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BIG food changes (and short update on us)


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We are starting a new diet for Pixie, starting tomorrow (gulp! :unsure: )

 

Recommended by her Nutrition Response Therapist.

 

NO grains or wheat. We can do rice and corn if we MUST, but she is responding to yeast/mold/fungus, so eliminating these is supposed to also help with those issues.

 

We can do nuts except almonds (b/c of salicylates) and peanuts and cashews both harbor mold.

 

No white sugar, honey, etc. She recommended Agave, but I read that that is really awful for the liver and processed like crazy, which makes it essentially HFCS, so we will stick with xylitol in TINY amounts if needed. I'm also not completely adverse to honey since it's natural, but I know that we are trying not to feed the yeast, so I get that aspect.

 

She wanted us to cut out ALL dairy except for butter, but then she heard that we only buy local, organic, grass-fed, raw cheese and said we can do that in moderation. I'm planning to use some organic whey that I separate myself as well (she said yogurt is out) because we do try to eat traditionally as well b/c of Pixie's being part Native American and tooth issues that we have (lack of enamel.)

 

I've stocked up on a lot of organic coconut milk, nuts, and local grass-fed meats, eggs, and produce (mostly veg since fruits are high in sugar.)

 

This is going to be quite a journey!!! We cleaned out the pantry and have to do the freezer tomorrow (I posted it all on Freecycle and a single mom is coming to get it all...) and have been frequenting all kinds of food blogs and websites. Dan is taking a leave of absence for 4-6 weeks while we do this and all of the needed tests, etc for other immuno issues that we can now do since we are 4+ months out from IVIG. We're going to try to do a lot of cooking and freezing. (If I wasn't clear, we are ALL doing the diet along with Pixie.)

 

AND last, but not least, we would love your input about any foods your kids like or recipes that meet our criteria. Dan helped me set up a blog to document our journey and add recipes that work for us. If you are interested, it is here:

http://chickiepea.wordpress.com/

 

 

Things have been busy lately, but Pixie is mostly stable. We are still seeing a shorter fuse than we would like, occasional turning of the pages, some repetitive OCD-like things (mild), some handwriting fluctuations, fevers sporadically, pupil dilation, and lots of sensory issues. However, for the most part (and to the outside world) she can function now. She has even, over the past 3 weeks, been able to go for an hour and play a computer game alone or do 10 minutes in her room alone- which is a DRASTIC change!! We have been doing the Nutrition Response Therapy for about that long and I attribute it to that.

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i know it is hard and extreme. . . but having gone gluten-free, egg-free, dairy-free 'cold turkey' - i would say that's the best way to do it. that first month is a blur and my kids ate many boxes of rice chex b/c they were carb-aholics before but you do get used to it and find ways to work with it.

 

good luck!

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Yowza!! That's a lot but you can do it. We are glutren free and have done gluten/casien in the past. Gluten free has made a huge difference in our lives. I'm sure if I cleaned up our act even more we'd see an even better improvement. Good luck and keep us posted.

 

Susan

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Agave is always praised by people on the no-GMO sites and Natural News. I've never tried it nor did I ever research it. I'm surprised it ends up being HFCS-like.

 

If she likes pasta, I hae seen rice pasta even at Walmart. That would be a treat now and then since you're limiting rice as well. Actually, they have corn pasta too.

 

So is soy out?

 

Good luck with this and thanks for the update!

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We did the scd diet for awhile. My son ate a lot of spaghetti (although tomatoes may be out with a salicylate issue). He would eat spaghetti squash, the rice pasta or the quinoa pasta. The quinoa was the best consistency, in my opinion. Also, if you buy a nut flour, you can make fried or baked chicken nuggets. There are good options but it is time consuming. I got a lot of recipes from pecanbread.com. Good luck!!

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This will be interesting to find out how it goes. I'm thinking of going on this same diet... along with foods that are anti-fungal. I guess it's all tied together. My son (12 yrs old) is thinking he might go on it too. His vocal tics/OCD isn't severe but he said anything that can help. We'll see.. 'cause he loves his fastfood. He's 5'9 at 120 lbs and never gains weight. Now at this age I think I'll have a big struggle in getting him to change but he says he'll try it. Crossing my fingers that everything turns out fine for your daughter. Lots of strength for you and your husband.

