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Old 07-19-2012, 01:04 PM - Thread Starter
 
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I'm posting this in the allergy forum as well, but it just seeems like other parents of kids with SN seem to experience this more than the rest of the population which is why I'm asking here too...

 

My son is four years old and has a handful of true food allergies, as well as a definite intolerance to milk. Shortly before his second birthday we went GFCF and he stopped eating the foods he was allergic too. I noticed a huge improvement in his mood and behavior with cutting dairy, though didn't notice too much change with the other foods although one particular intolerance that we found out about a few months into it improved his digestion a lot. I was no longer seeing tons of undigested food in his stools and his development overall took a huge leap. (Suspecting an ASD was part of why we started GFCF). We've stuck with this diet for all this time because it was seeming to help.

 

Fast forward and the past several months, his behavior has been getting more and more out of control. His mood is terrible. He cries and tantrums off and on all. day. long. He's driving me nuts. Its pretty much exactly how it was before we figured out dairy was such a problem, except that his development is more on track than it was (though still delayed and gets OT, PT, and speech). We started Feingold a few weeks ago with no improvement (though I know they don't really cut all sals completely.) His poop is all undigested food again too.

 

I received such great advice here last time around, and I am hoping this will sound familiar to someone and hopefully we can get some ideas for how to help him. I really have a strong feeling his mood and behavior are related to his diet. I am wondering how to proceed. IgE testing? Failsafe diet? Vitamins/minerals? Other ideas...? I am going crazy walking around on eggshells and listening to him scream all day long and I know this is no fun for him either. TIA!

 

ETA:  He also has hypotonia and suspected Apraxia.  I've read some things showing a correlation between these and malabsorption etc, which is why I'm mentioning it.

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Old 07-27-2012, 04:04 PM
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I'm so sorry to hear your little guys is having such a hard time. Just thought I'd give your post a little bump for attention. :)


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Old 07-27-2012, 04:32 PM
 
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I'll give it a go and I hope it helps...I think you'll have to figure this out through trial and error.  One thing that I've seen over the years is when you take away your child's triggers new lesser offending triggers can look much worse or foods that you have become overly reliant on as a substitute can then become irritants when they weren't before.  It is really revealing the underlying issue, which you wisely noted, is digestive health. 

 

I'm not sure how you should proceed because I don't know what you've done to support his digestion already.  You also didn't mention if he had any medicine, antibiotics or vaccines recently...all of which could have impacted the health of his gut.  Probiotics and fermented foods help to heal the lining of the gut.  We drink a lot of kombucha and fermented vegetables.  Homeopathic "bowel nosodes" are also available with prescription by a trained homeopath, that help the body restore a healthy gut flora.  My daughter and I are taking one now called Morgan pure and it really works.  But, you'd need advice from a homeopath on which one to give.

 

As for food, if it were me, I'd go back to square one and go on an elimination diet, where you feed him only the least potentially irritating foods, such as boiled unspiced chicken, cooked pears, carrots, beef and potatoes, green beans etc.  No fun, but it is better then being sick!  Then track with a notebook when you reintroduce a food into the mix.

 

If you can create a healthy enough diet with a limited number of foods that he is comfortable eating and can digest well then you have some time to try and heal his gut. 

 

I hope that over time it gets better.

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Old 07-27-2012, 04:47 PM
 
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My mom, brother, and I have gone to an allergist that did both food and air born allergy tests.  It has been helpful for me to know foods to avoid; they did both the cat claw tests and sublingual.  They narrowed down to allergies and intolerances.  I would recommend searching out a good allergist to work with in addition to keeping a diary of foods ate and problems.  Not all allergists are good to work with because found the local ones were not very helpful and just wanted to do shots and no food testing.  We had to travel to WI.  We have not done this with dc, but might in the future with dd because she seems to really have a problem with dairy and an aversion to eggs (I am allergic to the albumen and I always thought I just did not like them like my grandma until I was tested). 

 

My mom went there recently because she was having lots of pain in her jaw and joints and they said some fruits and pollens from trees cause a cross reaction.  Sometimes, I think it is not as clear cut as just narrowing out the offending food, and this is why I think a good allergist could help.  

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Old 07-27-2012, 06:37 PM
 
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Check your insurance.  Not all of them cover IgE tests anymore because they're not definitive.

 

Is he on any supplements?  Fish oil?  Probiotics?

 

Also, I noticed this same thing with my own son at 4yo and part of it wound up being sugar-insulin balance.  If you just watch the combining of his foods such that he doesn't have any sugar, starch or fruit unless he has it with fat and protein--you might see a difference.  You should try to make sure the fat and protein are a larger proportion than the sugar/starch/fruit for the first few days.  But the result (once you get the food combining right) should be seen pretty fast.

 

Omega-3s have gotten a great deal of praise from the apraxia community.  I wonder if there's a combination of things going on simultaneously.  Of course, I would try multiple things simultaneously to fix it lest you see a reaction and not be able to definitively tie it to one thing.


