Re: husband wants to take Ds off SCD. what to do?

[Guest guest]

,

I hope you'll reconsider giving up just yet. As I read your post, there's a few

things that jump out as red flags to me. I understand the difficulty of the

intro diet...... and maybe that would be ideal to try, but I totally understand

why you wouldn't want to, even for just one or two days (though that's all you'd

need to do). Anyway, don't worry too much about that part.

Whenever we see progress/gains, along with negative symptoms on this diet, we

look at that as a good thing for the long run...... it usually indicates

die-off. Now, why he would STILL have any bad gut pathogens hanging on after

four months is a puzzle..... unless there were some illegals or too much starch

in some form that is helping them to hang on for dear life.

What jumps out to me is all the cashew butter. I know it may be the only nut he

can tolerate..... and it does give a great result in the baked goods,

especially those muffins...... but cashews ARE the starchiest of the nuts, and

Elaine has advised before that they should not be used in large quantities for

beginners. For some, it might not be a big issue...... but for a kid who is

still self limiting and eating so few other foods, this might factor in. Also, I

was just wondering what brand you're using.... or are you making your own?

Another red flag to me is the bacon..... you said: << bacon (soaked in water

to remove the sugar)>>. I'm just curious, because I have just never heard of

this being done before. How do you know that the soaking removes the sugar? I

don't mean to come off like I'm challenging you, but I've haven't heard this

method being recommended on our list before. Is there no source of sugar free

bacon in your area? I don't use bacon for Katera, so I've never looked for it.

I know you've probably made sure of this but I just thought I'd ask..... are

your bananas really, really ripe? Well spotted with dark brown spots on the skin

and no hint of green? Also..... is he eating raw apples? You mentioned

<<apples with cashew butter>> ..... so it sounded more like they were probably

raw. If so.... it might be too hard for him to digest raw apples right now,

especially if they aren't peeled .....but I'm sure you've thought of that

already... so don't mind me. Just trying to cover ever base I can think of.

You don't mention any yogurt (nut or goat), so I'm assuming you're not using

that. In that case, is he getting an acidophilus supplement? And is it just

acidophilus ONLY, or with other bacterial strains in a probiotic? If he's not

getting any " good guys " down there to replace the bad, you could have a yeast

overgrowth situation that's just keeping him from progressing further..... so

acidphilus supps are really important. Can you tell us what his other

supplements are, too? Just curious.... I know you've made sure they're all

legal but maybe something will jump out.

Is his juice begin diluted still? What kind of juice? Apple, grape, orange? What

brand? Just wondering. I hope I'm not throwing too much at you.... I know

you're already frustrated and overwhelmed, so I don't mean to be nit-picking but

I just want you to be successful. There's no use putting out all this effort if

there's something in the mix that is undermining your efforts.

Hang in there..... I hope we can help you and kinda hold you up at the same

time. I can understand how tempting it must be to just let it go. I did a long

haul.... 2 & 1/2 years..... with Katera on a MUCH stricter special diet which

really wasn't working well (for seizure control) throughout the final year. I

had to weigh every speck of food she ate and plan every meal on a computer

program, making sure she never got a bite of ANYthing off limits. By the end of

that time, I was beyond out of my mind...... about to jump off a cliff. It was

soooo stressfull and the entire responsibility was on me.... then we went right

to SCD so I've done one diet or the other for the past four years solid.

(Picture me pulling all my hair out!) Anyway, I can truly relate to how burned

out one can get and how difficult it is to go through one more day of it, when

things aren't working. (((((((((((((((((((()))))))))))))))))))))

Patti, mom to Katera, SCD 16 months

husband wants to take Ds off SCD. what to do?

My husband is not convinced this diet is helping Jack, and thinks we

should let him have a " more varied diet. " We've been doing it for

about 4 months now, and his stools are worse than when we started.

But his speech has improved dramatically, and he's more interactive

with us. He was great behavior-wise for about 2 months this past

summer. Then at the end of August he started having tantrums again,

hitting when he doesn't get his way -- all stuff that had

disappeared. We were never able to successfully do the intro diet.

