Re: Decision to get off diet, please help!!!

[Guest guest]

In a message dated 1/14/04 9:13:46 AM Eastern Standard Time,

maria_mcgugan@... writes:

> I feel that the diet

> is making more focused and alert so he was able to learn new

> things, etc and get better everyday. Last night, eventhough he is

> sick, he was watching tv with us, just cuddling with his daddy or

> me... that was something we never had before because he is quite

> distant.

>

:

Just my .02, but I think that what you wrote right there is a fabulous reason

to stick to it for a while, at least. I completely agree with you about diet

supporting the whole package of interventions and therapies you are doing.

That is exactly the way I feel about it (some people have success doing only

diet, but that isn't the case for us). I don't agree with the doctor's opinon

that

eating differently than his peers will cause socialization

difficulties. I think (and this is just my opinion) that his being connected

with you

and his father goes much much further in helping him toward appropriate

socialization. Removing whatever it is that keeps him distant is of huge

importance.

Just like we are told with babies, the first and most important relationship

for children is with their parents. If they trust and feel connected to you,

they build the confidence it takes to tackle the world of socialization with

peers.

Just my humble opinion. Go with your gut and we will all be there as a

support for you!

A

Max 4.4 (pddnos--scd 5m)

Mia 2.8 (nt)

[Guest guest]

>

> We really need your advice. After a year of being off milk, he is

> still non-verbal, meaning not consistent in talking, but had shown

> that he can talk on occasions.

>

Hi ,

at first I thought I'd write: go on, get back to the standard

American diet. See what happens. Let you & your doctor find out.

But I have second thoughts. You will have big trouble, your son will

be regressing in a major way, he will have a giant setback. Is it

worth it?

It's ONLY been three months. What do you expect? Three months! SCD

was never meant to be an instant solution to anything.

Have you considered an ABA/SLP for speech?

Marjan

Netherlands

[Guest guest]

Did you ever consider that maybe his tests look so " good " because he

has been on the SCD?

I don't know if you know this or not, but celiac blood tests will

always come back negative if you have been on a gluten free diet.

So that result is expected. It does not mean that your son does not

have celiac disease.

By putting you back on gluten and re-running the test, your doctor

would be able to determine if the gluten antibodies are present in his

blood. Then he would just tell you to go on a gf diet. (All the

while a lot of damage would be happening to his GI tract.)

Just remember that just because " the other kids eat it " doesn't make

it healthy. Just because the other kids eat cookies every day at

school doesn't make cookies (overprocessed flour, sugar, hydrogenated

oil, etc) healthy. Why doesn't the school try to implement a more

healthy snack for the kids. It certainly wouldn't hurt them to serve

bananas or grapes for snacks. Instead of giving up on the diet, why

don't you see if the school won't serve a healthy snack to all of the

kids?

Snuggles on the couch with a previously distant child sound just

marvelous to me.

Jody

mom to -5.1 and -7.4

[Guest guest]

,

Your doctor reminds me of my EX-husband who recently told me he

thought Danelle's improvement was simply the result of time and

natural maturation. YEAH, RIGHT! (Why was she plateaud for

months/years with very little improvement, with lots of time?)

She's improved because of the changes in her diet, etc. She has

been SCD for about 3 months and her bowel movements are improving

from mush to more firm, working on yeast. Eye contact,

comprehension, behavior and socialization have ALL improved during

the diet. Yesterday she even showed empathy/sympathy for the first

time ever!!!!! -- I hurt my hand a the grocery store and said ouch,

ouch, ouch and she came over and looked at it, smiled sweetly at me

and patted me. Like some of the other posts, she is calm, snuggles,

(her step-dad was lying down on couch and she sat right next to his

head and was gently patting his hair and watching TV -- not taking

all of the magazines off the coffee table and shredding them or

getting into stuff...) watches TV and LAUGHS out loud at the Stooges

and other silly stuff-- she rarely laughed out loud before, even

though she's always been a happy, easygoing kid. She initiated good

night kisses and hugs, too! These things have been a long time in

coming -- she's 9 years old. Even though the poops aren't always

firm, I know I'm on the right tract/track. )

With best wishes,

Blush

mom to Danelle -9 yrs ASD/non-verbal (for now) )

[Guest guest]

Hello... thanks for the answer and you know what i know these are

all coming, i,e, the replies because in my gut i know we are on the

right track.

we are in ontario, and hopefully my son will get his ABA from govt

this year. He is getting speech everyweek and ot every 2 weeks. i

also get a worker who focuses on sensory/pre-school activities 2-3

hours a week, and also he is in pre-school full time 3 times a week.

of course, we do our own sensory diet as much as we can but the

focused intervention at home is the SCD diet.