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Old 07-30-2012, 12:00 PM - Thread Starter
 
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I'll give it a go and I hope it helps...I think you'll have to figure this out through trial and error.  One thing that I've seen over the years is when you take away your child's triggers new lesser offending triggers can look much worse or foods that you have become overly reliant on as a substitute can then become irritants when they weren't before.  It is really revealing the underlying issue, which you wisely noted, is digestive health. 

 

I'm not sure how you should proceed because I don't know what you've done to support his digestion already.  You also didn't mention if he had any medicine, antibiotics or vaccines recently...all of which could have impacted the health of his gut.  Probiotics and fermented foods help to heal the lining of the gut.  We drink a lot of kombucha and fermented vegetables.  Homeopathic "bowel nosodes" are also available with prescription by a trained homeopath, that help the body restore a healthy gut flora.  My daughter and I are taking one now called Morgan pure and it really works.  But, you'd need advice from a homeopath on which one to give.

 

As for food, if it were me, I'd go back to square one and go on an elimination diet, where you feed him only the least potentially irritating foods, such as boiled unspiced chicken, cooked pears, carrots, beef and potatoes, green beans etc.  No fun, but it is better then being sick!  Then track with a notebook when you reintroduce a food into the mix.

 

If you can create a healthy enough diet with a limited number of foods that he is comfortable eating and can digest well then you have some time to try and heal his gut. 

 

I hope that over time it gets better.

Thank you!  In terms of vaccines, he had the prevnar series and nothing else ever.  He was on maybe 3-4 courses of antibiotics between 6 months and maybe 15 months, but other than that no other antibiotics, and he was on Zantac for reflux from maybe 2 months until around 11 months I want to say. 

 

 I think you're right and that he has become intolerant of new foods.  I started him last week on the failsafe diet which basically is an elimination diet.  The really hard part is that I'm not sure we have everything problematic out.  He's basically having only chicken, fish, beef, rice, potatoes, pealed pears, and canola oil.  I'm suspecting corn, citrus, and coconut may have been problems in his diet, but honestly I am wondering about the potatoes too now.  Ugh!  Its so frustrating!  I'm also wondering if he should be on digestive enzymes.  Any input? 

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Originally Posted by melissa17s View Post

My mom, brother, and I have gone to an allergist that did both food and air born allergy tests.  It has been helpful for me to know foods to avoid; they did both the cat claw tests and sublingual.  They narrowed down to allergies and intolerances.  I would recommend searching out a good allergist to work with in addition to keeping a diary of foods ate and problems.  Not all allergists are good to work with because found the local ones were not very helpful and just wanted to do shots and no food testing.  We had to travel to WI.  We have not done this with dc, but might in the future with dd because she seems to really have a problem with dairy and an aversion to eggs (I am allergic to the albumen and I always thought I just did not like them like my grandma until I was tested). 

 

My mom went there recently because she was having lots of pain in her jaw and joints and they said some fruits and pollens from trees cause a cross reaction.  Sometimes, I think it is not as clear cut as just narrowing out the offending food, and this is why I think a good allergist could help.  

Thank you Melissa.  Where is WI did you travel to and what was the name of the allergist you saw?  We have friends there and have visited in the past. 

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Originally Posted by heatherdeg View Post

Check your insurance.  Not all of them cover IgE tests anymore because they're not definitive.

 

Is he on any supplements?  Fish oil?  Probiotics?

 

Also, I noticed this same thing with my own son at 4yo and part of it wound up being sugar-insulin balance.  If you just watch the combining of his foods such that he doesn't have any sugar, starch or fruit unless he has it with fat and protein--you might see a difference.  You should try to make sure the fat and protein are a larger proportion than the sugar/starch/fruit for the first few days.  But the result (once you get the food combining right) should be seen pretty fast.

 

Omega-3s have gotten a great deal of praise from the apraxia community.  I wonder if there's a combination of things going on simultaneously.  Of course, I would try multiple things simultaneously to fix it lest you see a reaction and not be able to definitively tie it to one thing.

Hi Heather! Thank  you for your suggestions.   He was on fish oil until recently when we started Feingold and now failsafe.  Honestly we had been really sporadic lately about the fish oil anyhow.  Initially it made a HUGE impact on his speech, but I realized it is derived from soy which he is truly allergic to and so I took him off just to see what would happen.  No changes really that I'm noticing.  He isn't on any probiotics.... I need to start that.  Do you have one you'd suggest?  What about digestive enzymes?  Have you used them with your DS at all?  I can't get over how pale his poop is and how there is so much undigested food in there.  I'd take him back to a GI doctor but when we went a couple years ago we were told it was normal for toddlers.  Yeah.  Right.  My 8 month old was having blood in his stools as well until I cut out several foods that he tested negative to on the skin test.  I'll try pairing up the starch with fat and protein.  It is practically impossible to get protein in him sometimes. 

