Re: Off topic - Desperate and need help on SCD. Considering giving up.

[Guest guest]

Hi Stan - I'm just curious about your concern about butter nut

squash on the intro diet. Squash is low oxalates. Am I

missing/overlooking something?

Many thanks,

Martha

> >

> > Hi,

> >

> > My daughter has been on SCD since Nov 26. We started with the

Intro

> > Diet. At the beginning, she was very gassy, stimming increased a

lot,

> > her tummy got more bloated, tantrum increased a lot and she was

always

> > hungry.

> >

> > Her current food list includes: eggs, carrots, chicken, pear

sauce,

> > pear juice, butternut squash, zucchini.

> > Her supplements include: B6 (Supernutera), cod liver oil (Child

> > Life), Vitamin C (Whole foods), calcium (Kirkman), probiotics

> > (kirkman), MB12 shots.

> > Other medication includes: Singulair granules.

> >

> > After a month, her gassiness has gone down some. She doesn't

fart much

> > now although she still burps quite a bit. Her tantrum has also

gone

> > down slightly but is still very high.

> >

> > However, her self stimming, the size of her belly, her defiance

and

> > her hunger is still very bad. She was a really sweet girl and

was

> > improving well BEFORE SCD. With her self stimming so high, she's

much

> > more autistic on SCD then she ever was!

> >

> > Does anyone know how long it takes stimming or size of belly or

> > tantrum to go down? Even her therapist was disappointed and

commented

> > that this diet is messing things up.

> >

> > We are very disappointed and depressed and seriously considering

> > giving up. She was doing so well before! We are seeing lots of

bad

> > things with this diet and NOT A SINGLE GOOD THING. Will it ever

get

> > better?

> >

> > Would appreciate ANY advices and feedback from those who have

gone

> > through this.

> >

> > Thank you in advance.

> >

> >

> >

>

[Guest guest]

Martha,

How do you prepare it?

- Stan

> > >

> > > Hi,

> > >

> > > My daughter has been on SCD since Nov 26. We started with the

> Intro

> > > Diet. At the beginning, she was very gassy, stimming increased a

> lot,

> > > her tummy got more bloated, tantrum increased a lot and she was

> always

> > > hungry.

> > >

> > > Her current food list includes: eggs, carrots, chicken, pear

> sauce,

> > > pear juice, butternut squash, zucchini.

> > > Her supplements include: B6 (Supernutera), cod liver oil (Child

> > > Life), Vitamin C (Whole foods), calcium (Kirkman), probiotics

> > > (kirkman), MB12 shots.

> > > Other medication includes: Singulair granules.

> > >

> > > After a month, her gassiness has gone down some. She doesn't

> fart much

> > > now although she still burps quite a bit. Her tantrum has also

> gone

> > > down slightly but is still very high.

> > >

> > > However, her self stimming, the size of her belly, her defiance

> and

> > > her hunger is still very bad. She was a really sweet girl and

> was

> > > improving well BEFORE SCD. With her self stimming so high, she's

> much

> > > more autistic on SCD then she ever was!

> > >

> > > Does anyone know how long it takes stimming or size of belly or

> > > tantrum to go down? Even her therapist was disappointed and

> commented

> > > that this diet is messing things up.

> > >

> > > We are very disappointed and depressed and seriously considering

> > > giving up. She was doing so well before! We are seeing lots of

> bad

> > > things with this diet and NOT A SINGLE GOOD THING. Will it ever

> get

> > > better?

> > >

> > > Would appreciate ANY advices and feedback from those who have

> gone

> > > through this.

> > >

> > > Thank you in advance.

> > >

> > >

> > >

> >

>

[Guest guest]

Stan,

Thank you so much for your reply.

Today, we haved just mailed out the urine and stool for the OAT test

and stool analysis test. Not sure when we'll receive the result.

Since my child has been GFCF since Sep and SCD (while still on GFCF)

since Nov 26, will the IgG test be informative? My daughter's current

diet is extremely restrictive. Do I have to expose her to more food

before doing IgG test?

I have read about diet that avoid colored vegetables such as carrots.

Do you think carrot could be a problem since carrot is still

appearing in her poop?

I cook the butternut squash in a little water, then mash it up. Just

like making applesauce. Why do you suspect a problem with that? Is it

to starchy?

We have not tried any anti-yeast or antifungal treatment. Is there

something we could try before getting the result back? Her regression

is very heart breaking to watch.

My child has received her MMR. How do you think the scope at

thoughtful house will help? Even if it does show that the gut is

inflammed?

In another post, you mentioned that one should see positive result

within a week. It has been 5 weeks since on SCD and it seems to be

getting worse. May be SCD is just not suitable for her?

