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Hi Pat, I hear you--The body/brain is an amazing system and I agree that it is many times trial and error, sure has been for us this year. We too have been boosting immune issues the best we can -- (vit. C, vit. D, super omegas, immune supplements, probiotics, kefir, all thanks to the suggestions of others--my thought is it could only help the recovery on her system.)

 

Sometimes I feel like listening to what is working for others helps me to reflect on the question of "what else" could we do. Lord knows that is how we ended up doing long term antibiotics this spring, and my daughter is back. It may not work for all, on this forum we are dealing with a myriad of issues, but it does help to hear and listen to what has worked for each other--Thankfully.

All the Best,

T.Mom

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Hi All--

 

I wanted to add a bit on inflammation and immunity quickly. Clare wrote a few years ago about OAT testing results and food intolerances/avoidances in a thread. I latched on to the latter but only recently discovered the former. The group used a specific diet and supplement regime and many saw significant improvement. GFCF was part of the protocol for the majority. In the OAT thread the group found that what they had in common was low glutathione levels. This means poor liver function and poor liver function means poor immunity. I didn't uncover that thread until much later. It makes so much sense to me now, especially after all that Carolyn.N has done with her son (who never went on a food avoidance diet like GFCF but only does all natural non-chemical foods-- with many instances where she has allowed him to wander (aside from MSG). She uses n-acetyl cysteine, a supp that helps increase glutathione levels and thus boosts liver function and the immune system. When the immune system is under stress it begins to break down and disease sets in. This is when organisms begin to thrive and allergies/intolerances develop and multiply. So some of you may not have food allergies/intolerances..... YET, as the disease state that would cause it (yeast, clostridia) has not yet emerged as a problem-- as Pat states.

 

As far as inflammation goes, there is a whole host of information out there about anti-inflammatory foods/diets/supplements. There is much info about it. Sugar, especially refined sugar, is particularly damaging and is 'food' for yeast.

 

I agree with Pat on the issue of antibiotics and IVIG. Each parent has to make the decision when the need arises to do what is in the best interest for their child and in some cases that means antibiotics and/or IVIG.

 

Caryn

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In a recent post by Chemar she cites an article which talks about the importance of serotonin and it states that 90% is produced in the gut. No wonder that if the gut is not functioning properly, that it decreases it's production - which leads to the sleep disorders, aggressive behaviors, emotional lability that we see in our kids. On the box of the kefir grains that I ordered it states that beneficial flora promotes the conversion of tryptophan into serotonin. It also helps the absorption of nutrients and vitamins. It's possible that prior to giving the kefir to Gaby, her body wasn't even utilizing all the extra vitamins I was giving her.

 

There was a study done in 2008 at the University of Taiwan on effects of kefir on cytokine production and what I found particularly interesting is this: that kefir influenced the secretion of pro-inflammatory cytokines TNF-a and IL-6 through TLF-2 which promotes cell-mediated immune response against intracellular pathogenic infections. I'm wondering if that might mean that it could fight intracellular strep (which many antibiotics have trouble getting to)?

 

By the way, since I've started all this about 3 weeks ago, Gaby is now on day 10 of a wonderful mood - smiling, happy, and the only odd behaviors I've seen during these few days where she has been congested with this cold is that she mentioned a couple of times seeing some spots in front of her eyes and a couple of days where she asked me once or twice for reassurance "so I'm not ugly?". Previously she had obsessed about that many times on a daily basis. I hope I'm not premature in saying that this is really working for her, but I'll keep you all posted. Pat

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Check this out:

 

http://www.nids.net/nidsbackground.htm

 

 

Even mainstream (non DAN docs) are getting on the bandwagon now and are realizing what's going on. Apparently NIDS encompasses PANDAS, PITANDS, autism, ADD and a myriad of other autoimmune diseases that people have always called "developmental issues".

 

Although this group (NIDS proponents) seem to look more to pharmaceutical cures rather than natural - they are discovering the same thing that many of us here already know - that the immune dysregulation is what causes the problem and, therefore, in my opinion - the answer is to fix the place that houses the immune system (the GUT). Since we've started the kefir, along with other broad spectrum probiotics, Gaby is now on day 12 of very normal behaviors (minor irritability very occasionally, but no outbursts). Even other people have remarked how mellow she is these days - and how happy.

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It's possible that prior to giving the kefir to Gaby, her body wasn't even utilizing all the extra vitamins I was giving her.

 

Same phenomena here. I was giving HUGE megadoses to ds in the beginning and they were helping but he still had symptoms. It wasn't until we were a few months into the new diet that I began to notice those same doses were now making him sick and he was getting 'overdosed' by them.

 

Now he is on much lower RDA doses of vits and has no symptoms. I attribute it to a proper diet and daily kefir too. His gut is healed now too, and that has a lot to do with it.

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Caryn and Pat,

Could you both please tell me how much kefir you give your children? I have started goat milk kefir for the family and have no idea if there is a correct amout to give. The bottle says serving size 1 cup. I was just wondering how much you are using per person.