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Old 07-30-2012, 03:17 PM
 
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If I were you I would use anything that would improve underlying digestion.  I've used digestive enzymes and probiotics before for my son.  I think it is important to try and nurture and strengthen his gut in whatever way you can.  In my mind that would also include seeking out reasons for compromised digestion...such as an overgrowth of yeast etc.  Pau d'arco is one herb we used to use diligently as a natural way to kill fungus and yeast.  Herba-pharm sells it online if you can't find it near you, and they are very reputable and organic.  You are going to want to at the same time, find ways to nourish his growing brain to improve his development.  There are trace mineral supplements that you can buy.  You can buy a pure fish oil supplement such as one made by nordic naturals...pure cod liver oil (no soy to be found).  When you buy supplements from the drug store, often they are in a soy base capsule.  You can have better luck going to a whole foods which will often label their supplements free of allergens.  Or, buy online (nordic naturals or spectrum...good oils!) in bulk to make the shipping worthwhile.  I would also supplement with b vitamins especially b 12. 

 

If you use homeopathy, it is possible to clear the unwanted effects of vaccines or any allopathic drugs you've needed to use, through a system called isopathy.  If it is something that worries you, you can research what isopathy is on-line.  Spectrum kiddo's can be very very sensitive and certainly with his digestive issues he would have had a difficult time clearing toxins out of his body.  Homeopathic principles see a sense of order and cohesion to getting better from taking a helpful dietary step such as you did, and then your son getting worse, as they would see it as "uncovering a new layer for clearing".  It may be that toxins, an infection or even a yeast overgrowth can prevent further progress.  I have used homeopathy for my family for 10 years with three different practitioners and we learn something new all the time about remedies and the best ways to treat ourselves.  My son has made great progress.

 

Good health to you and your son!
 

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Old 07-30-2012, 10:56 PM
 
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Thank you!  In terms of vaccines, he had the prevnar series and nothing else ever.  He was on maybe 3-4 courses of antibiotics between 6 months and maybe 15 months, but other than that no other antibiotics, and he was on Zantac for reflux from maybe 2 months until around 11 months I want to say. 

 

Prevnar was seriously what did us in and had us stop vaxing.  We were not anti-vax, but Prevnar was an absolute nightmare.

 

 

 I think you're right and that he has become intolerant of new foods.  I started him last week on the failsafe diet which basically is an elimination diet.  The really hard part is that I'm not sure we have everything problematic out.  He's basically having only chicken, fish, beef, rice, potatoes, pealed pears, and canola oil.  I'm suspecting corn, citrus, and coconut may have been problems in his diet, but honestly I am wondering about the potatoes too now.  Ugh!  Its so frustrating!  I'm also wondering if he should be on digestive enzymes.  Any input? 

 

Intolerances get complicated.  If you look at potatoes, then you look at nightshades in general because it's the same family.  When you look at dairy, you also look at soy because of the coincidence rate.  When you look at dairy you also look at gluten because they're digested by the same enzyme.  So when you suspect something--look at what you KNOW already that he reacts to and see if you find a connection.  If you do, it may help you to figure out the remaining "problem" foods in his diet.  Does that make sense?

 

 

Hi Heather! Thank  you for your suggestions.   He was on fish oil until recently when we started Feingold and now failsafe.  Honestly we had been really sporadic lately about the fish oil anyhow.  Initially it made a HUGE impact on his speech, but I realized it is derived from soy which he is truly allergic to and so I took him off just to see what would happen.  No changes really that I'm noticing.  He isn't on any probiotics.... I need to start that.  Do you have one you'd suggest?  What about digestive enzymes?  Have you used them with your DS at all?  I can't get over how pale his poop is and how there is so much undigested food in there.  I'd take him back to a GI doctor but when we went a couple years ago we were told it was normal for toddlers.  Yeah.  Right.  My 8 month old was having blood in his stools as well until I cut out several foods that he tested negative to on the skin test.  I'll try pairing up the starch with fat and protein.  It is practically impossible to get protein in him sometimes. 

 

First, be sure to only try one new thing at a time.  If you've got the diet under control and stable for a good two weeks, then yeah--add a new thing.  I'm not sure what fish oil he was on but we use Nordic Naturals liquid and to my knowledge there's no soy.  Wait--are you vegan?  Maybe that's why you're using a soy-derived Omega?

 

Probiotics--I don't have a specific although I stick to refrigerated stuff.  You can get Garden of Life's "Primal Defense Kids" in most Whole Foods or Vitamin Shoppes and they've got a strain that's good for yeast.

 

Enzymes have the potential to make them hyper--so be forewarned.  But Houston Neutraceuticals makes a set (Peptizyde and Zyme Prime) targeted at kids in the spectrum--so we use those when we use them.  Side note: they will help mommies get out of bed in the morning instead of dragging out of bed in the morning.  :)

 

And I'm sure the doctors meant it when they said it was normal for toddlers... as in "this is what we normally see".  eyesroll.gif


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Old 07-31-2012, 01:08 PM - Thread Starter
 
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Thank you livinglife and heather! We are using Nordic naturals 3-6-9 but it says it has vitamin e derived from refined soybean oil. He has a true soy allergy and dairy intolerance but I always thought it wasn't an issue, but pulled it anyhow in case. I'm not sure if it's feingold or fail safe approved which is also why I'm pulling it at the moment. I'm seeing no difference however.

Good call on the nigghtshades Heather. He has a true tomato allergy...

