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PANDAS and sugar


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A researcher here is saying that glucose increases strep growth in the mouth, so he's recommending no sucrose, no fructose - to remove sugar from the diet, including juice. And that it's important to alkalise.

 

Just thought I would pass it on fyi.

Edited by Ozimum
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OMG, Before we had even heard the word, Pandas, we stopped. Giving. Gluten and sugar to our DD15. Because we read that diet could have a big effect on Autism symptoms. DD15 was full tilt having multiple.rage episodes a day after having them for three months. Mom was at the breaking point, we were absolutely desperate and clueless! As soon as i read back diet to mom, she immediately connected hot chocolate to the rage episodes. The first week the rage episodes stopped. Let me say that again. "The first week week, of no gluten, no sugar the rage episodes stopped. We still dont have understanding of the complex issues or if DD15 actually has PANS but she definitely has the symptoms and when, i fill in the forms, i use most of the lines. But I can say there is a connection between sugar, because when DD15 even got juice or an apple there was a reaction. We were not aware of strep at the time, so i cant say if the sugar was a type of catalyst or something else but that is what my best guess is from what i have been exposed to so far.

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could there be a more direct connection btw sugar and rage? not via strep or yeast. gut bacteria feed on it.

is there something else?

how about hypoglicemia? it would explain the rage.

Edited by pr40
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My ds sems to react fairly instantly and negatively to sugar. I used to think it was yeast (he is yeasty) but felt it was too quick....

 

I'm now wondering if it could be something along these lines, made worse by an inefficient insulin response.. dunno.. thought it was interesting tho....

 

"But over the last 20 years, we've come up with a whole bunch of different ways to sneak around the Blood Brain Barrier, and deliver drugs into the brain.

One method involves squirting way too much sugar into the blood stream. Any excess of sugar will normally be mopped up pretty rapidly by the body's insulin system. But in the meantime, the sugar sucks water out of the endothelial cells, and makes them shrivel. And so, in the brain, the tight junctions between the flat endothelial cells that make up the blood vessels will open up - but only for about 20 minutes. It's not a long time, but this allows you to increase the amount of drugs that get across the Blood Brain Barrier by ten or even 100 times"

 

from this article

 

http://www.abc.net.au/science/articles/2003/12/11/996860.htm

 

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OMG! "Sugar" ("Does this have sugar in it?") was my dd's huge OCD fear (along with fear of weight gain--"Will this make me weight more than 50 pounds?") when my dd's PANDAS was severe (in 2008). It morphed into full blown anorexia nervosa (complete with 20% weight loss, off the charts for her age/height since she was slender to start with) and distorted body image. I can pretty much guarantee that she didn't have any sugar at that point (well, she wasn't really eating much of anything, but esp not sugar.)

 

I just can't go there with saying "no sugar" now...everything in moderation!

 

I would also be careful about telling your kids "no sugar" in case that message turns into a form of OCD.

 

I should note that I never was a parent to say "no sugar" or obsess or talk about it much...about all I did (aside from trying not to buy a lot of junk in the first place) was ask that my kids brush their teeth after something sweet. The intense OCD fear of sugar seemed to stem from a scholastic healthy eating handout (on sugar, and it's content in various foods) from school. We found it stuffed in her backpack 1-2 mo after pandas symptoms first started.

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Eamom you just freaked me out. I am the no sugar mom. I hate all holidays! Yeah Easter bunny! I do give them certain treats and dd is the one that reacts right away!! A couple packs of Annie bunnies for dd ( like fruit snacks) and dd is wired!! I swear when these kids leave my house they are going to go on a sugar craze and who knows what will happen!!!! Sugar is a huge issue here!! Don't get me wrong they get there treats now but i do see bad side effects always!! Ds who is older now will be like she is going crazy from sugar!! Not that he is one to talk but dd is horrible!!!! Like when I limited her sugar intake bc of ds when she was 4-5 she was on the ground kicking and screaming!!! I hope I am not cursing them but I know it's just bad!!

Mar

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I often wonder about sugar, but with DS14's BM fears, he has a very limited list if food he eats and a lot if it is sugar and gluten rich. Right now I'm just happy when he eats anything. He's always been a picky eater, but now he tries to "hold it in" : (

 

Yesterday he went to the bathroom for 4 hours (hadn't gone since Monday).

 

T.Anna

DS 14

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My ds sems to react fairly instantly and negatively to sugar. I used to think it was yeast (he is yeasty) but felt it was too quick....

 

I'm now wondering if it could be something along these lines, made worse by an inefficient insulin response.. dunno.. thought it was interesting tho....

 

"But over the last 20 years, we've come up with a whole bunch of different ways to sneak around the Blood Brain Barrier, and deliver drugs into the brain.

One method involves squirting way too much sugar into the blood stream. Any excess of sugar will normally be mopped up pretty rapidly by the body's insulin system. But in the meantime, the sugar sucks water out of the endothelial cells, and makes them shrivel. And so, in the brain, the tight junctions between the flat endothelial cells that make up the blood vessels will open up - but only for about 20 minutes. It's not a long time, but this allows you to increase the amount of drugs that get across the Blood Brain Barrier by ten or even 100 times"

 

from this article

 

http://www.abc.net.au/science/articles/2003/12/11/996860.htm

 

Karl is an awsome writer.

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  • 2 weeks later...

Okay. My curiosity is piqued. My daughter was doing so much better after taking doxy and we were living the dream for about a week here. To the point that she actually was eating like a normal 16 yr old girl. For the past two nights, she made a parfait of strawberry yogurt layered with graham cracker crumbs and fresh (finally in season) strawberries. We were thrilled becasue she has been battling eating disorder since a bad bout of flu in December and has been restricting all sugar.. Today she is back to edgy and ragy and body image obsession. Is it possible that all the sugar from her 'parfait' is allowing the doxy to cross the BBB and is hitting mycoplasm in her brain? She acts very 'herxy' today like she did at the beginning of the doxycycline. Could this be possible?

Btw, 4Nikki, depending on the genetics, it could be the methyl donors causing a problem in addition to the strep. My kid is COMT++ and cannot handle chocolate and caffeine because they are methyl donors. In some cases, it is not the sugar as much as the chocolate, caffeine, and certain additives. We even have to be careful of melatonin, curcumin, zinc, theonine, and methylcobalamin..all methyl donors. The body is just a big ole chemistry set!

QueenMother

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Now I'm overwhelmed again. I never had chemistry. So google will be my buddy in bed again. DD's Mom is gonna think I'm ignoring her again. She gonna take away my phone. Don't get me wrong, I really apreciate the feedback. DD just had 6 vials of blood taken yesterday morning out for tests. PB says we will know on Friday. We were supposted to get some recommendation from UCLA but had to reschedule. So we are setback a few weeks not on making a plan. (sigh...) Doctor's should never be allowed to go on vacation. ;)

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