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Diet


CSP

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All,

 

I have been wanting to ask a question about diet and the PANDAS/PITANDS.

 

I was wondering what kind of diet do most of you all follow? Do you have results with a clean diet. I ask because I feel some have sad setbacks and it sounds so much like my son for the 2 out of the 4 years that he has been DX tourettes.

 

I feel just because my son has TS dx I'm not ruling out PITANDS, and I feel I have been through with my son some of the same setbacks your PANDAS children are going through.

 

My son has been on a very clean diet with only Subway as a (need something quick fix) in the not so clean diet. He still tics and can have a bad mood now and then but for the most part he is doing good.

 

So my question is... do you all just do standard treatment for PANDAS, and let them eat what they always ate before the PANDAS dx. Or do you all also do diet changes to see if that helps at all with you child?

 

CP

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My boys are on a gluten and casein free diet. It really helped my 2 year old overcome some early signs of autism, but it has NOT helped my 5 year old with PANDAS at all. They are also on an all-natural diet, no additives, etc. I try to buy many things organic and I am trying to replace things like beef with fish, etc. The hard thing is that with PANDAS, the household becomes so debilitated that sometimes focusing on dietary intervention becomes an impossiblity! We are lucky to survive some days with the severe tantrums, meltdowns, etc.

 

To be honest I am thinking about stopping the GFCF diet so that we can have a little more flexibility. I just don't know how that would impact my 2 year old...

 

Stephanie

 

All,

 

I have been wanting to ask a question about diet and the PANDAS/PITANDS.

 

I was wondering what kind of diet do most of you all follow? Do you have results with a clean diet. I ask because I feel some have sad setbacks and it sounds so much like my son for the 2 out of the 4 years that he has been DX tourettes.

 

I feel just because my son has TS dx I'm not ruling out PITANDS, and I feel I have been through with my son some of the same setbacks your PANDAS children are going through.

 

My son has been on a very clean diet with only Subway as a (need something quick fix) in the not so clean diet. He still tics and can have a bad mood now and then but for the most part he is doing good.

 

So my question is... do you all just do standard treatment for PANDAS, and let them eat what they always ate before the PANDAS dx. Or do you all also do diet changes to see if that helps at all with you child?

 

CP

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We have such a big family here ( 7 kids including two sets of twins) that it is really hard and expensive for us to follow an organic diet. After 9 y/o IVIG- we followed Dr K's recommendation of high tryptophan foods for better sleeping and supplements ( fish oil, ester c , etc) .

We only eat fresh veggies and fruit and buy a cow and pig from local farmer ( natural fed) for meat. We don't do sugar supplements, or anything with aspartame in it, we don't do junk snacks etc either. Sometimes I am also appalled by what they are given to eat at school ) :

I know this isn't a high tech diet but I am just so worn down I just do the best we can and this is what that is for us ( :

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Gluten free diet here but it's because they are gluten intolerant. It does help with the pandas symptoms though. I would really like to clean up our diet more, I'm sure it would help to do less dairy and sugar.

 

susan

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We have dramatically cut out food dyes, high fructose corn syrup, eat organic when we can and when the price is reasonable. I do buy all organic fruit and veggies and dry goods when on sale. My PANDAS son kind of cut out milk on his own with only maybe one glass a week. I say we have a much cleaner diet than ever before. I admit, not always perfect, but much much cleaner.

 

I read above about aspartame. We have never eaten that or Splenda. Read your lables on that one. They hide it in ingredients. They often will put aspartame in multi vitamins!

Edited by Vickie
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They often will put aspartame in multi vitamins!

 

aspartame and splenda may also be in abx!!

 

when my son was first presenting symptoms, we went to a naturopath who did a food igg test on him. he was highly reactive to over 15 foods - all dairy, most grains. we immediately took him off those foods. that was about 15 months ago. unfortunately, we also started a month of keflex at close to the same time.

he had a return to 100% prepandas in about 3 days of the keflex. i've always credited the keflex, not the diet changes.

 

we also consulted two traditional allergists. they put no weight in that type of test. yes, they agree his immune system is producing antibodies against those foods but "so what" - direct quote - it's not creating any symptoms. really? common sense dictates to me that if i'm concerned his immune system is acting screwy, i don't want to further engage it.

 

after he was off those foods, i realized he'd been limiting milk. a week or so into it, he said, "i don't want to eat anything i'm allergic to." on some level, i think at age 4, he realized something was going on.

 

that said, i don't believe the diet changes have made any significant differences for him in his behavior. he's had good times with this restricted eating and exacerbations. he does have a 'healthy' friend at school whose mother just told me she cut out food dyes b/c she thought her daughter was overly sensitive and emotional and she has seen a positive result. there's an MD in baltimore that has a great quote on his website - something like he can't cite any scientific evidence that gluten and casein can cause behavioral problems but has hundreds of parents who swear there is a difference from their children not eating them.

 

i keep him on this diet b/c i believe his immune system is not reacting properly and am trying to not further engage autoimmune reactions- not b/c i see any measurable difference in behavior due to the food restrictions.

 

someone posted an article on this forum that proposed an idea that an enzyme necessary for the digestion of gluten and dairy also binds with strep in the gut. i think it could certainly be a possibility.

 

i don't buy high fructose corn syrup and hydrogenated oils but I don't restrict them from eating them at other's houses, sports snacks etc.

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not to hijack this thread but hopefully add some to it: what are some of you guys having your kids drink?? That has been my toughy to find, we don't do pop or caffeine, but keep waterbottles but they like it flavored- and my husband swears that koolaid (Not the sugarfree) is better than the sugarfree taste packets of just about any brand beings almost all have aspartame.

Too much juice and my kids get diarrhea ----so what else is there really??

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7Upmom - drinks are hard here too... My kids like fresh lemon or lime with ice water... it gives some flavor to it - and no chemicals :)

 

Interesting side note my DD7 who loves water (plain) told me 2weeks ago she no longer likes water - hmmm so I have no idea what she will drink this summer.... I hope it is a passing non-PANDAS thing and doesnt stick around long...

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For now we also are just trying to be as "clean" as possible. We cut out as much "fake" food as we can. I've been focusing on preparing whole natural foods with more vegetables and fewer grains. Ideally I would like to eating more salmon, but so far I just haven't been very good at preparing it so that it tastes very good.

 

I do notice a difference in DS's behavior when he has had junk, especially dyes and nitrates. He struggles with wanting to feel better and wanting to be "normal", though we keep talking about the fact that what seems normal now is anything but!

 

We keep saying we are all going to go dairy free for about 3 weeks to see if it helps any of us. I suspect each of us is reacting to dairy in a different way. It is so hard though! I just need to buckle down and do it! Then we would know if it was causing any reactions.

 

One place I am failing miserably and feeling guilty about is school lunch. We've always just done it because it was easier, though I've never felt especially good about it. I just can't manage to get lunches made, and feel really frustrated with thing coming home un-eaten. One more thing I just need to quit thinking about and worrying over and JUST DO IT!!!

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