MAJOR behavior changes through diet!!! - Mothering Forums

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#1 of 121 Old 07-20-2004, 01:25 AM - Thread Starter
 
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I just had to share for anyone who may be in the boat we were in.

my bean was exhibiting bizarre behaviors taht only seemed to fit in with autistic children, yet she was not autistic.

she was said to look adhd by 3 education specialists, yet she does not have adhd.

she was said to have SID, yet she does not seem to fit the bill for that either.

I don't recall how we stumbeled onto this, exactly, but through much effort we came to learn she has a SLEW of allergies and food sensitivities.
I had her tested through Immuno Labs and found out that not only is she reactive to
-Gluten
-Dairy
and
-Soy

she is also reactive to
-Corn
-Egg

Since removing these things from her diet, she has changed dramatically.
I am confident that she will be happy and ready for school.

She no longer poop smears.
She is no longer tense all the time.
She no longer averts eye contact.
She no longer ignores people talking to her and she will even answer your questions now when she is in the middle of her own games.
She lets her family members hug and kiss her now and enjoys sharing hugs with her grandparents and friends.
She is happier.
She sleeps better.
She is better behaved.
She does not suffer from diaherra any longer.
She now enjoys playing with other children (used to just want to be alone)

This test cost us $400 and implementing the new diet has been a big struggle, but let you me tell you, it has been worth far more then the cost!
I am so happy and i Just want to share this with you mamas because I believe that the AP mamas here at MDC struggle so hard to know their children inside and out and to hear them when they are struggeling. I felt such depression at not being able to fix whatever was ailing my little bean for two years of struggles. And now I can do something to help her and to help everyone who shares her friendship and love.

For anyone who wants to chat about this more, let's keep this thread going! I know that there are many children who are acting out in ways that society would like to slap labels on and when it can be so simple as tracking down food sensitivities and getting them on a diet...well it is worth trying!

Also, the vaccinations she received are very likely a cause in her egg allergy (as we have been told by her doctors at this time).

Sending love to the mamas of
auctistic
aspergers
add
adhd
sid
spirited
sensory seeking
celiacs
and all other special needs

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#2 of 121 Old 07-20-2004, 02:16 AM
 
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wow!
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#3 of 121 Old 07-20-2004, 02:45 AM
 
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Lala, thank you for posting this thread. I am in the middle of moving in with my MIL and her grandson who is labeled ADD. He is wonderful and very trying at the same time. DH and I have been helping them the past couple of days and really noticed just how badly he eats. I have always wondered how much of his "issues" are diet related, but do not want to push this on MIL for fear of making her feel that she is not doing a good job raising her grandson. I read the Mothering article on the Feingold Diet and have been interested in this issue since because I know personally how much additives in food affect my abilities, but never thought of allergies in foods causing the same things. I always thought of allergy problems being more internal, less emotional/mental. Thank you for opening my eyes to this and I am glad that you were able to find out what was happening to your bean. I can only imagine the relief you must be feeling.

Mother to one wild and crazy boy 12/29/2002.
Midwife, Homeschool Educator and Crafter.
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#4 of 121 Old 07-20-2004, 09:24 AM
 
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Wow Lala that is fantastic! It is such a powerful feeling when you gain that knowledge and insight into what is causing your child harm and you learn how you can help them. When you begin to see with your own eyes how your baby improves day by day it is an amazing feeling. Hugs to you for perservering and helping your little girl

There was a fantastic book I borrowed from the library last year. I can't recall the name at the moment, but I am headed there later on today so maybe I can find it. It was the story, told by the mother, of a family whose 3 year old was diagnosed with Autism. The mom and dad both had science backgrounds, and they did a lot of study on food and it's impact on the body. I do remember that one of the main support people in the author's life was a lady by the name of Lisa Lewis. Apparently she had a great website at the time. I haven't done any searches to find it yet. Anyway, the book describes the author's son's amazing progress, and the progress of other children. It is quite specific as to giving food guidelines as well.

Does anyone know this book?

My own son, 26 months, had severe reactions to egg whites. He has just started eating them again with no obvious reactions YAH! He is lactose intolerant, and cannot tolerate gluten products. He recently had the blood test (I can't remember what it was called) to test for gluten allergy, but it came up negative. I have heard that this really isn't a good predictor anyway. In the next few weeks I plan on testing certain gluten foods to see if it is just wheat or if it is gluten in general.