Jack wouldnt eat the food and I wasn't willing to starve him. We

jumped right in. Now he practically lives on cashew muffins,

bananas, bacon (soaked in water to remove the sugar) apples with

cashew butter, juice. Sometimes he'll have cheese or pizza on nut

butter pancakes. I make him chicken and steak that he will sometimes

eat, but now he is testing us on everything and doesn't want to eat

what we want him to, won't try new things. I just discovered the

saccharin sweetener I give him occasionally has dextrose in it, so

that could be a problem, but why are his stools like brownie mix at

best when they were better formed BEFORE we started SCD and he was

eating lots of complex sugars? I really just want to cry. I can't

account for his behavior and no one else wants to continue this

diet. My husband thinks any gains Jack has made have come from time,

or Jack just developing on his own, not the diet or supplements we're

giving him. What do you think I should do?

mom to Jack ASD almost 4, 4 months on SCD

[Guest guest]

Thanks Patti,

I don't want to give up yet, but my husband does. How do I convince

him, especially when the stool is worse, and his behavior has slid

backward? Is the stool worsening from food that's too hard to

digest, or from bacteria hanging on? I know the yeast has flared

back up, I can tell from the bumps on his skin, and red ring around

the anus (sorry.) The apples are raw. He won't eat cooked fruit. I

thought I had that conquered when I cooked apples and made fruit

leather, but I guess that's too advanced now too. Sometimes the

bananas have brown spots but still some green. I thought as long as

there were spots it was OK. I got the bacon tip from an atkins

website. I can't find sf bacon around here and he loves it. We're

using welch's white and purple grape juice, always diluted. And

Tropicana original OJ. I could switch from cashew butter to almoind

butter. If I don't do the intro phases, will his stomach ultimately

heal, but maybe it will just take longer? We give him the custom

probiotics acidophilus from Harry as recommended. But since the

directions say to give it on any empty stomach, we sometimes miss a

day or two. (I try to give it to him before he gets up and sometimes

forget.) Does this give you any more insight? Thanks for your

help!

> ,

> I hope you'll reconsider giving up just yet. As I read your post,

there's a few things that jump out as red flags to me. I understand

the difficulty of the intro diet...... and maybe that would be ideal

to try, but I totally understand why you wouldn't want to, even for

just one or two days (though that's all you'd need to do). Anyway,

don't worry too much about that part.

>

> Whenever we see progress/gains, along with negative symptoms on

this diet, we look at that as a good thing for the long run...... it

usually indicates die-off. Now, why he would STILL have any bad gut

pathogens hanging on after four months is a puzzle..... unless there

were some illegals or too much starch in some form that is helping

them to hang on for dear life.

>

> What jumps out to me is all the cashew butter. I know it may be the

only nut he can tolerate..... and it does give a great result in the

baked goods, especially those muffins...... but cashews ARE the

starchiest of the nuts, and Elaine has advised before that they

should not be used in large quantities for beginners. For some, it

might not be a big issue...... but for a kid who is still self

limiting and eating so few other foods, this might factor in. Also, I

was just wondering what brand you're using.... or are you making

your own?

>

> Another red flag to me is the bacon..... you said: << bacon

(soaked in water to remove the sugar)>>. I'm just curious, because I

have just never heard of this being done before. How do you know that

the soaking removes the sugar? I don't mean to come off like I'm

challenging you, but I've haven't heard this method being recommended

on our list before. Is there no source of sugar free bacon in your

area? I don't use bacon for Katera, so I've never looked for it.

>

> I know you've probably made sure of this but I just thought I'd

ask..... are your bananas really, really ripe? Well spotted with

dark brown spots on the skin and no hint of green? Also..... is he

eating raw apples? You mentioned <<apples with cashew butter>> .....

so it sounded more like they were probably raw. If so.... it might be

too hard for him to digest raw apples right now, especially if they

aren't peeled .....but I'm sure you've thought of that already... so

don't mind me. Just trying to cover ever base I can think of.

