Re: Is SCD for us? HELP!

[Guest guest]

Amy,

I'd have to say that the biggest red flag in your post was the carb addiction. I

don't know if I'd trust the test results..... something is not right here! He is

hooked on those foods because his brain/body is getting something out of it.....

ie; a big hit of serotonin or something. The sensory issues he has (which even

though the pattern doesn't seem to make sense, it does seem clear that he has

some sort of sensory problems) mean that there is some disruption in

neurotransmitters going on...... for what reason, it's unclear. But, I'd think

it's obvious you need to steer him away from the starchy carbs he's craving. It

sounds like the starches allowed on GF/CF have actually made matters worse.

Whenever I hear about a kid having that " heroin addict " behavior for things like

regular bread, I'm thinking.... it's the gut bugs. They're telling him what he

needs. I'm not sure about cases where the tests might be wrong or

misleading...... but...... like I said, SOMEthing is NOT right in this picture!

I might be a little predjudiced but...... I'd say ignore the test results and do

SCD anyway. Being so limited, his current diet can't be a good thing. My

daughter didn't have any obvious GI issues when we started either (she has

multiple neurologically based disabilities, but not autism)....... and yet SCD

has made a positive difference in seizure control. You're probably thinking that

his severe self limiting and the gagging with meat, etc. that you've seen will

make it terribly difficult to do this diet, but I promise you there is a way.

I'd suggest making a batch of the fabulous cashew butter muffins from the

pecanbread website...... they're very fluffy and " breadlike " . There's all kinds

of ways to " sneak " veggies and even meats into muffins and pancakes..... pureed

and mixed in so they are totally disguised. They've fooled the pickiest of the

picky! Quite a few other families here have been in the same boat.... with

SERIOUSLY picky kids that they thought would NEVER eat any SCD foods..... and

many of them have been surprised.

My best advice? Listen to your Mommy instincts (which I believe have a lot more

weight than test results and doctor's opinions:)) .....and do what you feel is

right for him.

Patti, mom to Katera, SCD 14 months

Is SCD for us? HELP!

recently got the rest of my

son's lab tests back. We found that as per the urine and stool

tests, he has no dybiosis at all. His yeast and bacterial levels

are all within normal ranges. Note also that he has never really

had an obvious, apparent gut/bowel issue either. I spoke at length

with his doc (Dr. Usman) about the test results and what it means

for us going SCD. But I am still unsure.

Sorry so long - but I am really torn up about this. Any advice will

be GREATLY appreciated

All the best,

Amy

[Guest guest]

>>>he placed a small piece of grilled chicken breast on his tounge.

He immediately began to gag and then vomited.

Here are some ideas:

Putting a food in your mouth is completely different from swallowing

it. Swallowing means you are putting in in your body! It also

requires a different set of muscles and feelings than just having it

in your mouth. Meat can be tough too. My younger son had a time with

meat. He had GERD and a gagging up reflex. He acutally improved with

enzymes about the third month. I don't know what helped exactly

except maybe it helped to quiet his nervous system down and the food

was better digested...not as chuncky in the gut.

How does your son do with soft or squishy foods? Breads and nut

butters are squishy and don't sit as chunks in the gut. Does your son

do better if the meat is broken up really fine or cooked so it is

really tender. If you are interested in enzymes, here is the site

www.enzymestuff.com

The smell is another sensory item you hit on. I am very sensitive to

smells, and smell has a lot to do with tastes and eating. That might

be something to explore.

>>>The docs think it might be an eating disorder.

Might be worth exploring. Eating disorders have a component of

control to them (the person is trying to establish some control in

their world and environment).

My son was very logical/literal. So when he would say, " I hate this

food. " I would answer, " That's fine, you can hate it. But you still

need to eat it to stay healthy. I eat foods I don't like too. So do

most people. "

When he would say, " I will not eat this broccoli. " I would say, " Fine.