My son has always had toddler diarreha. I just couldn't accept this as a baby "phenomenon". He would wake up at 3 am screaming for toast! He absolutely loves it. But when he has gluten his energy level skyrockets and he likes to throw things etc.

Thank you for sharing your story Lala, and I hope that you don't mind that I shared mine. I have learned more being a mommy in the last two years than I ever did in six years of university LOL!
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#5 of 121 Old 07-20-2004, 09:56 AM - Thread Starter
 
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oh please do share your stories mamas!

As for the tests for gluten...none are 100% accurate.

The blood test on a baby/toddler is not a great choice for accuracy.
There is a biopsy surgery that general doctors like to do to check for celiacs specifically, but that won't allert you to gluten sensitivities that may not be destroying villi.

Enterolabs does a stool test that is well respected among the celiac community and Immuno Labs does a food allergy testing. Bean tested for 3 of the 5 gluten containing grains, so we took her off gluten all together and we saw huge changes right away.

When she snuck one cracker, she got diaherra. Then no diaherra until she snuck about 7 cheerios and then diaherra again.

My bean also had what her doctor referred to as "toddler diaherra" as well as a non stop allergy ring and tons of rashes since birth.

Well, when her diaherra got so bad we were cleaning up messes every half an hour, that is when I decided to get drastic adn start changing her diet.
I took out dairy first and juice. She only gets about 8oz of juice a day, mixed with additional water (too much sugar previously).

That helped, but still trouble, so we took out soy. That helped, but the diaherra started up again pretty badly and that is how we first realized wheat/gluten was her main culprit. IT took us the longest to figure that out.
Then we did the ImmunoLab test and found out about the egg and corn.

What a relief to have that information!!!

I have read that some children cannot process the proteins in gluten and dairy (hence what is referred to as the autism diet of no gluten or dairy in a simplified way of saying...) and it transfer somehow into their systems and reacts similarly to a drug or mind altering chemical that reflects behavior changes. This was another big factor in us going gluten free because her poop smearing behavior seemed to be very directly linked to her eating gluten. When she was off gluten, she stopped and when she was on she started again and we took her off and she stopped almost immeadiately! I could find NO help for that problem in the 2 years that she exhibited the behavior!

Most importantly to me, bean is so much happier and healthier and we will be nipping what could have been long term health problems in the bud by getting these foods that are toxic to her body OUT of her system at such a young age.


I also read that Mothering Feingold diet article and I think it is a great idea for any child to get those dyes and artifical junk out of the system!
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#6 of 121 Old 07-20-2004, 10:06 AM - Thread Starter
 
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You know, for anyone really interested in searching out your child's allergies, there is a way to do it at home without paying $$$

There is the elimination diet, but you have to eliminate SO many foods up front and then reintroduce them. That is the hard part. May people cannot fathom what to eat for a full day if you eliminate all the foods bean is allergic to.

Basically you need to eat a produce based diet of
fruits
veggies
non processed meats
beans
rice
quinoa
millet


that is a huge change for much of america, but it can be done! Trust me I'm living proof!


I will look for the website...
of course your child could get quite sick if they are very sensitive to a food and you take them off it and put them back on it, but if they are eating it now anyway, it may be your only chance to figure out the connection!

Also, some moms have success with kineseology/muscle testing for food allergies. We tried that and I think that it may be a good guide, but that it isn't the "answer".

For example, they told us bean was allergic to wheat, dairy, egg, corn, adn other gluten grains so the kineseologist was on the right track, and we took those things out of her diet, and when tested a month later they no longer showed up (maybe becuase they weren't in her system?) so they said to put her back on those foods...well that is when she got sick again.

So, not a fool proof appraoch, but possibly a good starting guide.

If I would have known then what I know now, I would not have reintroduced the gluten grains or dairy.
And as it stands I will not reintroduce any of her allergen foods anytime within the next year or more and definetly not until she has been entirely free of symptoms for a long long time! She still struggles with major sensitivities and reacts to even trace amounts of gluten, so cross contaimination is something we battle...

sorry to go on and on!
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#7 of 121 Old 07-20-2004, 10:13 AM
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Quote:
Originally Posted by LaLa
The blood test on a baby/toddler is not a great choice for accuracy.
But Immuno Labs uses blood to test for these food allergies in babies/toddlers, yes? So are you saying this isn't accurate? Thanks.