Do you guys know anything about nutriiveda? I'm inclined to think its a scam, but curious if anyone has experience with it.
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Old 07-31-2012, 02:25 PM - Thread Starter
 
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Oh...forgot to ask but what did you experience with Prevnar Heather?
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Old 07-31-2012, 04:46 PM
 
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I've never heard of nutriiveda.  Naturally I was curious....so I looked them up online.  I read their description of the ingredients.  But, what I still don't understand after reading the description, is how their whey protein isolate can be casein free and free of MSG...."Isolate" proteins free MSG through the process of making the protein.  Do they filter out both the casein and the msg?  If so, do they have an independent lab certify that that is the case? 

 

Their description was not very well laid out.  Maybe Heather will take a look but I've been using nutritional supports for a long time (my son is 10) and I am always highly wary of anything that is made with protein isolates because they contain MSG by their composition.  Also, while glutamic acid may be necessary for proper cell functioning, the purpose of going on a gluten dairy free diet is, much of the time, to eat a low glutamate diet.  A prominent biomedical theory is that Glutamate/glutamic acid is what makes ASD children hyper, spacy and sensory dysregulated. 

 

If the manufacturer could explain it better it would be a wonderful service to parents. 


Just adding my own wariness.  Personally, I've spent thousands of dollars on supplements over the years.  If you feel satisfied and your own intuition tells you it is worth a try it is all part of trial and error.  Good luck in your decisions.

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Old 07-31-2012, 06:37 PM - Thread Starter
 
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Thank you livinglife. Honestly, figuring out this stuff is not my strong suit at all... The nutriiveda website you looked at probably has a slightly different formula. Pursuitofresearch.org has more info and somewhere they have a huge FAQ section explaining MSG and everything else. I read it but can't remember what it said. Basically the reason I'm interested in it isn't because any of it makes any sense to me, but because I've read that it has been useful for many families. Still, I am really skeptical though I'm sort of desperate right now and figuring things probably can't get a lot worse. The fact that there isn't a single mdc thread about it makes me all the more skeptical. Thank you for your input!
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Old 07-31-2012, 07:04 PM
 
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Hey, APToddlermomma...I understand being overwhelmed and searching for answers.  Take heart...some of your best guidance can come when you are open and looking for help.  You'll find what you need when you need it.  I do hope you find answers for your son.   I'll be curious to hear what Heather thinks of it.  I actually did read about it on the pursuitofresearch website and read their fact sheet.  Their explanation just seemed off...I wouldn't buy it with the information presented, unless someone at the company can clear up how they remove casein from whey (which is milk protein) and how they separate MSG from whey isolate.  I like to know the details, and their explanation was too vague for me.

 

Best....

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Old 07-31-2012, 07:26 PM
 
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Have you tried the SCD or the GAPS diet? They are usually recommended for people who are celiacs or whom can not tolerate gluten and the "gluten free" diet is not working as well as they would like, or they still have symptoms. We tried the SCD diet with dd(7) who is a aspie but we didn't see a big improvement, what has worked for her has been gfcf and corn free. We are getting a blood allergy test soon for dd, it is part of the Comprehensive Autism Panel we got from Great Plains Labs.

 

Good luck!


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Old 08-01-2012, 04:02 PM
 
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Originally Posted by APToddlerMama View Post

Thank you livinglife and heather! We are using Nordic naturals 3-6-9 but it says it has vitamin e derived from refined soybean oil. He has a true soy allergy and dairy intolerance but I always thought it wasn't an issue, but pulled it anyhow in case. I'm not sure if it's feingold or fail safe approved which is also why I'm pulling it at the moment. I'm seeing no difference however.
Good call on the nigghtshades Heather. He has a true tomato allergy...
Do you guys know anything about nutriiveda? I'm inclined to think its a scam, but curious if anyone has experience with it.

 

If there's a true tomato allergy and suspected potato issue--definitely cut all the nightshades and add them back in one by one (the ones that are not known to be an issue) to look for reactions.  But when adding in, go full force.

 

Did NOT know that about the 3-6-9 but also haven't used it for a few years.  Sorry!  Geesh! 

 

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Oh...forgot to ask but what did you experience with Prevnar Heather?

 

In a nutshell: it almost killed my son and we're not really sure why.  His immune deficiency is dx'd as "secondary" meaning "he acquired it post-birth" although I'm not REALLY sure how they determined that if there were no baseline tests at birth... kwim?  But it alludes to "the vaxes broke his immune system".  But he got so sick that after 2 weeks of his ped blowing me off and refusing to bother seeing him I took him to the local walk-in emergency clinic where they told me I was lucky he was alive as he was recovering from pneumonia.  :/  He had been cold to the touch one day, threw up enough mucous to clog his airway such that he stopped breathing in my arms another day.  Omg--worst few weeks of my life.  And stupid me: we gave him half the next round of shots (at 6mo) before swearing them off forever.  

 

 

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I've never heard of nutriiveda.  Naturally I was curious....so I looked them up online.  I read their description of the ingredients.  But, what I still don't understand after reading the description, is how their whey protein isolate can be casein free and free of MSG...."Isolate" proteins free MSG through the process of making the protein.  Do they filter out both the casein and the msg?  If so, do they have an independent lab certify that that is the case? 