>

> You don't mention any yogurt (nut or goat), so I'm assuming you're

not using that. In that case, is he getting an acidophilus

supplement? And is it just acidophilus ONLY, or with other bacterial

strains in a probiotic? If he's not getting any " good guys " down

there to replace the bad, you could have a yeast overgrowth situation

that's just keeping him from progressing further..... so acidphilus

supps are really important. Can you tell us what his other

supplements are, too? Just curious.... I know you've made sure

they're all legal but maybe something will jump out.

>

> Is his juice begin diluted still? What kind of juice? Apple, grape,

orange? What brand? Just wondering. I hope I'm not throwing too much

at you.... I know you're already frustrated and overwhelmed, so I

don't mean to be nit-picking but I just want you to be successful.

There's no use putting out all this effort if there's something in

the mix that is undermining your efforts.

>

> Hang in there..... I hope we can help you and kinda hold you up

at the same time. I can understand how tempting it must be to just

let it go. I did a long haul.... 2 & 1/2 years..... with Katera on

a MUCH stricter special diet which really wasn't working well (for

seizure control) throughout the final year. I had to weigh every

speck of food she ate and plan every meal on a computer program,

making sure she never got a bite of ANYthing off limits. By the end

of that time, I was beyond out of my mind...... about to jump off a

cliff. It was soooo stressfull and the entire responsibility was on

me.... then we went right to SCD so I've done one diet or the other

for the past four years solid. (Picture me pulling all my hair out!)

Anyway, I can truly relate to how burned out one can get and how

difficult it is to go through one more day of it, when things aren't

working. (((((((((((((((((((()))))))))))))))))))))

>

> Patti, mom to Katera, SCD 16 months

>

>

> husband wants to take Ds off SCD. what to

do?

>

>

> My husband is not convinced this diet is helping Jack, and thinks

we

> should let him have a " more varied diet. " We've been doing it

for

> about 4 months now, and his stools are worse than when we

started.

> But his speech has improved dramatically, and he's more

interactive

> with us. He was great behavior-wise for about 2 months this past

> summer. Then at the end of August he started having tantrums

again,

> hitting when he doesn't get his way -- all stuff that had

> disappeared. We were never able to successfully do the intro

diet.

> Jack wouldnt eat the food and I wasn't willing to starve him. We

> jumped right in. Now he practically lives on cashew muffins,

> bananas, bacon (soaked in water to remove the sugar) apples with

> cashew butter, juice. Sometimes he'll have cheese or pizza on

nut

> butter pancakes. I make him chicken and steak that he will

sometimes

> eat, but now he is testing us on everything and doesn't want to

eat

> what we want him to, won't try new things. I just discovered the

> saccharin sweetener I give him occasionally has dextrose in it,

so

> that could be a problem, but why are his stools like brownie mix

at

> best when they were better formed BEFORE we started SCD and he

was

> eating lots of complex sugars? I really just want to cry. I

can't

> account for his behavior and no one else wants to continue this

> diet. My husband thinks any gains Jack has made have come from

time,

> or Jack just developing on his own, not the diet or supplements

we're

> giving him. What do you think I should do?

> mom to Jack ASD almost 4, 4 months on SCD

>

>

>

>

>

[Guest guest]

Dear ,

I think you hit on a lot of things that maybe a little iffy for him

(slightly green bananas, bacon, cashews, etc.). Even if you can't go

to the intro diet completely, you might want to experiment with

removing one food at a time to see if it makes a difference. Also, my

son (almost 5 yo, now 1 yr SCD), would not eat any cooked fruit so I

would cook them and then freeze them so they weren't mushy or cook

them and throw them into the blender with ice and make a slush. I am

not surprised at all that you are seeing a flare up. Many of my

friends have seen flares at certain times. We had our worst one at 7

mos and many others had terrible flares at 9 mos SCD. We think that

some of the more stubborn gut bugs have come out and now are dying.

However, after each flare, we always see wonderful gains. I would try

to stick it out and see if you can figure out if some of the foods

are not working for him. The only way I can think of is by

experimenting one food at a time. My son has hugely benefitted from

SCD (we now do goat yogurt too) but we've had our ups and downs. He

is now in a small kindergarten class and is being mainstreamed into

the regular class. Try to stay with it, it's worth it!