But you need to eat a green vegetable. Which green vegetable do you

want. That is the next thing to eat. It is green vegetables turn. " I

used a system of each food group gets a 'turn' because kids

understand 'taking a turn'.

When my son would say, " I want a banana instead. " I would say, " Bananas

are good. Of course you can have a banana when it is the Fruit

Group's turn. The next time it is Fruit's turn, you can have this

banana. " ...and so on. The idea is to establish some law of nature or

third party you both are abiding by so your child isn't in a power-

struggle with YOU. good luck with this.

.

[Guest guest]

Patti -

Thank you for your thoughtful reply. I agree that his body is

definitely trying to tell me something! Your point that the

starches allowed on the GF/CF is WELL taken!

Like your child, my son is not " classically " autistic. He has been

diagnosed with abnormal EEGs and is currently under the care of a

neurologist. His symptoms may be all related to that - or not.

They are mailnly autistic-like symptoms, though - singificantly

delayed language, moderate to severe sensory processing and

regulation issues. However he is - and always has been - a very

well-connected (attached) little boy, big cuddler, wicked sense of

humor.

I think you are right about just doing it. We have definitely

psyched pourselves up for SCD - even have our 6 year old on board

(promised him he could still eat fries once in a while...just not at

home or infront of his brother). We all intend to be SCD at home.

By the way, the test results were all obtained through Dr. Anju

Usman and Great Smokies Labs - we did the Comprehensive Digestive

Stool Analysis and a urine analysis, the Metabolic Analysis Profile.

Thanks again!

Amy

> Amy,

> I'd have to say that the biggest red flag in your post was the

carb addiction. I don't know if I'd trust the test results.....

something is not right here! He is hooked on those foods because his

brain/body is getting something out of it..... ie; a big hit of

serotonin or something. The sensory issues he has (which even though

the pattern doesn't seem to make sense, it does seem clear that he

has some sort of sensory problems) mean that there is some

disruption in neurotransmitters going on...... for what reason, it's

unclear. But, I'd think it's obvious you need to steer him away from

the starchy carbs he's craving. It sounds like the starches allowed

on GF/CF have actually made matters worse. Whenever I hear about a

kid having that " heroin addict " behavior for things like regular

bread, I'm thinking.... it's the gut bugs. They're telling him what

he needs. I'm not sure about cases where the tests might be wrong or

misleading...... but...... like I said, SOMEthing is NOT right in

this picture!

>

> I might be a little predjudiced but...... I'd say ignore the test

results and do SCD anyway. Being so limited, his current diet can't

be a good thing. My daughter didn't have any obvious GI issues when

we started either (she has multiple neurologically based

disabilities, but not autism)....... and yet SCD has made a positive

difference in seizure control. You're probably thinking that his

severe self limiting and the gagging with meat, etc. that you've

seen will make it terribly difficult to do this diet, but I promise

you there is a way. I'd suggest making a batch of the fabulous

cashew butter muffins from the pecanbread website...... they're

very fluffy and " breadlike " . There's all kinds of ways to " sneak "

veggies and even meats into muffins and pancakes..... pureed and

mixed in so they are totally disguised. They've fooled the pickiest

of the picky! Quite a few other families here have been in the same

boat.... with SERIOUSLY picky kids that they thought would NEVER eat

any SCD foods..... and many of them have been surprised.

>

> My best advice? Listen to your Mommy instincts (which I believe

have a lot more weight than test results and doctor's

opinions:)) .....and do what you feel is right for him.

>

> Patti, mom to Katera, SCD 14 months

> Is SCD for us? HELP!

> recently got the rest of my

> son's lab tests back. We found that as per the urine and stool

> tests, he has no dybiosis at all. His yeast and bacterial

levels

> are all within normal ranges. Note also that he has never

really

> had an obvious, apparent gut/bowel issue either. I spoke at

length

> with his doc (Dr. Usman) about the test results and what it

means

> for us going SCD. But I am still unsure.