Such a wonderful story you've shared - thank you!!

Quote:
Testing information
A. Prepare the testing specimen as follows:
1-3 tests require one full SST tube
4-6 tests require two full SST tubes
7 or more tests: 3 full SST tubes
That's a lot of blood from my toddler, I don't think he could handle it. What did you do? He would probably need more than 1-3 tests.
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#8 of 121 Old 07-20-2004, 10:30 AM
 
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We have been diarreha free for a week. DS grabbed a cracker off the table at our weekly playgroup yesterday. He had one nibble. Maybe an eight of an inch was gone from the cracker - horrible diarreha first thing this morning. Of course cross contamination of the rice cakes he was eating probably contributed some.

I had read in a celiac article that millet is usually not tolerated by most celiacs as it is often grown in the same fields as wheat or something to that effect. Ds loves millet and we eat it a lot, but I haven't given it to him in the last few weeks. I will have to try it again and see what happens.
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#9 of 121 Old 07-20-2004, 10:33 AM
 
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Wow, thanks for this information!! I have really been wanting to look into this more, my dd has a lot of those characteristics, especially averting eye contact, not really wanting to be hugged or kissed, and not playing well with other children. We are most definitely cutting all dairy, eggs, and processed foods, and I'd really like to try a gluten-free diet, too. It all seems so overwhelming, though.. especially when everyone else in our family can eat a seemingly "normal" diet and is fine. Not that we all wouldn't benefit greatly as well, but still. It's such a paradigm shift for my dh.. it has taken him a lot longer to get out of the "I grew up on that stuff and I am fine" mindset.
Anyway! Thanks again for the info. I am so glad to hear that it's working so well for your babe!
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#10 of 121 Old 07-20-2004, 11:28 AM - Thread Starter
 
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playdoh, it is a different type of blood test then what your doctor will run when they are checking for celiacs.

The immunolabs does a culture with the blood for each of the foods they are testing and then they read antibody levels in how they react to each food (or don't react)

then they send us a report with her reactive foods and level of severity for each food as well as a list of foods she did not react to and a sample rotation diet for 4 days to try. Of course, that is not fool proof as it says she can eat oatmeal, but like millet, oatmeal is processed with barley and she gets diaherra when she eats it.
But it is a great starting point!


Mrpeabody'smom I have read that too about millet and we havent' tried it in a while! It took me a while to see that oatmeal was a culprit, so I suspect millet could do the same! I'm sorry about your little one getting sick!

wholegrainmama, you can sneak the gluten free diet in on your hubby with replacement foods. There are mock foods for almost everything from bread to cheese!
You still want to avoid hydrogenated oils, but look at sites like Missrobens.com
Ener-G.com
glutenevolution.com
and others.

You'll see there are a TON of answers for the eating problems. You will likely find resources at local grocery and health food stores...you'll just have to really search them out!

My dh doesn't like the idea of being gluten free etc, but he doesn't mind at all when I serve a meat, potatoe, veggies and some fruit dessert.
He doesn't even realize we are "missing" anything.

YKWIM?

And they make fantastic pasta noodles out of rice
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#11 of 121 Old 07-20-2004, 11:36 AM
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Sorry, I should have included that my quote was from the Immuno Lab website. Those are their instructions for testing for food allergies, not celiac disease only.

I just completed a blood test (finger prick) for 150 different foods as my IgE levels were very high as well as my other symptoms after dairy and wheat indicated food allergies.

But my son has never had a blood draw (NO heelstick or anything) and I'm concerned about that. He is very, very sensitive.

What was the blood draw for your daughter and how was that performed?

TIA.
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#12 of 121 Old 07-20-2004, 12:21 PM
 
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Quote:
Originally Posted by Mrpeabody'smom
There was a fantastic book I borrowed from the library last year. I can't recall the name at the moment, but I am headed there later on today so maybe I can find it. It was the story, told by the mother, of a family whose 3 year old was diagnosed with Autism. The mom and dad both had science backgrounds, and they did a lot of study on food and it's impact on the body. I do remember that one of the main support people in the author's life was a lady by the name of Lisa Lewis. Apparently she had a great website at the time. I haven't done any searches to find it yet. Anyway, the book describes the author's son's amazing progress, and the progress of other children. It is quite specific as to giving food guidelines as well.