Please feel free to e mail me privately if you wish.

Best wishes,

> > ,

> > I hope you'll reconsider giving up just yet. As I read your post,

> there's a few things that jump out as red flags to me. I understand

> the difficulty of the intro diet...... and maybe that would be

ideal

> to try, but I totally understand why you wouldn't want to, even for

> just one or two days (though that's all you'd need to do). Anyway,

> don't worry too much about that part.

> >

> > Whenever we see progress/gains, along with negative symptoms on

> this diet, we look at that as a good thing for the long run......

it

> usually indicates die-off. Now, why he would STILL have any bad gut

> pathogens hanging on after four months is a puzzle..... unless

there

> were some illegals or too much starch in some form that is helping

> them to hang on for dear life.

> >

> > What jumps out to me is all the cashew butter. I know it may be

the

> only nut he can tolerate..... and it does give a great result in

the

> baked goods, especially those muffins...... but cashews ARE the

> starchiest of the nuts, and Elaine has advised before that they

> should not be used in large quantities for beginners. For some, it

> might not be a big issue...... but for a kid who is still self

> limiting and eating so few other foods, this might factor in. Also,

I

> was just wondering what brand you're using.... or are you making

> your own?

> >

> > Another red flag to me is the bacon..... you said: << bacon

> (soaked in water to remove the sugar)>>. I'm just curious, because

I

> have just never heard of this being done before. How do you know

that

> the soaking removes the sugar? I don't mean to come off like I'm

> challenging you, but I've haven't heard this method being

recommended

> on our list before. Is there no source of sugar free bacon in your

> area? I don't use bacon for Katera, so I've never looked for it.

> >

> > I know you've probably made sure of this but I just thought I'd

> ask..... are your bananas really, really ripe? Well spotted with

> dark brown spots on the skin and no hint of green? Also..... is

he

> eating raw apples? You mentioned <<apples with cashew

butter>> .....

> so it sounded more like they were probably raw. If so.... it might

be

> too hard for him to digest raw apples right now, especially if they

> aren't peeled .....but I'm sure you've thought of that already...

so

> don't mind me. Just trying to cover ever base I can think of.

> >

> > You don't mention any yogurt (nut or goat), so I'm assuming

you're

> not using that. In that case, is he getting an acidophilus

> supplement? And is it just acidophilus ONLY, or with other

bacterial

> strains in a probiotic? If he's not getting any " good guys " down

> there to replace the bad, you could have a yeast overgrowth

situation

> that's just keeping him from progressing further..... so acidphilus

> supps are really important. Can you tell us what his other

> supplements are, too? Just curious.... I know you've made sure

> they're all legal but maybe something will jump out.

> >

> > Is his juice begin diluted still? What kind of juice? Apple,

grape,

> orange? What brand? Just wondering. I hope I'm not throwing too

much

> at you.... I know you're already frustrated and overwhelmed, so I

> don't mean to be nit-picking but I just want you to be successful.

> There's no use putting out all this effort if there's something in

> the mix that is undermining your efforts.

> >

> > Hang in there..... I hope we can help you and kinda hold you up

> at the same time. I can understand how tempting it must be to just

> let it go. I did a long haul.... 2 & 1/2 years..... with Katera

on

> a MUCH stricter special diet which really wasn't working well (for

> seizure control) throughout the final year. I had to weigh every

> speck of food she ate and plan every meal on a computer program,

> making sure she never got a bite of ANYthing off limits. By the end

> of that time, I was beyond out of my mind...... about to jump off a

> cliff. It was soooo stressfull and the entire responsibility was on

> me.... then we went right to SCD so I've done one diet or the other

> for the past four years solid. (Picture me pulling all my hair

out!)

> Anyway, I can truly relate to how burned out one can get and how

> difficult it is to go through one more day of it, when things

aren't

> working. (((((((((((((((((((()))))))))))))))))))))

> >

> > Patti, mom to Katera, SCD 16 months

> >

> >

> > husband wants to take Ds off SCD. what to

> do?