 

Thanks, Anne

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Anne,

 

We started with at least a cup a day, spread out. I have reduced it down to about 1/2 cup a day now. I don't measure anymore. I mix it in a breakfast smoothie. My four year old loves to drink it in a shot glass. I buy only the plain kefir. I do a blended drink every morning. The favorite mix is: mango chunks from Trader Joe's, a ripe banana, some fresh squeezed orange juice, kefir and blend on high. I will often add the B vits to the smoothie. After it is all well blended I add raw egg whites to it (pasteurized-- no salmonella) and blend on low so it doesn't froth up.

 

The whole family drinks them and loves them. They are pretty filling too and keep ds from getting hungry before lunch (he also eats breakfast too).

 

If you need to avoid dairy you can use Kombacha. I actually found it at Whole Foods. Some folks make it at home. It takes 30 days to ferment. It is great for digestion and includes probiotics too. (Made from tea rather than milk).

 

Caryn

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Caryn and Pat,

Could you both please tell me how much kefir you give your children? I have started goat milk kefir for the family and have no idea if there is a correct amout to give. The bottle says serving size 1 cup. I was just wondering how much you are using per person.

 

Thanks, Anne

 

 

I, too, mix it in with a smoothie for breakfast. I usually use a good size glass of it and then add fresh pineapple, a really ripe banana and rice milk, plus a half of an avocado (avocado has some wonderful benefits). Then I might give her another glass straight in the afternoon. I also use just the plain unflavored - she doesn't mind it, although it is sour. I've read that some people drink it with every meal, so I don't think that you can take too much, it's just that it's pretty expensive and so that would limit us from drinking it all day long. As far as establishing a good colony of bacteria, it takes several months. Although I have seen some really good changes in Gaby, ( her tutor said that within this last week she has seen some real improvements in her concentration level when reading), I don't expect that it will do major work on her immune system that fast - it will probably take several months.Pat

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And then there is my son who was on a gluten-free diet (also casein, corn, and soy-free) as well as antifungals, probiotics and glutathione for years before PANDAS knocked him out. We also feel it's not just PANDAS, but could be PITAND for him as any infection seems to trigger this, not just strep. Pat - we haven't tried Kefir as I asssumed it was out based on casein and he's got a coconut sensitivity as well. I will look into it. Maybe it's time to change his probiotics as well.

I'm so frustrated by all of this (as I know you all are) and just want to figure it out. We've been treating his gut for years and all the other underlying problems we've uncovered, antibiotics clearly make a difference, and the IVIG is obviously bringing the inflammation down; but it's only temporary. I want to get at the root of what's causing the inflammation in the first place so I can help my son and stop medicating him so much. Argh!

 

Thanks for the suggestion.

 

Jena

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And then there is my son who was on a gluten-free diet (also casein, corn, and soy-free) as well as antifungals, probiotics and glutathione for years before PANDAS knocked him out. We also feel it's not just PANDAS, but could be PITAND for him as any infection seems to trigger this, not just strep. Pat - we haven't tried Kefir as I asssumed it was out based on casein and he's got a coconut sensitivity as well. I will look into it. Maybe it's time to change his probiotics as well.

I'm so frustrated by all of this (as I know you all are) and just want to figure it out. We've been treating his gut for years and all the other underlying problems we've uncovered, antibiotics clearly make a difference, and the IVIG is obviously bringing the inflammation down; but it's only temporary. I want to get at the root of what's causing the inflammation in the first place so I can help my son and stop medicating him so much. Argh!

 

Thanks for the suggestion.

 

Jena

 

Jena, it sounds like you've been giving a lot of different things for a long time, and even probiotics if you give too much of one kind can cause some kind of imbalance. The balance has to be as close to what is naturally found in the gut and from what I've read, the bacteria found in food stuffs is superior to that which they take in capsule form. This is why I'm so stuck on this kefir thing - and because goat milk is casein free, it makes sense to use that. I'm going to look for that study I read about Kefir bacteria's ability to subdue intracellular pathogens and I'll post it when I find it. Pat

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OKay where can you get some? Publix any chance? Also what does it taste like and what is it....a creamy sauce or something??

 

Never heard of it LOL

 

What can you mix it in if it tastes really bad.....

 

Lastly, can one benefit from it with just using it alone and no other supplements etc....

 

Will it interfere with other things like supplements???

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OKay where can you get some? Publix any chance? Also what does it taste like and what is it....a creamy sauce or something??

 

Never heard of it LOL

 

What can you mix it in if it tastes really bad.....

 

Lastly, can one benefit from it with just using it alone and no other supplements etc....

 

Will it interfere with other things like supplements???

 

My kids hate it and so far I can't find anything I can hide it in that would get them enough daily. I wish there was a pill that offered the same benefit! We got ours from the healthfood store. It comes in different flavors. I've tried many so far and no luck. I LOVED it as a kid.

 

Susan

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