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We've done gluten/dairy/sugar free several different times. I would recommend cook books by Carol Fenster - My favorite is 1,000 Gluten-Free Recipes. She does use dairy, but we just use a non-dairy sub. The book gives us lots of ideas and the recipes are like "normal" food. It is a big adjustment, but after a few weeks you will find favorite recipes and you will get into a routine. Good luck!

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Hi Pixismommy,

 

I am wondering if you had testing to determine sensitivities or just just going for the healing diet approach. We went to decreased gluten with dd since October. Though I noticed a huge difference in my body, no change for dd17Pandas. I am considering getting Great Plains lab food allergy testing with IGG and IGE to really target the foods that are an issue rather than paint with such a broad brush. Such a diet will be most difficult for my kids age unless they buy into it (and they don't). They are independent, driving etc. We don't have junk in our house, but certainly have grains, rice, fruit, cheese etc.

 

Thanks,

 

Ellie

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Things have been busy lately, but Pixie is mostly stable. We are still seeing a shorter fuse than we would like, occasional turning of the pages, some repetitive OCD-like things (mild), some handwriting fluctuations, fevers sporadically, pupil dilation, and lots of sensory issues. However, for the most part (and to the outside world) she can function now. She has even, over the past 3 weeks, been able to go for an hour and play a computer game alone or do 10 minutes in her room alone- which is a DRASTIC change!! We have been doing the Nutrition Response Therapy for about that long and I attribute it to that.

 

Hey, also wanted to say 10.gif . This is great news about Pixie. I am so happy for you. You guys are doing a great job!

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I'm really sorry...this is all very new to me and I just happened upon the discussion about foods. Can someone tell me the reason why you are changing your child's eating habits. My 5 year old son just started with extreme OCD/anxiety symptoms in December after exposure to strep and he is going to start a clinical trial with Dr. T Murphy with the Rothman Center in St. Petersburg, FL in February.

 

We saw his primary care doc. yesterday and he suggested doing an elimination diet of all milk products, artificially colored foods, and foods with refined sugars. I think this stemmed from the fact that all during the visit, he was rolling on the floor, standing on his head and having difficulty focusing at all. He didn't really do this prior to December. He said it wouldn't hurt to eliminate these things from his diet to see if it would improve his behavior.

 

Is it all related???? Ugh. I just feel clueless and like I have missed or neglected things as a parent. When he was two, he received allergy tests and it came back extremely high for alterneria alternata (fruit and vegetable molds), dog dander, moderate for egg whites and walnuts, and low for wheat and milk. At the time, his doc. said there was no reason to avoid wheat and milk because he didn't seem to have a reaction to it. I've never put it all together and wondered if anyone can give me some insights based on your experiences with PANDAS. I just want to know what on earth is going on! I think I have logged about 20 instances in a one hour period that he has asked permission (I don't know why and keep telling him he doesn't have to ask) to pick his fingers, toes or rub them. Is this part of it too?

 

Thanks to anyone who can help with this!

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I'm really sorry...this is all very new to me and I just happened upon the discussion about foods. Can someone tell me the reason why you are changing your child's eating habits. My 5 year old son just started with extreme OCD/anxiety symptoms in December after exposure to strep and he is going to start a clinical trial with Dr. T Murphy with the Rothman Center in St. Petersburg, FL in February.

 

We saw his primary care doc. yesterday and he suggested doing an elimination diet of all milk products, artificially colored foods, and foods with refined sugars. I think this stemmed from the fact that all during the visit, he was rolling on the floor, standing on his head and having difficulty focusing at all. He didn't really do this prior to December. He said it wouldn't hurt to eliminate these things from his diet to see if it would improve his behavior.

 

Is it all related???? Ugh. I just feel clueless and like I have missed or neglected things as a parent. When he was two, he received allergy tests and it came back extremely high for alterneria alternata (fruit and vegetable molds), dog dander, moderate for egg whites and walnuts, and low for wheat and milk. At the time, his doc. said there was no reason to avoid wheat and milk because he didn't seem to have a reaction to it. I've never put it all together and wondered if anyone can give me some insights based on your experiences with PANDAS. I just want to know what on earth is going on! I think I have logged about 20 instances in a one hour period that he has asked permission (I don't know why and keep telling him he doesn't have to ask) to pick his fingers, toes or rub them. Is this part of it too?

