Re: Progress Stagnated & Need Support

[Guest guest]

Maybe try to get him away from so many carrots. I thought I heard these

can feed yeast somewhere before. Maybe the culprit is in so many

carrots.

>>> stauro@... 10/5/2004 1:55:50 AM >>>

hi all!!

my husband and i are scratching our heads, and don't know where to

go from here. jake has been on SCD for 2 months(started 8-5-04 to be

exact), and currently, all we have is an exhausted little boy, and

regression in terms of behaviors.

we are starting to get concerned. up to this point, i have had to

fight my husband every step of the way to keep jake on this diet,

but now i am starting to have doubts.

we modified jake's diet to make sure he was getting a balanced diet,

and he seemed to pick-up in energy. however, we have seen that gain

slip away. when we started SCD, we saw a tremendous increase in

yeast, and he was placed on ketoconazole. by the end of his

treatment, it seemed as though he was on nothing, and his skin got

even worse(eczema/pimples on upper arms & thighs). we requested that

his doctor place him on nystatin, as we couldn't stand to watch his

yeast take him over again. he currently takes 2 tsp/day.

also, at the beginning of the diet, we had had about 3-4 trophies.

everything else was the same old mush/cow-pattie. we still have

grainy/sandy diapers, and i believe the culprit may be his pearsauce

(anyone else experience something similar?). his diapers have become

yeasty & frothy. perhaps we are seeing die-off? we have moved him

into stage 2 foods to increase variety, but we don't have good

diapers yet. we are at a loss. i know he is eating the healthiest

that he ever has, but he is eating such a limited variety of foods,

and is eating so many carrots that his feet are turning orange.

today he saw a new OT for the first time, and she requested to

observe jake in his diaper only to look for muscle tone, etc... she

immediately started questioning whether we were seeing a

nutritionist, whether jake is underweight, and also asked if we have

had a lower-GI performed on him. i felt like such a bad mom after

our meeting. she never said anything to imply that i was a bad

mother, but i felt horrible since i know that this is something that

i knew we probably need to look into. i was just hoping that the

diet, supplements, and anti-fungals would have fixed it. it breaks

my heart to see his belly distended, and rib-cage exposed from his

chest to his back. after the visit with the OT, i just don't feel

like i can continue doing the same things we have been doing as they

don't really seem to be benefitting him(or perhaps it just **feels**

that way).

at this point, should we abandon the stages in order to further

increase his foods? can i give him cooked-mangos(pureed into a

sauce) on stage 2? i still feel as though SCD is a good diet for

jake, but i am not sure of the best way to implement for him.

if anyone has a suggestion(s), i would really appreciate it?

shannon.

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the

following websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

,

I can only reply from a fairly inexperienced

perspective (about two months as well). My son is four

years old ASD and I am on the diet as well because of

GI problems (I'm a rather dilapidated 28! As for

the sandy stools... we see them all the time. I don't

think it's food because we've eliminated everything

that looks like that at various times. I believe it's

someting else, maybe it's all the crud that's been

stuck for so long. Anyway, it doesn't " hurt " either of

us as far as we can tell.

Also my son has been going up and down on weight. He

is really remarkably skinny, has kind of transluscent

skin. He gained at first on SCD but stopped again,

then gained, then stopped.. It seems like he does

really well for a week or so at a time and then will

get tired and need a rest. I feel the same way.

Healing takes energy. He has varying stools and fairly

regressive behaviours in these little valleys too.

From what I'm hearing from everyone else, that's

pretty standard.

I hope this encourages you een a little. I know this

is right too, even if it looks all wrong right now.

Stay strong!

sarah

--- stauro@... wrote:

> hi all!!

>

> my husband and i are scratching our heads, and don't

> know where to

> go from here. jake has been on SCD for 2

> months(started 8-5-04 to be

> exact), and currently, all we have is an exhausted

> little boy, and

> regression in terms of behaviors.

>

> we are starting to get concerned. up to this point,

> i have had to

> fight my husband every step of the way to keep jake

> on this diet,

> but now i am starting to have doubts.

>

> we modified jake's diet to make sure he was getting

> a balanced diet,

> and he seemed to pick-up in energy. however, we have

> seen that gain

> slip away. when we started SCD, we saw a tremendous

> increase in

> yeast, and he was placed on ketoconazole. by the end

> of his

> treatment, it seemed as though he was on nothing,

> and his skin got

> even worse(eczema/pimples on upper arms & thighs).

> we requested that

> his doctor place him on nystatin, as we couldn't

> stand to watch his

> yeast take him over again. he currently takes 2

> tsp/day.

>

> also, at the beginning of the diet, we had had about

> 3-4 trophies.