Does anyone know this book?
The book is Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery by Karyn Seroussi. She and Lisa Lewis publish the ANDI newsletter and they have a website, too. Lisa Lewis has two books -- Special Diets for Special Kids (I and II). All three books are good for getting the basics of the science and some starter recipes, but I never use them anymore because only a handful of recipes turned out really well for me.

A good resource for food allergies and elimination diets is Is This Your Child? by Doris Rapp. And Living Without (magazine and website) is a good all-around food sensitivity source, though it started out as a celiac publication.

A search of threads here at Special Needs will pull up even more information for you. It's pretty rare to encounter a mama whose child has autism, ADHD, sensory issues, etc who hasn't tried dietary intervention.

The only warning I offer people is to not be disappointed if it's not a miracle solution. For most of us, dietary interventions are necessary to improve our child's quality of life, but they don't produce the miracle turnaround illustrated in Seroussi's book. My own son has to be gluten-free, casein-free, soy-free, yeast/mold-free, and dye-free or he suffers physically, mentally, emotionally, behaviourally, cognitively, etc, etc. But following the dietary restrictions doesn't make him less autistic. And even when he went on a food strike for several days, he was still autistic. Diet is powerful, but not a cure-all for most.

Good luck,

Tara
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#13 of 121 Old 07-20-2004, 01:24 PM
 
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Yes, that the one I just returned from the library and (gotta love the small libraries) I was able to find it again.

A wonderful cookbook that I am using 95% of the time, and DH loves the menus I make from it, is called Wheat-free Recipes and Menus by Carol Fenster, Ph.d.

What I am trying to find ideas for though is how to replace yogurt and cheese. I don't think rice cheese is suitable for cooking is it? And DS loves yogurt. I wish there was something I could substitute for that. He only ate plain, organic once in a while with some added fruit.
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#14 of 121 Old 07-20-2004, 01:38 PM
 
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you can cook with rice cheese, but it is $$$ and it has casein in it, if that is an issue. If not, it is good on pizza, grilled cheese, quesadillas, etc.

an alternative that has worked great for my family is nutritional yeast. It is great on EVERYTHING you would put cheese on. I make a quick cheesy sauce for macaroni by adding nutritional yeast, olive oil, and rice milk to the pot o' pasta. I don't measure, but basically follow the boxed mac & cheese ratios.

I also have a recipe for cheesy-sauce made from nut. yeast, if anyone wants it. It is good for lasagna/baked ziti, pizza, and even for veggie dip


eta: I totally forgot to say YAY LALA!!

I've always had food allergies/sensitivities and hoped I could avoid passing them on to my kiddos. Ds1 seems to have real problems with foods with coloring and that sort of stuff, but that is really all. Ds2, however, seems to have all my problems but even more pronounced than mine are/were
It must be such a relief to have a system down with safe foods. I always feel so bad when ds has a reaction to food--since most times I know I could have prevented it, and I know how cruddy it feels to get sick from food

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#15 of 121 Old 07-20-2004, 01:45 PM
 
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Is nutritional yeast the same thing as Brewer's Yeast?
I would love to have the recipe for the cheese sauce.
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#16 of 121 Old 07-20-2004, 01:49 PM
 
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nope--definitely not the same.

Here is a link from bulkfood about nut. yeast.
http://www.bulkfoods.com/yeast.htm

I'll go grab my recipe and type it up and some other info

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#17 of 121 Old 07-20-2004, 01:51 PM
 
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T

Unreal, please post them on Good Eating!

And can you estimate with the quantities for the "cheese" sauce? Like, umm, 1 handfull of yeast....or whatever.
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#18 of 121 Old 07-20-2004, 02:06 PM
 
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Have you read the book IS THIS YOUR CHILD? by Doris Rapp?
In it, she talks about all the various reasons that kids act up and have sleep problems and behavior problems due to food sensitivities.
I have it and love it. My dd has DSI (some call it SID).
You can get this book used on Amazon.com.