 

Thanks to anyone who can help with this!

 

Here's a bit of our history,

 

dd7 has a history of absent staring seizures, short stature, tummy and bowel trouble and behavior trouble. We started seeing a Dan! (Defeat Autism Now) doctor because she had a lot of issues seen in children with autism. The DAN! protocol includes gluten and casien free diets because many people find that behavior and physical issues will often get better. When we went gluten free, my dd's seizures went away, tummy and bowel trouble cleared up, she started growing and she was better behaved.

 

My dd8 went gluten free and her skin (itchy, eczema, etc.) cleared up 100% and she became less angry and better behaved.

 

This was all before learning about PANDAS. We also found out that they did test positive for gluten intolerance but regardless of that, it is believed that even if they did not, that gluten free can still help with a lot of this stuff.

 

Wheat for one causes inflammation in the body just by nature of the grain. Removing it can reduce inflammation and cause less pain or other symptoms that may be related to it.

 

Somehow I think that PANDAS and autism are related and following some of the protocol's for autistic children can also help our children. I'm sure others will have more info than I have but this is where we were coming from when we started gluten free.

 

Just as a side note....I since learned I'm allergic to wheat so I don't eat it any more either and my skin allergies and itchiness went completely away too.

 

Susan

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For anyone doing special diets, it can be helpful to tag various foods with colored stickers to make it clear which foods are always okay, never okay, and sometimes okay. Red for no, green for yes, and yellow for sometimes has worked very well in our house.

 

Ellen

 

 

We are starting a new diet for Pixie, starting tomorrow (gulp! :huh: )

 

Recommended by her Nutrition Response Therapist.

 

NO grains or wheat. We can do rice and corn if we MUST, but she is responding to yeast/mold/fungus, so eliminating these is supposed to also help with those issues.

 

We can do nuts except almonds (b/c of salicylates) and peanuts and cashews both harbor mold.

 

No white sugar, honey, etc. She recommended Agave, but I read that that is really awful for the liver and processed like crazy, which makes it essentially HFCS, so we will stick with xylitol in TINY amounts if needed. I'm also not completely adverse to honey since it's natural, but I know that we are trying not to feed the yeast, so I get that aspect.

 

She wanted us to cut out ALL dairy except for butter, but then she heard that we only buy local, organic, grass-fed, raw cheese and said we can do that in moderation. I'm planning to use some organic whey that I separate myself as well (she said yogurt is out) because we do try to eat traditionally as well b/c of Pixie's being part Native American and tooth issues that we have (lack of enamel.)

 

I've stocked up on a lot of organic coconut milk, nuts, and local grass-fed meats, eggs, and produce (mostly veg since fruits are high in sugar.)

 

This is going to be quite a journey!!! We cleaned out the pantry and have to do the freezer tomorrow (I posted it all on Freecycle and a single mom is coming to get it all...) and have been frequenting all kinds of food blogs and websites. Dan is taking a leave of absence for 4-6 weeks while we do this and all of the needed tests, etc for other immuno issues that we can now do since we are 4+ months out from IVIG. We're going to try to do a lot of cooking and freezing. (If I wasn't clear, we are ALL doing the diet along with Pixie.)

 

AND last, but not least, we would love your input about any foods your kids like or recipes that meet our criteria. Dan helped me set up a blog to document our journey and add recipes that work for us. If you are interested, it is here:

http://chickiepea.wordpress.com/

 

 

Things have been busy lately, but Pixie is mostly stable. We are still seeing a shorter fuse than we would like, occasional turning of the pages, some repetitive OCD-like things (mild), some handwriting fluctuations, fevers sporadically, pupil dilation, and lots of sensory issues. However, for the most part (and to the outside world) she can function now. She has even, over the past 3 weeks, been able to go for an hour and play a computer game alone or do 10 minutes in her room alone- which is a DRASTIC change!! We have been doing the Nutrition Response Therapy for about that long and I attribute it to that.

