDAS spikes.  If we chart their symptoms they begin to increase in October and peak in December and then have another shorter spike in the March or April.  We used to think it was allergies but wonder if its something else like diet.  For example we used to let the kids do Halloween candy but noticed they  would be awful afterwards.

Edited by dasu

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I don't quite understand the in numbers and what they do but depending on what protein and anti stuff are the build up in the basil ganglia can cause different symptoms. DD's pandas doc. Said with the three d2, lyso & kam being out of range her tics and rage makes sense as does her reaction to ibuprofen, benadryl and pseud. Mitochondrial support supplements have greatly reduced her symptoms. The big one being out of control rage. From every day to once or twice in a month is a big improvement. No gluten and limited sugar.

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I don't pretend to understand it, but there seems to be a link between phosphatidylcholine and glutamate (where one inhibits some of the action of the other).  A search of this forum for posts with both these items comes up empty, so I am presuming that phosphatidylcholine as another possible antidote to "glutamate storms" has not been explored in this forum, though both are well-commented on separately.

I mention only because our PANS son had an improvement on a high dose (3000mg/day) of phosphatidylcholine over the last several months.  We trialed on and off it several times, and I posted some discussion and our results at the end of an old thread here:   http://latitudes.org/forums/topic/18965-phosphatidylcholine/#comment-186762 .

Edited by bobh

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20 hours ago, mama4 said:

Maybe ... if I wanted to do this test, I would find and read their 2015 study that they say was done with University of California San Francisco.  Check if it the university was paid to help them (like what big pharma does), or whether it was truly a transparent and peer-reviewed study.

Then, I would look up both the promoter detoxproject.org and MetricBio (the company that is actually doing the test) and their sister company TGen and see if they have any reports on quackwatch.com or other consumer advocate or review sites.  If they have a Wikipedia page, it might be biased, but I would still read it anyway (I feel the same way about quackwatch - not necessarily always on the money, but always full of referenceable info).

The fact that the kit costs $125 and that there are no government funding sources may be a red flag, about either a scam or government inaction on a crucial topic.

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