 

Their description was not very well laid out.  Maybe Heather will take a look but I've been using nutritional supports for a long time (my son is 10) and I am always highly wary of anything that is made with protein isolates because they contain MSG by their composition.  Also, while glutamic acid may be necessary for proper cell functioning, the purpose of going on a gluten dairy free diet is, much of the time, to eat a low glutamate diet.  A prominent biomedical theory is that Glutamate/glutamic acid is what makes ASD children hyper, spacy and sensory dysregulated. 

 

If the manufacturer could explain it better it would be a wonderful service to parents. 


Just adding my own wariness.  Personally, I've spent thousands of dollars on supplements over the years.  If you feel satisfied and your own intuition tells you it is worth a try it is all part of trial and error.  Good luck in your decisions.

 

I didn't get to look at the site and had only heard of them in passing but this looks like what would come to my mind, too--including wariness.

 

 

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Hey, APToddlermomma...I understand being overwhelmed and searching for answers.  Take heart...some of your best guidance can come when you are open and looking for help.  You'll find what you need when you need it.  I do hope you find answers for your son.   I'll be curious to hear what Heather thinks of it.  I actually did read about it on the pursuitofresearch website and read their fact sheet.  Their explanation just seemed off...I wouldn't buy it with the information presented, unless someone at the company can clear up how they remove casein from whey (which is milk protein) and how they separate MSG from whey isolate.  I like to know the details, and their explanation was too vague for me.

 

Best....

 

I'm in the "want to know the nuts and bolts science of it" camp, myself.  Sorry--not taking your word for it. (meaning the company selling it)

 

Quote:
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Have you tried the SCD or the GAPS diet? They are usually recommended for people who are celiacs or whom can not tolerate gluten and the "gluten free" diet is not working as well as they would like, or they still have symptoms. We tried the SCD diet with dd(7) who is a aspie but we didn't see a big improvement, what has worked for her has been gfcf and corn free. We are getting a blood allergy test soon for dd, it is part of the Comprehensive Autism Panel we got from Great Plains Labs.

 

Good luck!

 

FWIW, we found that gfcf, soy and corn-free was a huge help to us, too.  And we later found that it's not just corn, but corn syrup.  AND, notsomuch corn syrup but metals (which may have been the source of the reaction from the vaxes).  Apparently 60% of corn syrup is still cured or manufactured in metal tubs that leach mercury into the corn syrup.  So we noticed that he didn't react every time he had corn syrup but every time he reacted corn syrup was involved.  We suspect he's just THAT metal sensitive.  Many years later we did Feingold and found the salicylate thing and as of this post, I'm going to consider nightshades for him (and I), too... so, ummmm... THANKS!  (because I was considering them for me based on highly infrequent eating of the few that are Feingold safe and highly infrequent arthritic pain in my hips).


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Old 08-01-2012, 05:19 PM - Thread Starter
 
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Im on my phone and my quote button won't work but....

Livinglife--- thank you for the encouragement smile.gif. I really needed that. Also thank you for your opinion on NV. The last thing I want to do is spend a lot of money screwing things up more.

Mittsy-- I haven't tried gaps or scd. If I can get myself convinced to try one more diet, scd will probably be it. I just *know* there is a huge dietary component to this but I'm starting to feel a little crazy trying all these diets.

Heather-- wow I am so sorry that happened with the prevnar. That must have been so scary! As far as the corn, we actually had him corn free for over two years, completely corn free and I cook pretty much everything from scratch (not really by choice but thanks to all of out issues) so he wasn't getting any traces even. We had let him start back on corn and hadnt noticed a change at all really and now that we've had it out for the past two weeks I'm still noticing no changes. He's been free of soy, dairy, and gluten for over 2.5 years and we've never slipped up on that. So weird. I thought that 10 days into fail safe we'd have more of an idea of what was going on. I was just convinced that corn, coconut, or citrus were going to be the obvious culprits but his poop is all wonky still and his mood and behavior are making me feel like I'm living in hell greensad.gif. We are all so miserable because he's so miserable. He's reminding me of all the kids who I've had on my caseload over the years with ODD and BPD diagnoses which was exactly our life before cutting dairy. I am dying to figure this out. Thank you for all your help! It's truly appreciated smile.gif.
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Old 08-01-2012, 09:27 PM
 
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I am a big fan of allergy testing, I have multiple food and other allergies, and the testing and the help of a great allergist have really helped.  So here is my take on it.  Your body is like a bucket.  Things that your body is allergic to fill the bucket with histamines.  Bad allergens can make it overflow immediately, weak allergens, just fill it a little more.  Eventually, the bucket overflows and your body reacts (puffy eyes, snotty nose, diff. breathing, diarrhea, vomiting, swelling, etc).  So if you want it to stop, you have to stop filling the bucket.  The big things were easy to figure out, the little ones not so much.  For example, I can not have even a little coconut ever.  But, on a good day I can eat peas without a problem, on a high pollen count day, I react to peas.  I am always allergic to them, they just don't "fill my bucket" like coconut does.