> >

> >

> > My husband is not convinced this diet is helping Jack, and

thinks

> we

> > should let him have a " more varied diet. " We've been doing it

> for

> > about 4 months now, and his stools are worse than when we

> started.

> > But his speech has improved dramatically, and he's more

> interactive

> > with us. He was great behavior-wise for about 2 months this

past

> > summer. Then at the end of August he started having tantrums

> again,

> > hitting when he doesn't get his way -- all stuff that had

> > disappeared. We were never able to successfully do the intro

> diet.

> > Jack wouldnt eat the food and I wasn't willing to starve him.

We

> > jumped right in. Now he practically lives on cashew muffins,

> > bananas, bacon (soaked in water to remove the sugar) apples

with

> > cashew butter, juice. Sometimes he'll have cheese or pizza on

> nut

> > butter pancakes. I make him chicken and steak that he will

> sometimes

> > eat, but now he is testing us on everything and doesn't want to

> eat

> > what we want him to, won't try new things. I just discovered

the

> > saccharin sweetener I give him occasionally has dextrose in it,

> so

> > that could be a problem, but why are his stools like brownie

mix

> at

> > best when they were better formed BEFORE we started SCD and he

> was

> > eating lots of complex sugars? I really just want to cry. I

> can't

> > account for his behavior and no one else wants to continue this

> > diet. My husband thinks any gains Jack has made have come from

> time,

> > or Jack just developing on his own, not the diet or supplements

> we're

> > giving him. What do you think I should do?

> > mom to Jack ASD almost 4, 4 months on SCD

> >

> >

> >

> >

> >

[Guest guest]

,

<<I don't want to give up yet, but my husband does.>>

If he's anything like my husband (bless his heart), he may be seeing YOU in

distress as well as wondering whether this is really helping his son, and just

is trying to fix the situation. Hubbies often just can't bear seeing us trying

so hard and strained to the breaking point. Mine feels guilty that I have so

much more of the burden of Katera's daily care and nearly 100% of the diet work.

<<How do I convince him, especially when the stool is worse, and his behavior

has slid backward?>>

Have him read the suggestions we're making.... what I've written and I know Jody

will probably respond, too. Maybe you'll get some responses from others who will

let you know if they were in a similar situation and what they did to remedy it.

Maybe he'd be willing then to support you through a few more weeks... and if

you'll tweak things just a bit, you may see a light at the end of the tunnel...

enough to keep you going, anyway. Your husband is a great dad... and only wants

to help the situation, I can see that.

<<Is the stool worsening from food that's too hard to

digest, or from bacteria hanging on?>>

I would have to say probably BOTH at this point. Remember also that when

bacteria dies off, it leaves behind tender, new, vulnerable tissue in the gut

lining... so that's another reason everything needs to be as easy to digest as

possible.

<<I know the yeast has flared back up, I can tell from the bumps on his skin,

and red ring around the anus (sorry.)>>

That's OK... " poop talk " and " bottom talk " are fine around here. If you know

yeast is a problem, that may need to be addressed. Do you use any antifungals? I

suppose he wouldn't be likely to try the carrot juice and garlic remedy? What

about grapefruit seed extract? I know you've probably tried some of these

things. I would say you might need to cut back on fruit and honey (not sure

you're using honey?) but.... and this is an IMPORTANT but.... it looks like he

is not eating any vegetables. Is that true? If he's not, you really can't cut

out his only sources of carbs. Will he not eat any veggies at all? Maybe we can

figure out some sneaky ways to get them in.

<<The apples are raw. He won't eat cooked fruit.>>

OK.... well, raw is really not okay at this time, but I understand the quandry

you're in. Can you sneak applesauce, pearsauce, etc. into muffins or pancakes?

Even just a TEEEEEENY bit to start with and work up from there? The same could

be done with cooked butternut squash, etc. I seriously will try to help you

figure out some recipes and make a plan for this.

