PANDAS symptoms, low amylose, low oxylate diet, cholestyromine treatments

[Guest guest]

Hello there I am sorry but I meant to answer someone's question about the low amylose diet and cholestyromine treatment and low oxylate diet helping stop my son's PANDAS symptoms.

My son was diagnosed with PANDAS at 14 which is a little old but we all know that PANDAS/PITANDS it's all the same and it's auto-immune. The symptoms we we're speaking of was the constant urge to urinate. I was asked if I thought the low amylose diet helped and I definitely do. In fact, we did not start the low oxylate till about a month or so later due to test results and Dr B had started on low amylose right away and I saw the constant urination disappear. It's a huge pain to do both but it's worth it. I do know some things that you cannot find online and there is a lot online that conflicts also so here's some tips about both.

On low amylose you can only use stevia an truvia but stevia is very high oxalate so when I do make some sugar free frosting for his coconut cupcakes (they are very tasty), I use splenda.

I do give him ezekial bread but not every day. IT has very little gluten so it's okay. I give organic corn chips even though there's just a little canola oil it's okay. He's allowd a few flours like quinoa so that's a good pasta he can have now and then. He mostly eats small, frequent meals like a diabetic so it makes sense that the "diabetic" type symptoms disappear. Lean meat and allowed veggess mostly with coconut oil in the veggees.

You try to do all organic everything but at least no hormone, no antibiotic meat and as much organic veggees and fruit but your choices are so limited if you can do organic produce, good, but if not, he has to eat.

Cholestyromine 3 - 4 times a day has also made a huge difference. Start slowly at 1/4 dosage maybe once a day or once every other day. After he got over the mild herxing, I could see dramatic improvements sometimes within 12 minutes of him drinking it. My son had horrible psychological symptoms.

This all has made a bid difference in all his past PANDAS/PITAND symptoms. At one time a year ago, had 14 of the 15 symptoms but now I don't think he has any. Debbie Gravois

-- Surfactants being used in dentistry to kill bacteria...

I just wanted to let you know about a meeting I had a couple of days ago w/a Dr & a Dentist (DDS). The Dr, having worked w/me & surfactants arranged a lunch for me with his DDS that has 3 children, the middle child (8yo) is non-verbal ASD...her 3rd child (almost 5 & in childfind preschool) is just coming out of a speech IEP. My 1st? upon meeting her is did she work on amalgam fillings while she was pregnant w/her children (answer yes...sigh..no guessing what some of her children's main issues are...mercury...I see this worse than living next to a crematorium where all the amalgams are being incinerated into the air as the body's are cremated.....rrrr). We met & went over things for almost 3 hours.....I gave her a copy of Dr Amy's Powerpoint & she's now on-board biomeds & told me her heart felt hope for the 1st time in many years.One of the many cool things that came out of the meeting is her excitement about surfactants. She had just come from special DDS training in surfactants as they are training dentists to now flush/clean out the bacteria in the roots of teeth using surfactants with root canals. She drew a picture of a tooth & explained the current protocol (uses chlorine) & the now newer, safer, better practice of using surfactants to clean out the bacteria when doing a root canal. She is excited to be our newest member in our WA biomed group...we have teachers & other moms…but we have an interesting dynamic of allopathic moms (dentist, pediatrician & 2 RN's)...all mom's full board into biomeds & seeing a difference with surfactants (Immusist)…never would have guessed this kind of diversity would work together to help our kids.Just thought this was So Cool!Rita

[Guest guest]

Hey there Krassi,

Yes that is very frustrating I saw that too with both diets there's conflicting information online. It makes me think sometimes that Dr B may be wrong about some things that she allows honestly but what she has on has definitely STOPPED the frequent urination.

I can see one thing that may be causing the frequent urination is the bananas that you son is eating a lot of. DR B stopped the bananas right away in fact, before we did low oxalate, her instructions were that he could have any fruit EXCEPT bananas due to their sugar content. He is allowed melons. I don't do much pineapple because I just personally know how sweet that is and I figure if it's really bad for diabetics, don't eat it.

Does your son drink fruit juice? I would stop it. is allowed only 4-6 ounces plain organic but that's so little so I don't bother with it. No rice or Potatoes on low amylose. Yes it's tough when you go low oxylate also. I did read no quinona like you on low oxylate but asked and Dr B maintains that quinoa has zero oxylates. Now she also says can have spelt but I ignored that because I know he cannot have wheat so I just did not re-question her. As far as a grain, I give him some ezekial bread ( it has very little gluten) and he eats a lot of corn and that's fairly filling so he just doesn't do much grain. Dr. B likes corn because she believes it's very low amylose and does not effect you like sugar so he eats corn, corn tortillas, and baked organic corn chips and I sometimes give him organic salsa. The only restaurant food he has eaten in two months is Mexican and I know it's not organic but it is very infrequent.

NOthing that grows under ground, except for garlic and onions on low amylose. Actually, as far as the quinoa I will tell you that I don't fix it often. He maybe gets it once a week at most. eats smaller, frequent meals like a diabetic. For a sweetener, we started with only stevia but that 's high oxylate so if on occasion I want to make him something sweet I use splenda. She says either is fine.

I would be happy to get you the list Dr b sends out but it's very similar to one of the lists you find online. Would you like both her lists? I'm sorry I'm not very handy with looking for attachments but I can get it to you tomorrow if you like. Please e mail me directly, Debbie

-- Surfactants being used in> dentistry to kill bacteria...> > > I just wanted to let you know about a meeting I had a couple of days ago w/a> Dr & a Dentist (DDS). The Dr, having worked w/me & surfactants arranged a> lunch for me with his DDS that has 3 children, the middle child (8yo) is> non-verbal ASD...her 3rd child (almost 5 & in childfind preschool) is just> coming out of a speech IEP. My 1st? upon meeting her is did she work on> amalgam fillings while she was pregnant w/her children (answer yes...sigh.> no guessing what some of her children's main issues are...mercury...I see> this worse than living next to a crematorium where all the amalgams are> being incinerated into the air as the body's are cremated.....rrrr). We met> & went over things for almost 3 hours.....I gave her a copy of Dr Amy's> Powerpoint & she's now on-board biomeds & told me her heart felt hope for> the 1st time in many years.> One of the many cool things that came out of the meeting is her excitement> about surfactants. She had just come from special DDS training in> surfactants as they are training dentists to now flush/clean out the> bacteria in the roots of teeth using surfactants with root canals. She drew> a picture of a tooth & explained the current protocol (uses chlorine) & the> now newer, safer, better practice of using surfactants to clean out the> bacteria when doing a root canal. She is excited to be our newest member in> our WA biomed group...we have teachers & other moms…but we have an> interesting dynamic of allopathic moms (dentist, pediatrician & 2 RN's)..> all mom's full board into biomeds & seeing a difference with surfactants> (Immusist)…never would have guessed this kind of diversity would work> together to help our kids.> Just thought this was So Cool!> Rita>