>

> Sorry so long - but I am really torn up about this. Any advice

will

> be GREATLY appreciated

>

> All the best,

>

> Amy

>

>

>

>

[Guest guest]

-

Thanks for your words of confidence. We actually have just started

Sam on enzymes - from Houston, we are using the AFP Peptizyde and

the HN Zyme-Prime. We've been using them for just a few weeks now.

We've tried a bunch of things regarding texture, size, etc. He

loves crunchy potato chips or veggie chips. He adores french fries,

of course, but particularly seeks out the really well-done ones. He

also likes mushy texture - he likes nut butters so much that he eats

them straight from the jar. He will also eat applesauce once in a

GREAT while. The other few things he will eat are the occasional

banana, GF/CF waffles, GF/CF pizza, GF/CF chicken nuggets (but of

course, no plain chicken!).

No consistent pattern.

Fortunately his SLP in preschool has a background in feeding issues

(interned at the children's hospital). Sam starts school in a few

weeks and we will be consulting with her on this too.

The control thing is right on the money. He is so stubborn about

taking a bite if he does not want to that he is often immune to

bribes - even for a Mc's french fry (the ULTIMATE bribery

tool). We don't want power struggles over food, so I never force

him to eat anything. Thus he usually goes without eating dinner (I

do not make him special food for dinner - he gets what we get).

I recently purchased a book called " Just Take a Bite " and it looks

to be quite interesting - it is more of the sensory/theraputic

approach to feeding issues. For exapmle, they espouse regular, set

eating schedules, a clear, clutter-free eating environment (HA!),

and so on.

The ultimate irony is that he is still in the 90th percentile for

height and 75th percentile for weight. Go figure. (but we KNOW his

overall nutrition is in the crapper).

Thanks again -

Amy

> >>>he placed a small piece of grilled chicken breast on his

tounge.

> He immediately began to gag and then vomited.

>

> Here are some ideas:

>

> Putting a food in your mouth is completely different from

swallowing

> it. Swallowing means you are putting in in your body! It also

> requires a different set of muscles and feelings than just having

it

> in your mouth. Meat can be tough too. My younger son had a time

with

> meat. He had GERD and a gagging up reflex. He acutally improved

with

> enzymes about the third month. I don't know what helped exactly

> except maybe it helped to quiet his nervous system down and the

food

> was better digested...not as chuncky in the gut.

>

> How does your son do with soft or squishy foods? Breads and nut

> butters are squishy and don't sit as chunks in the gut. Does your

son

> do better if the meat is broken up really fine or cooked so it is

> really tender. If you are interested in enzymes, here is the site

> www.enzymestuff.com

>

>

> The smell is another sensory item you hit on. I am very sensitive

to

> smells, and smell has a lot to do with tastes and eating. That

might

> be something to explore.

>

>

> >>>The docs think it might be an eating disorder.

>

> Might be worth exploring. Eating disorders have a component of

> control to them (the person is trying to establish some control in

> their world and environment).

>

> My son was very logical/literal. So when he would say, " I hate

this

> food. " I would answer, " That's fine, you can hate it. But you still

> need to eat it to stay healthy. I eat foods I don't like too. So

do

> most people. "

>

> When he would say, " I will not eat this broccoli. " I would

say, " Fine.

> But you need to eat a green vegetable. Which green vegetable do

you

> want. That is the next thing to eat. It is green vegetables turn. "

I

> used a system of each food group gets a 'turn' because kids

> understand 'taking a turn'.

>

> When my son would say, " I want a banana instead. " I would

say, " Bananas

> are good. Of course you can have a banana when it is the Fruit

> Group's turn. The next time it is Fruit's turn, you can have this

> banana. " ...and so on. The idea is to establish some law of nature

or

> third party you both are abiding by so your child isn't in a power-

> struggle with YOU. good luck with this.

>

> .