 

I am also allergic to a lot of base products (i.e. due to antibiotic allergies I will have a reaction to non-organic beef, but do not test positive for a beef allergy).  Because of some of my food allergies, I have to beware of "natural flavors."  I am allergic to the Casein in cow milk, but I am fine with goat milk and goat cheese.  The allergy testing REALLy helped us narrow down the problems, and then I was able to avoid a lot of things.

 

Even now, I get crabby and cranky when my allergies are out of control, so it does not surprise me your son does as well.


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Old 08-01-2012, 11:07 PM - Thread Starter
 
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I am a big fan of allergy testing, I have multiple food and other allergies, and the testing and the help of a great allergist have really helped.  So here is my take on it.  Your body is like a bucket.  Things that your body is allergic to fill the bucket with histamines.  Bad allergens can make it overflow immediately, weak allergens, just fill it a little more.  Eventually, the bucket overflows and your body reacts (puffy eyes, snotty nose, diff. breathing, diarrhea, vomiting, swelling, etc).  So if you want it to stop, you have to stop filling the bucket.  The big things were easy to figure out, the little ones not so much.  For example, I can not have even a little coconut ever.  But, on a good day I can eat peas without a problem, on a high pollen count day, I react to peas.  I am always allergic to them, they just don't "fill my bucket" like coconut does.

I am also allergic to a lot of base products (i.e. due to antibiotic allergies I will have a reaction to non-organic beef, but do not test positive for a beef allergy).  Because of some of my food allergies, I have to beware of "natural flavors."  I am allergic to the Casein in cow milk, but I am fine with goat milk and goat cheese.  The allergy testing REALLy helped us narrow down the problems, and then I was able to avoid a lot of things.

Even now, I get crabby and cranky when my allergies are out of control, so it does not surprise me your son does as well.

Thank you for your post! I should know all of this but sometimes it doesn't occur to me. I've talked about the bucket theory myself to a few people just in the past month about myself yet for some reason I'm forgetting it applies to DS as well. I also have one pretty severe allergy and then others that are more mild and vary in severity at different times. I guess since he's been through allergy testing I was thinking all his truly allergenic foods were out, but a few years have passed and I wouldn't be surprised if he's developed some new ones. I never thought of the non-organic meats being an issue but I have to drive far for organic beef so I rarely buy it. I'm going to switch over though...good call! Thank you. I am so hoping it is something as simple as having him re-tested and easily figuring out that something in his diet has been bothering him. I've used this allergist for my younger DS and he doesn't like to go fishing for foods unless I've seen an obvious reaction. Did your dr do skin tests? That's what this office does though ds1 has had the RAST test in the past as well.
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Old 08-02-2012, 03:31 PM
 
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I have lots of thoughts, hope a few are helpful.  Just so you know, our DS has terrible reflux (on prevacid from 2-11 months), has a number of food allergies and intolerances, and has a few delays (primarily language). 

 

1. Just a regular old fashioned skin prick allergy test made a HUGE difference for us.  I tried a series of elimination diets and have realized that, because it take SO long for foods to truly leave the system, it is almost impossible to do it well for long enough.  So, for example, DS was getting really bad eczema and I went off a series of suspected allergens for 6 weeks each.  The eczema faded in and out and we just couldn't tie it clearly to a specific food.  The allergy test showed a massive reaction to egg (which I had cut out for 6 weeks and it didn't seem to help that much).  We cut all egg again and 3 months later his skin was 100% clear and he clearly felt so much better. 

 

2. I would ask to have a blood panel done looking for vitamin and mineral absorption problems.  Especially since he was on zantac which is increasingly associated with vitamin B absorption issues.  I am now sort of convinced that a lot of our DS's current tummy problems were created by the prevacid.  I don't think we had a choice, he needed the meds, but I really think it totally messed up his intestinal balance.  We have been doing pro-biotics and trying to eat lots of good gut foods (sourrkraut etc).  It has definitely helped with his stomach. 

 

3. DS is also intolerant to dairy and we just did a trial to see if he is any better.  He's not.  LOL.  He seemed fine for a few days but over time his behavior and focus have fallen off a cliff.  I totally agree with the allergy bucket idea!  I think that's why it has been so difficult to figure out what is triggering DS. 

 

Good luck with everything!  I know how confusing and hard these kinds of issues can be!

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Old 08-02-2012, 08:00 PM
 
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I think the bucket is a good analogy, too.  I have had times were I know I over did it with something like dairy that I can have in limited quanities.  Other things like egg whites and corn are pretty much never.  

 

Quality also makes a difference.  I am vegetarian, but I have found although I have an allergy to milk (I think it was to the whey or protein) I can handle organic, grass fed cow's milk/dairy better than conventional.  I was told by someone that meat, which always left me feeling ill has traces of what the animal ate in it, so since I am intolerant of corn and that is common in cow feed, I think I might react.  Also, some, but not all chickens have albumin in the muscle, which can be like egg causing a cross reaction.  