<<thought I had that conquered when I cooked apples and made fruit

leather, but I guess that's too advanced now too.>>

It kind of is, yes... though I'm not sure which would be worse, raw apples or

leather made from applesauce. Hmmm.... maybe Jody and I could discuss that. With

the leather, you have to remember all the water that has been taken out of the

cooked fruit... and maybe figure out another way to get more liquid into him

right about at the same time he ate it? Not sure... don't go back to that just

yet, let us figure out whether that would be sort of a compromise in Jack's

case, that would be better than cutting out yet another food.... he just eats so

few foods!

<<Sometimes the bananas have brown spots but still some green. I thought as

long as there were spots it was OK.>>

For some SCD-ers, it might be okay for them to be slightly greener than what

other people can tolerate. In Jack's case, with where he's at right now, I would

make SURE to have them REALLY ripe. I would stick with REALLY yellow... and

REALLY spotty. They don't have to be black or anything (although the riper the

better, gut-wise). The SUPER ripe ones can be taken out of the skins, cut into

chunks and frozen on a cookie sheet, then made into smoothies with OJ.... or??

Depending on whether or not he likes cold/frozen things, he might even like

eating just frozen banana on a stick or something. If you do a smoothy

succesfully, you can even start sneaking very small quantities of cooked, pureed

veggies in (I know it sounds weird but go with me on this one:)). Yellow squash

would work best... though some kids think green smoothies are appealing!

<<I got the bacon tip from an atkins website. I can't find sf bacon around here

and he loves it.>>

Hmmmm.... well, I'm just thinking this might not be okay... you know, another

red flag about it is that he LOVES it. At this point, I would be suspect of

almost ANYthing that he just really LOVES and wants to eat a lot of. That makes

me thing the bad gut bugs are getting something out of it.

<<We're using welch's white and purple grape juice, always diluted. And

Tropicana original OJ.>>

That good!

<<I could switch from cashew butter to almoind butter.>>

YES! If he tolerates almonds, then I'd go for it.... making sure there's no

added starches... and hopefully you could find it made from blanched almonds, or

make your own, because the almond skins can be harsh for someone who hasn't

gotten significant gut healing going on yet.

<<If I don't do the intro phases, will his stomach ultimately

heal, but maybe it will just take longer?>>

That's hard to say... it might. I think if I were you, I'd just try to tackle

some of these other little things first, see if you can *trick* him into a wider

range of foods, especially sneaky recipes to get veggies and maybe chicken into

him in bigger quantities. Then you might consider a couple of days of intro...

but don't stress about that right now. I would hate to see you facing that at

the moment, if it would be just too much to take on. It would be ideal... b/c

it really does " clear the decks " , so to speak.

<<We give him the custom probiotics acidophilus from Harry as recommended.>>

You might want to try giving it right before bed... then the little " good guys "

can do their magic thing during the night.

Patti, mom to Katera, SCD 16 months

[Guest guest]

Just wanted to chime in on what we did. Wyatt was really picky as

well. I started out with some cookies, basically the pb brownie

recipe and added chicken and veggies to that. At least I knew he

was getting the good stuff. We progressed to eating chicken and

green beans using ABA therapy, and our " bite for bite " reward

system. He started out with just having the food on the his plate,

to touching it, to touching it to his mouth, touching his tongue,

putting it in his mouth, chewing a bite....etc. And it worked. I

just thought about it, and we haven't had to use that unless it is a

new food that he doesn't want to try! How exciting!! Now we use

the chicken and meatballs as a reward for eating the veggie!!

Good luck. We just had some d, so have been having fun figuring

that out, but seems to be on track now. Looks like he might have a

yeast problem, so working on that.

Hope this helps, and sending lots of encouragement your way!! It is

hard, but so worth it!!

Seems to be anything they want in excess, to the exclusion of other

foods, really aren't that good for them. I used to let Wyatt eat as

many bananas as day as he wanted, now he just can have one. Works

out better for us.

Also, Wyatt really likes the pb/banana pancakes (I make them

waffles), and you can hide so much in that!! Though they look a

little funny when they are green!! hahahaha And that is a good

convenience food!

Take care.

Wyatt, 3 3/4, ASD, SCD since 10.04

, 2, typical, mostly SCD