Could you suggest some food that is relatively safe? I read about

caveman diet. Do you go through an Intro phase? Or do you just

introduce any allowed food? What do you offer as breakfast while on

caveman diet? Currently, I give her eggs for breakfast. If I were to

remove eggs, I don't know what to offer for breakfast since I have

yet to introduce nuts.

Thanks, but I don't need a vacation. I need some answers. Keeping

energy up is much easier if I know the direction I'm going is the

right one. Thanks for helping. Really appreciate it.

=========================================================

Below is the description of my daughter's condition:

1. She has been slow in development from birth. Missed all

milestones. On reviewing our video clips, we noticed some lost in

play skills and increase in stimming at around age 2, but no obvious

regression. It is a gradual process.

2. She has received all vaccinations up to about age 2.

3. Symptoms?

4. Her tongue is not white. Rather healthy looking red.

5. Face is not red. Smooth and no eczema. She has pretty good

complexion and rarely has rash. Except once at 22 month old, she had

hives for quite a while. We changed laundry soap to a colorless,

odorless one and it went away. She currently has some rash on her

back. Red, with bits of white at the tip. Like pimples. Not sure why.

6. Verbal stims; she will say things out of context. Visual stims;

she looks at her fingers held very close to her eyes. Others: she

play with her fingers and foot. Recently, she drops her lower jaw

slightly and put her tongue over her lower teeth.

7. Don't konw her viral levels

8. Our Dan! doctore ordered OAT test, comprehensive stool analysis,

blood elements test,fecal metal test and heavy metal hair test.

> >

> > Hi,

> >

> > My daughter has been on SCD since Nov 26. We started with the

Intro

> > Diet. At the beginning, she was very gassy, stimming increased a

lot,

> > her tummy got more bloated, tantrum increased a lot and she was

always

> > hungry.

> >

> > Her current food list includes: eggs, carrots, chicken, pear

sauce,

> > pear juice, butternut squash, zucchini.

> > Her supplements include: B6 (Supernutera), cod liver oil (Child

> > Life), Vitamin C (Whole foods), calcium (Kirkman), probiotics

> > (kirkman), MB12 shots.

> > Other medication includes: Singulair granules.

> >

> > After a month, her gassiness has gone down some. She doesn't fart

much

> > now although she still burps quite a bit. Her tantrum has also

gone

> > down slightly but is still very high.

> >

> > However, her self stimming, the size of her belly, her defiance

and

> > her hunger is still very bad. She was a really sweet girl and was

> > improving well BEFORE SCD. With her self stimming so high, she's

much

> > more autistic on SCD then she ever was!

> >

> > Does anyone know how long it takes stimming or size of belly or

> > tantrum to go down? Even her therapist was disappointed and

commented

> > that this diet is messing things up.

> >

> > We are very disappointed and depressed and seriously considering

> > giving up. She was doing so well before! We are seeing lots of

bad

> > things with this diet and NOT A SINGLE GOOD THING. Will it ever

get

> > better?

> >

> > Would appreciate ANY advices and feedback from those who have gone

> > through this.

> >

> > Thank you in advance.

> >

> >

> >

>

[Guest guest]

Stan,

Spinach gave my girl lots of gas when I introduced it just after SCD

Intro. Not sure if I have the courage to try it right now.

Will definitely look at Houston enzymes. Thanks for the suggestion.

Is the walnut milk from Whole Foods SCD legal? I'm so paranoid right

now I'm making from scratch everything that goes into my daughter's

mouth.

Do you happen to know of a source for nuts? I know there are online

stores, but I was wondering if there are stores where I could just go

pick up some nuts or nut flour without having to buy a ton. So that I

could try it to see if my daughter with tolerate it. On the nuts from

Whole Foods, I saw a disclaimer that said it has been processed in

facility that process wheat, milk and other stuff. Do you have

recipes for using nuts that are eggs and milk free? My daughter

doesn't eat hard or crunchy things so it'll be hard to give it to her

as is.

The following is my girl's diet. Everyday. In it's entirety.

1. Eggs - for breakfast

2. Soup made with chicken, carrot, celery (not eaten) - for lunch and

dinner

3. Home made pear sauce

4. Home squeezed pear juice

On some days, I'll add the following:

5. Zucchini - peeled and boiled into the soup

6. Butternut squash - cooked in a little water and mashed, like

applesauce.

I have taken out carrots since yesterday and have taken out eggs

starting today. Replaced carrots with zucchini.

Her diet is too limited and is the same EVERYDAY. I don't know how to

vary it since many foods I introduced since Intro have given her gas.

Which included spinach, banana and green beans. I even took out

apples just to see if it was giving her problem.

> > > > > >

> > > > > > Hi,

> > > > > >

> > > > > > My daughter has been on SCD since Nov 26. We started with

the

> > > > Intro

> > > > > > Diet. At the beginning, she was very gassy, stimming

> > increased a

> > > > lot,

> > > > > > her tummy got more bloated, tantrum increased a lot and

she

> > was

> > > > always

> > > > > > hungry.