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Old 08-03-2012, 08:38 PM
 
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yes, we just did the regular scratch testing.  We centered it on foods, since that was my primary problem.  We got a lot of them, then tested for environmental things later.  Over the years, we have figured things out by process of elimination.  (i.e. I am not allegic to cats, but had a reaction one time petting a friends cat.  Turns out it was an indoor/outdoor cat, so I was probably reacting to the grass pollen on the cat's coat.  I personally avoid beef altogether, and onl eat organic poultry and fresh caught seafood (I live close to the ocean so it is not a problem).  It was also drilled into me as a child to never eat anything if I could not identify the ingredients (to this day I still won't eat a casserole).

 

I actually went through allergy shots for the environmental allergens that could not be avoided.  I know some people really hate the concept of allergy shots, but our goal was to get my eczema under control and to not have to take allergy meds every day for the rest of my life.  It worked, I my eczema is clear most of the time, I am off inhalers, and I only have to take benadryl when I need it.  I also had a wonderful allergist from south africa who understood that the goal was first control and comfort, and eventually to be able to maintain that off daily medication.


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Old 08-04-2012, 12:20 PM - Thread Starter
 
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Just wanted to say THANK you all so much... I will be back to reply as soon as I can get on my computer. My phone is being a little wonky.
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Old 08-04-2012, 05:25 PM - Thread Starter
 
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I have lots of thoughts, hope a few are helpful.  Just so you know, our DS has terrible reflux (on prevacid from 2-11 months), has a number of food allergies and intolerances, and has a few delays (primarily language). 

 

1. Just a regular old fashioned skin prick allergy test made a HUGE difference for us.  I tried a series of elimination diets and have realized that, because it take SO long for foods to truly leave the system, it is almost impossible to do it well for long enough.  So, for example, DS was getting really bad eczema and I went off a series of suspected allergens for 6 weeks each.  The eczema faded in and out and we just couldn't tie it clearly to a specific food.  The allergy test showed a massive reaction to egg (which I had cut out for 6 weeks and it didn't seem to help that much).  We cut all egg again and 3 months later his skin was 100% clear and he clearly felt so much better. 

 

2. I would ask to have a blood panel done looking for vitamin and mineral absorption problems.  Especially since he was on zantac which is increasingly associated with vitamin B absorption issues.  I am now sort of convinced that a lot of our DS's current tummy problems were created by the prevacid.  I don't think we had a choice, he needed the meds, but I really think it totally messed up his intestinal balance.  We have been doing pro-biotics and trying to eat lots of good gut foods (sourrkraut etc).  It has definitely helped with his stomach. 

 

thank you!  nak... anyhow that is very helpful!  i will look into the zantac thing.  i didn't know that.  in 2009 when a research study on malabsorption came out, i had ds's vitamin d, zinc, and something else tested and they were all normal.  i really wanted to have him looked at again though because i never asked to see the labs and i'm wondering if they were actually on the low end of normal and am also curious where they're at now.  he was still nursing then and i wonder if that makes a difference.

 

that is really good to know about the skin test too.  there are certain foods that i'm allergic to mildly where my only symptom at times is that my ears itch, so its possible that ds is reacting to something that we aren't noticing.  what probiotic do you use? 

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I think the bucket is a good analogy, too.  I have had times were I know I over did it with something like dairy that I can have in limited quanities.  Other things like egg whites and corn are pretty much never.  

 

Quality also makes a difference.  I am vegetarian, but I have found although I have an allergy to milk (I think it was to the whey or protein) I can handle organic, grass fed cow's milk/dairy better than conventional.  I was told by someone that meat, which always left me feeling ill has traces of what the animal ate in it, so since I am intolerant of corn and that is common in cow feed, I think I might react.  Also, some, but not all chickens have albumin in the muscle, which can be like egg causing a cross reaction.  

thank you!  i've always wondered that about traces of foods in meats...  good to know!

 

heather or anyone who might know the answer to this... just before dinner we started with one zyme prime digestive enzyme.  ds ate, laid down, and went to sleep literally 7 hours earlier than normal and by himself which never happens.  insomnia and lack of sleep are two of our biggest issues.  coincidence?  ive never heard of enzymes doing this but i cant tell you how odd it is that hes sleeping.  thanks everyone and sorry to be nak.  i know its annoying to read.

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Old 08-04-2012, 05:28 PM - Thread Starter
 
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yes, we just did the regular scratch testing.  We centered it on foods, since that was my primary problem.  We got a lot of them, then tested for environmental things later.  Over the years, we have figured things out by process of elimination.  (i.e. I am not allegic to cats, but had a reaction one time petting a friends cat.  Turns out it was an indoor/outdoor cat, so I was probably reacting to the grass pollen on the cat's coat.  I personally avoid beef altogether, and onl eat organic poultry and fresh caught seafood (I live close to the ocean so it is not a problem).  It was also drilled into me as a child to never eat anything if I could not identify the ingredients (to this day I still won't eat a casserole).