Glad to hear that diet is helping.
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#19 of 121 Old 07-20-2004, 02:31 PM
 
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link to cheesy sauce recipe

http://www.mothering.com/discussions...44#post1772844

and, for the quick sauce, for about a pound o' macaroni I guess I use about 1/2 cup of nut. yeast flakes (a big handful) and then about 2 Tbsp olive oil and enough milk to help it coat everything...hmm maybe I'll try measuring next time

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#20 of 121 Old 07-20-2004, 02:33 PM
 
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Glad I asked :LOL

I can just picture DH's face biting into a brewer's yeast lasagna!

I'll have to hunt that down. I have read about it before, but thought it was brewer's yeast and didn't try the recipe.
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#21 of 121 Old 07-20-2004, 02:40 PM - Thread Starter
 
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I did read the Special Diets for Special kids, but it really didn't fit with her corn, egg, and soy free diet on top of gluten and dairy.

What is a good fit is
The Garden of Eating cookbook, which is a produce based cookbook. I posted a link to the site in the Nutrition/GoodEating forum. IT's a fantastic resource as it teaches me how to do Mayonaise, dressing, etc.

Raw food-ists will list recipes for nut cheeses. I have a ton of recipes, i just have to find time to list them!

Tara, that is a very good point! We are lucky in that many of our problems were solved with diet changes, but I hope I am not implying that changing your child's diet will eliminate their special needs!



Unreal, that is the guilt I have been fighting for the past 4 years...when she gets sick it just hangs on me that I could have done something to prevent it and that I was somehow failing her. Now I finally feel like I can do something!!!


back to cheeses, soy makes a good cheese replacement (tofu) if you can stomach soy. We can't do that here.

I will have to check out that book, "Is this your child"

It sounds like a great one to read!

Can I just say THANK YOU! I have felt so alone for so long (well except my good friend Chanley who is living a parallel life with me in the deep south)
I have cried so many times feeling like a failure to my daughter and I've cried so many times in frustration as I cleaned up poop messes or when I took her out of programs and schools and when people suggested there might be something "wrong" with her and when no one could help us with any of it.
It has been such a long road and I am so thankful to read your kind responses and hear your stories too!

I can't express how much I appreciate you mamas being "here"
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#22 of 121 Old 07-20-2004, 02:49 PM - Thread Starter
 
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oh I forgot to answer your question, playdoh, about the blood test. They took one vile from her arm and it really was an awful experience. Her dad left work to come buy her a toy because he felt so terrible about her going through it!

We took her to a pediatric blood lab so they were very prepared for children and very kind to her, but children have such small veins that they cannot always get the needle in on the first try. For bean it took 4 tries. 4 awful, painful, and confusing tries.

It makes my eyes well up to think about it.
I will not be doing it again anytime soon. At this point we will work from diet and elimination diet where needed. I keep a food journal and she is also taking food enzymes (pineapple/papya based) and pro-biotics to help heal her intestines.

These are the things we're doing to help as well as sticking with her strict diet of no corn, soy, egg, dairy, gluten. (there are actually a few other things, but those are the main ones)

So, if you are hesitant to do a blood draw, I totally understand.
It is not easy, although she was smiling within 2 minutes after. I had brought her a cookie (wheat free) and some rice milk. (I know you are not supposed to reward with food...but this was an emergency!)
and she got a sticker. But she did cry about it for a week whenever anyone asked her about it!
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#23 of 121 Old 07-20-2004, 03:55 PM
 
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Quote:
Originally Posted by LaLa
Tara, that is a very good point! We are lucky in that many of our problems were solved with diet changes, but I hope I am not implying that changing your child's diet will eliminate their special needs!
I don't think you're implying that at all. I just wanted to point out the concern because I have seen parents give up on a dietary change that didn't produce a miracle -- overlooking the small ways in which it did help. I'm happy about every little improvement, and I hate to see parents get discouraged because they are unable to see the little realities through the big illusion.

Glad things are going well for you. I am currently working on a BS in Nutrition (trying to figure out how to feed my boy!), and I am absolutely floored by how little attention the subject is given in educating doctors.

Tara
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#24 of 121 Old 07-20-2004, 04:12 PM - Thread Starter
 
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Wow! That is great! I'm surprised how little the doctors we have met with seem to know about all of this (not just food, but certainly including food...).