Thank you all...

> >

> > We really need your advice. After a year of being off milk, he

is

> > still non-verbal, meaning not consistent in talking, but had

shown

> > that he can talk on occasions.

> >

>

>

> Hi ,

>

> at first I thought I'd write: go on, get back to the standard

> American diet. See what happens. Let you & your doctor find out.

> But I have second thoughts. You will have big trouble, your son

will

> be regressing in a major way, he will have a giant setback. Is it

> worth it?

> It's ONLY been three months. What do you expect? Three months! SCD

> was never meant to be an instant solution to anything.

> Have you considered an ABA/SLP for speech?

>

> Marjan

> Netherlands

[Guest guest]

The fact that his bowels are normal should be reason enough to keep

him on the diet. Is his doctor blind to this?

As for all intervention as a whole treating a child, I agree. I like

to look at the combined benefit of diets and therapy like this: If I

were to re-enroll in college and take classes I would probably learn

alot. If however, I had a constant headache, what I learn would be

limited. The pain would reduce my attention span as would the

sleepiness due to tossing and turning during the night. Some

teachers are fun or interesting so it is a bit easier for me to pay

attention yet it will never be what it should. If I took more

classes the amount I am able to learn would increase but still be

hindered by those darn headaches (and probably increase my

agitation). If my headaches stopped but I did not go to school, I

would not learn. This can be applied to our kids. We can increase

the number of therapy sessions or get the best therapist available

but the amount they can learn is inhibited by the pain they may feel

from GI problems or by " brain fog " . On the flip side, we cannot rely

on stopping the physical problems alone to help them learn because

they need to be taught. It all goes hand in hand.

I hope this made sense.

> > ,

> > You mention that his bowel movements have been normal since late

> October.

> > Does that correlate with when you started SCD for ? Do you

> have an

> > intuitive feeling about what would be best for your child?

> Although our daughter is

> > not in the autism spectrum, her GI doctors also feel that diet

> changes are not

> > essential and yet, we see such a GI improvement on SCD. For me,

> the doctors

> > are one of many resources to use as we make decisions for our

> children. The

> > final decision has to come from our own judgment. I understand

> that our

> > experiences may not be at all helpful for someone who is on SCD

> for developmental

> > reasons.

> >

> > , Mom to non ASD, IBD daughter, age 8, whole family SCD 7

> weeks, no

> > Imodium for 5 weeks, Nortryptaline & Imitrex (migraines) other

> daughters ages 11

> > and 4

> >

> >

> >

> >

[Guest guest]

Hello all:

FIrst of all... thanks so much for all your replies. I had an

opportunity to briefly talk to Elaine yesterday. My husband and I

decided to have stay on SCD diet since we realize that it is

really helping him out in all aspect of his development. It is just

so sad and a dilemma for parents like us to hear doctors say this

and they insist that what we are doing does not have much study

done, etc - enough to really make you upset and confused.

I will update you with 's improvement. Actually he is now

learning to open more cupboards, fridge when he is thirsty (he

always asked us for drinks) and starting to help himself.

THanks again and God bless you all.

> > > ,

> > > You mention that his bowel movements have been normal since

late

> > October.

> > > Does that correlate with when you started SCD for ? Do

you

> > have an

> > > intuitive feeling about what would be best for your child?

> > Although our daughter is

> > > not in the autism spectrum, her GI doctors also feel that diet

> > changes are not

> > > essential and yet, we see such a GI improvement on SCD. For

me,

> > the doctors

> > > are one of many resources to use as we make decisions for our

> > children. The

> > > final decision has to come from our own judgment. I understand

> > that our

> > > experiences may not be at all helpful for someone who is on

SCD

> > for developmental

> > > reasons.

> > >

> > > , Mom to non ASD, IBD daughter, age 8, whole family SCD 7

> > weeks, no

> > > Imodium for 5 weeks, Nortryptaline & Imitrex (migraines) other

> > daughters ages 11

> > > and 4

> > >

> > >

> > >

> > >