 

I actually went through allergy shots for the environmental allergens that could not be avoided.  I know some people really hate the concept of allergy shots, but our goal was to get my eczema under control and to not have to take allergy meds every day for the rest of my life.  It worked, I my eczema is clear most of the time, I am off inhalers, and I only have to take benadryl when I need it.  I also had a wonderful allergist from south africa who understood that the goal was first control and comfort, and eventually to be able to maintain that off daily medication.

thank you :).  i used to do the allergy shots too.  they were really seeming to help but i developed two autoimmune diseases while doing the shots and became suspicious that they may have been the cause.  like everything else, there is no solid research on that, but my ANA is so high now and these new autoimmune issues are affecting my quality of life more than my allergies were so i've stopped them.  its a bummer because being on allergy meds is difficult too.

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Old 08-04-2012, 09:24 PM
 
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heather or anyone who might know the answer to this... just before dinner we started with one zyme prime digestive enzyme.  ds ate, laid down, and went to sleep literally 7 hours earlier than normal and by himself which never happens.  insomnia and lack of sleep are two of our biggest issues.  coincidence?  ive never heard of enzymes doing this but i cant tell you how odd it is that hes sleeping.  thanks everyone and sorry to be nak.  i know its annoying to read.

 

I've honest-to-God never heard of that, either.  Usually enzymes give them more energy because it frees up the body from some of the energy used in the digestive process.  How was he when he woke? (and when DID he wake?)  

 

I almost wonder if his sleep issues had to do with undigested proteins settling in his nervous system and causing an underlying sensory issue that toyed with his ability to rest; but I don't think I'd have imagined a single dose of enzyme to produce such a profound effect so quickly.  If there were no negatives in his behavior, I'd probably keep them up and watch him.  If he continues to sleep well for a week, I'd take him off of them for a week and see if it goes back to being disrupted and then start them again to definitively tie it to the enzymes.


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Old 08-04-2012, 11:22 PM - Thread Starter
 
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I've honest-to-God never heard of that, either.  Usually enzymes give them more energy because it frees up the body from some of the energy used in the digestive process.  How was he when he woke? (and when DID he wake?)  

I almost wonder if his sleep issues had to do with undigested proteins settling in his nervous system and causing an underlying sensory issue that toyed with his ability to rest; but I don't think I'd have imagined a single dose of enzyme to produce such a profound effect so quickly.  If there were no negatives in his behavior, I'd probably keep them up and watch him.  If he continues to sleep well for a week, I'd take him off of them for a week and see if it goes back to being disrupted and then start them again to definitively tie it to the enzymes.

So strange. He slept 2.5 hours and the woke up on his own. I honestly was getting worried they were tainted or something. I mean, seriously, this kid doesn't sleep. I bought them off Amazon instead of direct so i got a bit paranoid. I am now laying in bed with him waiting for the melatonin to kick in. He was groggy and crabby for the first 20 min he was awake and then in a good mood. Had another enzyme with a snack and it seemed to have no impact. We will see I guess....
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Old 08-09-2012, 03:12 AM
 
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Hi.  This thread has some fantastic info.  Thank you to everyone you took the time to share their stories!

 

I wanted to share a couple links that might be helpful.  The information is related to health issues and autism, however there are many individuals without autism who could benefit from the info:

http://www.enzymestuff.com/ (great site and has a lot of info re the role of each enzyme and other topics related to a good healthy gut)

 

http://www.autism.com/pdf/providers/adams_biomed_summary.pdf  (provides great info re the role of enzymes, probiotics, supplements and other biomedical and dietary interventions used by parents)

 

http://www.autism.com/index.php/video/c/nutrition  (Webcasts re Special diets; on the left side of the page there are links to other webcasts that discuss behavior and gut)
 

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Old 08-14-2012, 02:17 PM - Thread Starter
 
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Thank you Buttercup! I'm going to check them out right now. We started using enzymes and I think they're helping quite a bit. Will be interested in reading more smile.gif.
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Old 08-23-2012, 07:43 AM - Thread Starter
 
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Just wanted to post an update. It's hard to say for sure what has made the huge improvement for ds, but in the past week, he's been a totally different kid. We still have corn, potatoes, citrus, and coconut out of his diet (have added sals and fish oil back), and have been doing Epsom salt baths very day and digestive enzymes. So, one or all of these things is helping a lot. He's tantruming and raging probably 5% of what he was before. Yay! Thanks everyone for your help!! Ill try to update as we add foods back in too. We are also having allergy testing done next month.
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Old 08-23-2012, 11:02 AM
 
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Did his digestion also improve with his behavior? You had noted before that his stools had been filled with undigested food. I'd be curious to know!  Curious too how you threw epsom salts into the mix.  He would be absorbing magnesium from the salt baths, a natural relaxant, calming agent, and histamine reducer....the epsom salt absorbs toxins as well.  Did you do this on instinct?  Great idea!

 

It is interesting isn't it how dramatic the improvements can be. I wouldn't "mess" with it though if I were you by reintroducing foods right now. Get comfortable living in the "new normal" for a while.  Over the years, i've seen for us, that there isn't just "one" thing, or "one magic cure all".  ASD has multifactoral causes and health, digestion and allergy issues that walk along side that either make worse or even cause symptoms.  If it is working, keep doing it.  Even if he can eat some of these removed foods why take a chance right now. 

I also just want to commend you on your determination to figure out how to help your child.  He's a lucky guy and you're a great mom!

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