> > > > > >

> > > > > > Her current food list includes: eggs, carrots, chicken,

pear

> > > > sauce,

> > > > > > pear juice, butternut squash, zucchini.

> > > > > > Her supplements include: B6 (Supernutera), cod liver oil

> > (Child

> > > > > > Life), Vitamin C (Whole foods), calcium (Kirkman),

probiotics

> > > > > > (kirkman), MB12 shots.

> > > > > > Other medication includes: Singulair granules.

> > > > > >

> > > > > > After a month, her gassiness has gone down some. She

doesn't

> > fart

> > > > much

> > > > > > now although she still burps quite a bit. Her tantrum has

> > also

> > > > gone

> > > > > > down slightly but is still very high.

> > > > > >

> > > > > > However, her self stimming, the size of her belly, her

> > defiance

> > > > and

> > > > > > her hunger is still very bad. She was a really sweet girl

and

> > was

> > > > > > improving well BEFORE SCD. With her self stimming so

high,

> > she's

> > > > much

> > > > > > more autistic on SCD then she ever was!

> > > > > >

> > > > > > Does anyone know how long it takes stimming or size of

belly

> > or

> > > > > > tantrum to go down? Even her therapist was disappointed

and

> > > > commented

> > > > > > that this diet is messing things up.

> > > > > >

> > > > > > We are very disappointed and depressed and seriously

> > considering

> > > > > > giving up. She was doing so well before! We are seeing

lots

> > of

> > > > bad

> > > > > > things with this diet and NOT A SINGLE GOOD THING. Will

it

> > ever

> > > > get

> > > > > > better?

> > > > > >

> > > > > > Would appreciate ANY advices and feedback from those who

have

> > gone

> > > > > > through this.

> > > > > >

> > > > > > Thank you in advance.

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I need to read the label on the Walnut milk to make sure. If a food causes gas,

then I

would be careful with it... although juicing it might make a difference since

the juice is

easier to break down. I've seen several posts about nut flour and were to by it

in the

pecanbread group. We have some very bright SCD folks in the group who may chime

in. I

can't remember where you buy it.

As far as the diet... what's left looks low risk to me. Between the changes and

some

enzymes I would suspect you'll see some improvements.

I think the key is getting down to a set of foods that will stablize the gut and

then worry

about variety thereafter. That's what I would do.

- Stan

> > > > > > >

> > > > > > > Hi,

> > > > > > >

> > > > > > > My daughter has been on SCD since Nov 26. We started with

> the

> > > > > Intro

> > > > > > > Diet. At the beginning, she was very gassy, stimming

> > > increased a

> > > > > lot,

> > > > > > > her tummy got more bloated, tantrum increased a lot and

> she

> > > was

> > > > > always

> > > > > > > hungry.

> > > > > > >

> > > > > > > Her current food list includes: eggs, carrots, chicken,

> pear

> > > > > sauce,

> > > > > > > pear juice, butternut squash, zucchini.

> > > > > > > Her supplements include: B6 (Supernutera), cod liver oil

> > > (Child

> > > > > > > Life), Vitamin C (Whole foods), calcium (Kirkman),

> probiotics

> > > > > > > (kirkman), MB12 shots.

> > > > > > > Other medication includes: Singulair granules.

> > > > > > >

> > > > > > > After a month, her gassiness has gone down some. She

> doesn't

> > > fart

> > > > > much

> > > > > > > now although she still burps quite a bit. Her tantrum has

> > > also

> > > > > gone

> > > > > > > down slightly but is still very high.

> > > > > > >

> > > > > > > However, her self stimming, the size of her belly, her

> > > defiance

> > > > > and

> > > > > > > her hunger is still very bad. She was a really sweet girl

> and

> > > was

> > > > > > > improving well BEFORE SCD. With her self stimming so

> high,

> > > she's

> > > > > much

> > > > > > > more autistic on SCD then she ever was!

> > > > > > >

> > > > > > > Does anyone know how long it takes stimming or size of

> belly

> > > or

> > > > > > > tantrum to go down? Even her therapist was disappointed

> and

> > > > > commented

> > > > > > > that this diet is messing things up.

> > > > > > >

> > > > > > > We are very disappointed and depressed and seriously

> > > considering

> > > > > > > giving up. She was doing so well before! We are seeing

> lots

> > > of

> > > > > bad

> > > > > > > things with this diet and NOT A SINGLE GOOD THING. Will

> it

> > > ever

> > > > > get

> > > > > > > better?

> > > > > > >

> > > > > > > Would appreciate ANY advices and feedback from those who

> have

> > > gone

> > > > > > > through this.

> > > > > > >

> > > > > > > Thank you in advance.

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Also, consider an MB12 trial. That may help a great deal with digestion.

- Stan