> everything else was the same old mush/cow-pattie. we

> still have

> grainy/sandy diapers, and i believe the culprit may

> be his pearsauce

> (anyone else experience something similar?). his

> diapers have become

> yeasty & frothy. perhaps we are seeing die-off? we

> have moved him

> into stage 2 foods to increase variety, but we don't

> have good

> diapers yet. we are at a loss. i know he is eating

> the healthiest

> that he ever has, but he is eating such a limited

> variety of foods,

> and is eating so many carrots that his feet are

> turning orange.

> today he saw a new OT for the first time, and she

> requested to

> observe jake in his diaper only to look for muscle

> tone, etc... she

> immediately started questioning whether we were

> seeing a

> nutritionist, whether jake is underweight, and also

> asked if we have

> had a lower-GI performed on him. i felt like such a

> bad mom after

> our meeting. she never said anything to imply that i

> was a bad

> mother, but i felt horrible since i know that this

> is something that

> i knew we probably need to look into. i was just

> hoping that the

> diet, supplements, and anti-fungals would have fixed

> it. it breaks

> my heart to see his belly distended, and rib-cage

> exposed from his

> chest to his back. after the visit with the OT, i

> just don't feel

> like i can continue doing the same things we have

> been doing as they

> don't really seem to be benefitting him(or perhaps

> it just **feels**

> that way).

>

> at this point, should we abandon the stages in order

> to further

> increase his foods? can i give him

> cooked-mangos(pureed into a

> sauce) on stage 2? i still feel as though SCD is a

> good diet for

> jake, but i am not sure of the best way to implement

> for him.

>

> if anyone has a suggestion(s), i would really

> appreciate it?

>

> shannon.

>

>

__________________________________________________

[Guest guest]

,

I'll do my best to give you some suggestions...... but, first of all, I'd just

like to say something about the comments the OT made to you..... I think she

may be well-meaning but she is NOT a doctor or a nutritionist herself so try not

to take her words to heart. Don't take any of it personally..... just " file it

away " under " comments from nosy outsiders " . Obviously, your son has some issues

right now and that needs to be resolved ..... so I can understand her being

concerned and since you already ARE concerned about how things are going, I know

how those little comments can cut to the core and weigh heavy on your heart.

Just accept my virtual " hug " .... ((((((((((((((((((()))))))))))))) .....

you are NOT a bad Mommy! Hang in there! Now, on to some brainstorming.....

You said:

<<we modified jake's diet to make sure he was getting a balanced diet,

and he seemed to pick-up in energy. however, we have seen that gain

slip away.>>

Just a question here.... do you mean that you modified his diet BEFORE starting

SCD? Or after? Recently? Modified in what way? Just unclear on exactly what you

meant... so that might help me to know better what to suggest.

<<when we started SCD, we saw a tremendous increase in

yeast,>>

This CAN happen..... especially if not supplementing with acidophilus or not

using SCD yogurt. Our " statement " on SCD and yeast can be found in the " files "

section at the homepage for this e-mail list. (Link at the bottom of this

message, if you're not already reading messages at the website.) Some parents

have had to cut back on fruit and honey until yeast is under control.... but

you'll need to make sure you have some other good sources of carbs... squash,

green beans, etc.

<<and he was placed on ketoconazole. by the end of his

treatment, it seemed as though he was on nothing, and his skin got

even worse(eczema/pimples on upper arms & thighs). we requested that

his doctor place him on nystatin, as we couldn't stand to watch his

yeast take him over again. he currently takes 2 tsp/day.>>

One thing we have seen with *some* of the kids is that the prescription

antifungals can make the yeast come back STRONG just as soon as the Rx is

stopped. You may want to be prepared for this.... and look into some other

natural antifungals... carrot juice/garlic... recipe in files section at the

site .... grapefruit seed extract, etc. Is he getting any acidophilus?

<<also, at the beginning of the diet, we had had about 3-4 trophies.

everything else was the same old mush/cow-pattie. we still have

grainy/sandy diapers, and i believe the culprit may be his pearsauce

(anyone else experience something similar?). his diapers have become

yeasty & frothy. perhaps we are seeing die-off?>>

The " grainy/sandy " may not be pearsauce at all.... I've read way back on this

list, many months ago, something about the graininess being possibly " bile

salts " . Maybe someone else can comment. I may be remembering this totally wrong

but I have a vague memory of this being connected to liver function?? I don't

think it's anything to panic about but may just be that his body is detoxing a

lot and this goes hand in hand with that? Please don't quote me on that.... I

hope someone else will comment further. Anyway, you are definitely not the first

to see the sandy, sticky poops. Oh, and yes... you could be seeing die-off that

is either related to the Nystatin presently, the diet, or both.