Thank you!
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#25 of 121 Old 07-21-2004, 12:21 AM - Thread Starter
 
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okay, I found the sites with the help of an internet friend

here is one that is Dr Rapp's site
http://www.drrapp.com/

and the other is an article by Dr Elson Haas on the detox diet.
http://chetday.com/haasdetox.htm
I haven't tried these (we did the lazy approach with the immuno tests)

but I am very interested in trying them on myself!

anyone have experience?
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#26 of 121 Old 07-21-2004, 01:57 PM
 
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Thanks so much for the links! I haven't had a chance to explore them yet, but since I've read books by both authors, I know they will be worthwhile! (I recommend Is This Your Child? by Doris Rapp to all parents facing difficulty, and I just finished Staying Heathy with Nutrition by Elson Haas for one of my nutrition courses).

Tara
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#27 of 121 Old 07-21-2004, 02:19 PM
 
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thank you thank you thank you

i suspect gluten allergies with my dd too (and i know me stopping dairy changed her sooo much!)

but really now i'm goin to get her tested

i was wondering would naturopathic dr be better when talkin abt food sensitivities or just the regular family doc?

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#28 of 121 Old 07-21-2004, 02:34 PM - Thread Starter
 
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I dont' know about which doc route to advise. It very much depends on the person. Our pediatrician is a wonderful man and talented doctor and so great with kids, but he doesn't know about all this allergy related stuff so he could not help us.

I'd just start talkign to people and see who recommends what!
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#29 of 121 Old 07-21-2004, 02:43 PM
 
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Quote:
Originally Posted by neveryoumindthere
but really now i'm goin to get her tested

i was wondering would naturopathic dr be better when talkin abt food sensitivities or just the regular family doc?
Just a thought: for us, it was a matter of money. Our pediatrician didn't know much about allergies, but his referral to an allergist was covered by our insurance. Much as I love our homeopath, we would have had to pay, and we just didn't have it built into the budget.

That being said, I found that I could work with the information we got from the allergist, and there were a couple of allergies that I wouldn't have even thought about. Seeing an allergist doesn't mean you are stuck with the allergist forever.

If money is not an issue, then it may be worth noting that doctors in America get very little instruction in nutrition (a matter of a few hours). A naturopathic doctor may be better informed overall, but all doctors vary -- our current pediatrician knows lots about autism because it is his area of interest. A family doctor who is interested in nutrition and food sensitivities may serve you better than a naturopath who isn't interested in the subject.

Good luck!

Tara
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#30 of 121 Old 07-26-2004, 02:23 PM
 
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Well, thanks to this thread I dove into taking a strong grip on our family's diet, especially that of my two girls, both of whom are labeled high functioning PDD-NOS, but my awesome new ped and I both really see them as more Asperger-ish. They both have the SID that often goes along with that as well. My oldest DD, is painfully shy due to her speech/language delays (but yearns for friends) and my younger DD also has behavior issues, very much like ADHD - impulsive (she BOLTS and runs a good distance - man is she fast!) and major mood swings (when she's happy she is truly my sunshine, but when upset I would swear the whole town can hear her scream).

Anyway, I have been wondering for awhile why they both seem to yo-yo so much in their progress and over mood. So, starting Friday morning I took dairy out of their diets and already we are seeing great improvements - the biggest being both of their moods. They have both happy and content for the majority of their days. When DD2 was upset this weekend, she yelled pretty loudly ONCE, kinda let out a "Hmmf!", then moved on to something else. Today at our playdate, she ran off, but when I confronted her with her two choices "Are you going to play with M? Or do you need to go home?" she STOPPED, yelled "Play with M!" and ran right back to the swingset. : OH! both of my picky eating girls also decided this weekend that they NEEDED fruit and veggies!? They used to BALK just looking at them, forget ASKING for them. DD#1 wanted blueberries sprinkled with sugar, apple slices with peanut butter, and raw baby carrots and 'dip' (ranch dressing, which I know had dairy in it, but I wanted to encourage eating veggies at that point since that was a HUGE step for her). DD#2 wanted to eat blueberries sprinkled with sugar upon seeing her sister eat them. She tried them and loved them! Those are all things I've offered in the past but hadn't had success with before. It was sooo strange, yet I don't think it was a coincidence that their system probably felt better so they felt like eating more variety.

Anyway, I just had to share and say THANK YOU for this thread!!!

Wife of 1. Mom of 3. Conquering disability challenges, one achievement at a time.
 

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