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We are starting a new diet for Pixie, starting tomorrow (gulp! :) )

 

Recommended by her Nutrition Response Therapist.

 

NO grains or wheat. We can do rice and corn if we MUST, but she is responding to yeast/mold/fungus, so eliminating these is supposed to also help with those issues.

 

We can do nuts except almonds (b/c of salicylates) and peanuts and cashews both harbor mold.

 

No white sugar, honey, etc. She recommended Agave, but I read that that is really awful for the liver and processed like crazy, which makes it essentially HFCS, so we will stick with xylitol in TINY amounts if needed. I'm also not completely adverse to honey since it's natural, but I know that we are trying not to feed the yeast, so I get that aspect.

 

She wanted us to cut out ALL dairy except for butter, but then she heard that we only buy local, organic, grass-fed, raw cheese and said we can do that in moderation. I'm planning to use some organic whey that I separate myself as well (she said yogurt is out) because we do try to eat traditionally as well b/c of Pixie's being part Native American and tooth issues that we have (lack of enamel.)

 

I've stocked up on a lot of organic coconut milk, nuts, and local grass-fed meats, eggs, and produce (mostly veg since fruits are high in sugar.)

 

This is going to be quite a journey!!! We cleaned out the pantry and have to do the freezer tomorrow (I posted it all on Freecycle and a single mom is coming to get it all...) and have been frequenting all kinds of food blogs and websites. Dan is taking a leave of absence for 4-6 weeks while we do this and all of the needed tests, etc for other immuno issues that we can now do since we are 4+ months out from IVIG. We're going to try to do a lot of cooking and freezing. (If I wasn't clear, we are ALL doing the diet along with Pixie.)

 

AND last, but not least, we would love your input about any foods your kids like or recipes that meet our criteria. Dan helped me set up a blog to document our journey and add recipes that work for us. If you are interested, it is here:

http://chickiepea.wordpress.com/

 

 

Things have been busy lately, but Pixie is mostly stable. We are still seeing a shorter fuse than we would like, occasional turning of the pages, some repetitive OCD-like things (mild), some handwriting fluctuations, fevers sporadically, pupil dilation, and lots of sensory issues. However, for the most part (and to the outside world) she can function now. She has even, over the past 3 weeks, been able to go for an hour and play a computer game alone or do 10 minutes in her room alone- which is a DRASTIC change!! We have been doing the Nutrition Response Therapy for about that long and I attribute it to that.

 

Hi

 

My ds responded to yeast/mold/fungus also. We pretty much have him off of everything but rice and corn. Are these bad things to have which those types of allergies? He drinks rice milk, has brown rice cereal, and eats corn chips. If I can't give him those corn chips I don't know what he would snack on. It's pretty hard to tell him have some broccoli for a snack. I am curious what you were told about the rice and corn.

 

Mar

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We were told no corn, rice, or potatoes to the best extent we can. We are using them in moderation for sure! I know corn can harbor mold and the starches in rice and potatoes feed the yeast b/c they are essentially sugars.

 

Here is the SCD list of foods, if you are interested (though this is not exactly what we are doing, but VERY similar!)

 

http://pecanbread.com/p/legal_illegal_a-c.htm

 

Can he have nuts/seeds? We are soaking and roasting nuts/seeds(per the cookbook Nourishing Traditions) and seasoning them with various spices, or just salt and using those for snacks.

 

You can also crisp up grated cheese into "crackers" if you are on dairy, or kale, in the oven, for a crunchy snack.

 

We try to avoid puffed rice (it's been proven very toxic for animals) but we do use rice cakes occasionally- you can toast them in the oven and use spreads on them like butter, ghee, or nut-butter. Check out my blog if you haven't already! I checked out a HUGE stack of cookbooks from the library and we are modifying recipes and eating really well!

 

We are on Day 3 and already I feel better!! Pixie's face is not hot and red and I don't have the butterfly rash and "flushed" feeling I get, so something is definitely happening!!

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Pixiesmommy....butterfly rash? Are you having problems? Checked for Lupus?

 

I had a positive ANA titer...but, not positive enough to be positive! lol

I was always wondering if these ANA antibodies could have been passed to my children.

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