<<we have moved him into stage 2 foods to increase variety, but we don't have

good diapers yet. we are at a loss.>>

I know you have a dilemma over not wanting his diet so limited.... but do be

cautious as you advance on to harder to digest foods. The really fibrous foods

are just too much if you have a gut full of yeast that is dying off. The yeast

may have rampantly taken over once bacterial colonies died off... but now as the

yeast dies off, you've got to be aware that the gut lining will be very TENDER

with brand new tissue being exposed where they were attached in colonies so

everything passing through needs to be EASY to digest! Well-cooked, peeled,

pureed if he doesn't chew well.... whatever you have to do. Maybe use nut

butters instead of nut flour right now. You didn't say whether or not you're

using nut flour. I don't see anything wrong with the cooked, pureed mangoes,

myself.... except that they probably have quite a bit of natural sugars (??) and

might be an issue until the yeast is down.

<<but he is eating such a limited variety of foods,

and is eating so many carrots that his feet are turning orange.>>

Keep in mind that you are only two months into SCD. Of course, you don't want

his diet to be extremely limited for too long.... but fairly limited for right

now is really OK. The problem is, if the gut wall is really damaged and in bad

shape, there is no reasoning for giving lots of harder to digest foods when his

gut can't even take in the nutrients yet. If he is too skinny right now... it

will be hard for him to gain weight if he can't absorb nutrients correctly and

digest his proteins, fats and carbs to make them usable. You might consider

adding avacado (healthy fats and carbs) and maybe more nut butters to get some

good calories into your skinny boy.

I wish I could show you photos of my middle son (all grown up now, age 21... and

neurotypical) when he was a preschooler. He was the SKINNIEST little thing, with

ribs showing and spindly limbs. This was LONG before I knew anything about SCD,

but we had a good naturopath who had me start him on good acidophilus, carrot

juice and daily doses of cod liver oil (to deal with recurrent ear infections

and after-effects of antibiotics) and he quickly transformed into a strapping,

healthy young boy with energy to spare. No more ear infections and he filled out

nicely.

The fact that you are seeing the orange coloring on Jake's feet (Hands, too?

Face...around the nose?) is just from the beta-carotene, yes... but I have read

that people with really healthy, intact guts (not leaky) can eat lots of carrots

and not see this so much. With leaky gut, you will see that orange staining

develop more quickly. I don't believe it's harmful but it's an interesting

indicator, if what I read is true.

I don't know about the " carrots feed yeast " theory. In fact, fresh, raw carrot

juice actually has natural anti-fungal properties (as well as being

anti-parasitic, etc.)... so again, go read up on the carrot juice and garlic

yeast remedy. Tamaro (long time SCD mom with two boys on the diet for

two years now) says this is the BEST yeast remedy she has ever used. Her recipe

is in the files section. Getting your child to actually DRINK it may be an issue

if raw garlic is too strong a taste for him..... I had to use a medicine syringe

to get any of it into Katera. One 5cc dropperful at a time... one bite of

applesauce in between each dropper!

<<i was just hoping that the diet, supplements, and anti-fungals would have

fixed it.>>

Two months time is not enough time to " fix it " ... this gut healing thing takes

TIME and PATIENCE. Hang in there!

<<after the visit with the OT, i just don't feel

like i can continue doing the same things we have been doing as they

don't really seem to be benefitting him(or perhaps it just **feels**

that way).>>

Yes.... you hit the nail on the head! It does **feel** that way to you right

now. It's a lot of work... and you have so much love and concern for your

precious boy. You are probably stressed to the limit. I know how much you want

to see things turn around... and I believe they can. I do think you got caught

in the " yeast monster's " clutches ... as the yeast opportunistically took over

the available space in his gut as soon as it was able to. You did not say

whether or not you are supplementing him with acidophilus....nut yogurt or

capsules (Kirkman has an SCD legal milk-free one now)... that is just CRUCIAL

right now! You've got to repopulate his gut with the " good guys " ! Forgive me if

you've already covered this base... but it can't hurt to reiterate. Also...

I honestly do not know whether prescription antifungals will kill off

acidophilus... but I think you have to give them separately.

((((((((((((((((((())))))))))))))))) Seems I'm giving lots of cyber hugs

today.

Patti, mom to Katera, SCD 16 months

[Guest guest]

Hi Patti and ,

> <<also, at the beginning of the diet, we had had about 3-4

trophies.

> everything else was the same old mush/cow-pattie. we still have

> grainy/sandy diapers, and i believe the culprit may be his

pearsauce

> (anyone else experience something similar?). his diapers have

become

> yeasty & frothy. perhaps we are seeing die-off?>>

>

> The " grainy/sandy " may not be pearsauce at all.... I've read way

back on this list, many months ago, something about the graininess

being possibly " bile salts " . Maybe someone else can comment. I may

be remembering this totally wrong but I have a vague memory of this

being connected to liver function??

That's right about the grainy/sandy stools. Here's some comments

from our old list

" From Elaine:

I've been doing this for so many years my mind is rattling. But I

believe

that someone had the " sand " analyzed and it had to do with bile

salts. Is

there a lab in your vicinity (ask your doctor) to see if you can get

them

analyzed. "

and

" I've also read somewhere that someone else had the " sand " analyzed

and it was from the yeast. Mit has the same problem. Sticky stools

full of grainy bits. No nut flours used at present.

He had some of this before the diet, but it has increased. I can

only assume it is a good thing happening in his gut and will right

itself eventually.

Hang in there.

Peg P "

Some epsom salts baths and yogurt or probiotics may help .

Sheila

[Guest guest]

diane, sarah, patti & sheila,

thanks so much for the info. and {{HUGS}}. you can never give enough

of these. ;-)

> Just a question here.... do you mean that you modified his diet

BEFORE starting SCD? Or after? Recently? Modified in what way? Just

unclear on exactly what you meant... so that might help me to know

better what to suggest.

we made the change about a week ago(so we were almost 2 months into

it). we modified his diet to include avocado & cashew butter to

increase his fats, and balanced the amount of protein(chicken &

turkey) with his carbs(half a banana/pears/carrots/green beans). we

were really high on protein, and relatively low on carbs(which was

unintentional), plus jake was so lethargic(we were literally had to

scrape him up off the floor), my husband threatened pulling the plug

on the diet.

> <<when we started SCD, we saw a tremendous increase in

> yeast,>>

> This CAN happen..... especially if not supplementing with

acidophilus or not using SCD yogurt. Our " statement " on SCD and

yeast can be found in the " files " section at the homepage for this e-

mail list. (Link at the bottom of this message, if you're not

already reading messages at the website.) Some parents have had to

cut back on fruit and honey until yeast is under control.... but

you'll need to make sure you have some other good sources of

carbs... squash, green beans, etc.

currently, jake gets no honey, or nut flours. we try to puree

everything he eats(except banana). we use the custom probiotics(i

tend to give him a little more since we are in a die-off phase).

however, yogurt production has stopped. i really don't like my

yogurt maker(keeping temperature regulated is really hard), but i

hope to start it up again tomorrow.

> One thing we have seen with *some* of the kids is that the

prescription antifungals can make the yeast come back STRONG just as

soon as the Rx is stopped. You may want to be prepared for this....

and look into some other natural antifungals... carrot

juice/garlic... recipe in files section at the site .... grapefruit

seed extract, etc. Is he getting any acidophilus?

we haven't tried any natural remedies(they all seem high in

phenols/benzoates, or he is allergic to them). we may just breakdown

and do it, as i am not comfortable with giving him drugs for an

extended period of time.

> I know you have a dilemma over not wanting his diet so limited....

but do be cautious as you advance on to harder to digest foods. The

really fibrous foods are just too much if you have a gut full of

yeast that is dying off. The yeast may have rampantly taken over

once bacterial colonies died off... but now as the yeast dies off,

you've got to be aware that the gut lining will be very TENDER with

brand new tissue being exposed where they were attached in colonies

so everything passing through needs to be EASY to digest! Well-

cooked, peeled, pureed if he doesn't chew well.... whatever you have

to do. Maybe use nut butters instead of nut flour right now. You

didn't say whether or not you're using nut flour. I don't see

anything wrong with the cooked, pureed mangoes, myself.... except

that they probably have quite a bit of natural sugars (??) and might

be an issue until the yeast is down.

how can one be sure that the yeast is no longer an issue? we have

been working on yeast since april, and it only seems to be getting

worse(our son was 4+ on all levels). we haven't re-tested since

then, but the desginated anti-fungal didn't seem to have much of an

effect.

> The fact that you are seeing the orange coloring on Jake's feet

(Hands, too? Face...around the nose?) is just from the beta-

carotene, yes... but I have read that people with really healthy,

intact guts (not leaky) can eat lots of carrots and not see this so

much. With leaky gut, you will see that orange staining develop more

quickly. I don't believe it's harmful but it's an interesting

indicator, if what I read is true.

this is SUPER interesting. i'll take a look into this.

> I don't know about the " carrots feed yeast " theory. In fact,

fresh, raw carrot juice actually has natural anti-fungal properties

(as well as being anti-parasitic, etc.)... so again, go read up on

the carrot juice and garlic yeast remedy. Tamaro (long

time SCD mom with two boys on the diet for two years now) says this

is the BEST yeast remedy she has ever used. Her recipe is in the

files section. Getting your child to actually DRINK it may be an

issue if raw garlic is too strong a taste for him..... I had to use

a medicine syringe to get any of it into Katera. One 5cc dropperful

at a time... one bite of applesauce in between each dropper!

i just may try this regardless of sensitivities/allergies. i want

this yeast out of here so we can fix our boy!! ;-)

thanks again so much!!

shannon.