need to replace ketchup

October 31, 2010

Well, it worries *me* that I can see his ribs, all of them. And that he's so

tired all the time. He is allowed to lie down/take breaks in his 45-minute

karate class, otherwise he wouldn't be able to get through it. No one else does

this, or needs to.

The school did their testing on him, he's highly gifted but at 7 he can't read a

chapter book because he won't use a ruler and gets lost on the page. He can

read comic books (his brother has some) because each bubble has only a few lines

of text. They said he tested at 5th-grade math level but at homework time, he

can't tell a '17' from a '71'. He still reverses p, g, b, d and q and sometimes

s, as well as pretty much all his number digits. But the vision therapist and

educational consultant both say he's not dyslexic. But he has dysgraphia and

hates writing. So homework time is a joy, let me tell you. He's in the

resource room all day working far below grade level and is happy. In kindy, he

reacted to grade-level work by coming home and saying " I'm stupid. I can't do

this work " . Broke me heart, he was so down on himself.

Do I care that he's not working to his supposed potential? Not really. But I'm

very mystified as to how he scored so high when his real-life level of

functioning is not that high.

Mostly it's the tiredness I worry about. And how frail he seems. His first

grade teacher recommended thyroid testing, he's fine. Sleep study was perfect.

His ADHD is bad but he has tics so no stimulants.

Dunno about Strattera and gf/CF.

Sent from my iPhone

On Oct 30, 2010, at 3:20 PM, " agirlnamedsuess21 "

wrote:

> , You missed the point. My almost 4 year-old does not have Down syndrome

either. They (the doctors, etc...) are comparing *his* growth to *their*

" typical " kid's growth chart. Well, I guess we are far from typical because my

son does not match up to *their* chart.

> OTOH, my son, who unlike yours has MDS, is only a few pounds more than yours

and is typical on *the designated chart they ahve for him*.

> So, the rhetorical question was " Who are you comparing your son to? " Your son

*is* typical, as this is *his* growth pattern.

> OTOH, *you* as a *mom* are *worried* about *his* growth. (Again, the

rhetorical question is " Why? " ) Is it because he does not match up to the charts

the doctor has for your child? Is it because the doctors are worried? Or is it

because he is a picky eater or does not eat hardly anything?

> The bottom line was you were worrying yourself to death and spending a lot of

time worrying in stead of trying to come up with a different solution. (Nicely,

I assume your answer would be " I have tried EVERYTHING. " Maybe...maybe not.

> I was simply offering other things that I know do work in hopes of helping you

help your child, which in turn would help you not be worried.

> Many people do not like diet change....many people, as a known fact in

psychology (my aunt has a degree in that field and works in that field) do not

like change period. Not sure why? I know change is hard for me or used to be for

many things.

>

> > > > > > > > > > > >

> > > > > > > > > > > > Hailey has to have Heinz ketchup on everything. I would

take it away but do not

> > > > > > > > > > > > know what she will put on there stir fry, due to rice

being dry. Fried potatoes,

> > > > > > > > > > > > mashed potatoes, meat. All to dry. She has a very mild

tomato allergy. I

> > > > > > > > > > > > really want to take this away for a few weeks to see if

any of this hyper type

> > > > > > > > > > > > behavior stops. Any suggestions on a sauce or something

that does not have

> > > > > > > > > > > > gluten or casein in it? Keeping in mind spices send her

up the wall. Which

> > > > > > > > > > > > again is another reason I want her off the ketchup.

> > > > > > > > > > > >

November 1, 2010

Are you speaking of pyroles? Doctor here had me do this test, reading that DS

usually test positive. Hailey was elavated and gave her the zinc and B6

treatment. Nothing worked, B vitamins give her too much energy. It was a mail

order test. Anyone else?

________________________________

To:

Sent: Sat, October 30, 2010 11:50:15 AM

Subject: RE: Re: need to replace ketchup

Dear Beth....

Wes had issues with h pylori and we were recommended by a DAN (Defeat Autism

Now) an alternative to the heavy antibiotics since antibiotics are especially

bad for children with the DS autism diagnosis

and actually are accused of being key players in the difficulties our children

face.

anyway the alternative worked and he tested negative after the treatment....I

cannot remember off hand what the supplement was but if you want me to dig

through his records to find it I will do it...I have to run out now for several

ours though. I fyou are not interested no biggie....Oh Monolaurin was one of

the antibacterial and tiviral antifungal supplements I gave him...you can order

it online....not a prescription...I was actually giving it to my son on a daiiy

basis for awhile after that...

there are more things but can't remember offhand.....Annie mom to Wesley age 10

To:

From: dehoff5@...

Date: Sat, 30 Oct 2010 00:59:49 -0400

Subject: Re: Re: need to replace ketchup

He has had endoscopies and has recurrent h pylori infections, which leads

to/contributes to malabsorption. We investigated it because he eats and is tube

fed thru night and still gains weight VERY slowly if at all. His BMs are usually

soft and frequent but also sometimes impacts.

Beth

Sent from my iPhone

>

> Beth!!

> My son Wesley is 44 pounds and age 10 and wears size 5 or 6....

> he has been given the diagnosis failure to thrive althugh he is full of energy

>and robust....wondering how you came to the malabsorption conclusion....

> Wes does absorb fats based on his BMsies...they are not white and do not

>float...

> Annie

>

> 8:04 -0700

> Subject: Re: Re: need to replace ketchup

>

> My son will be 11 in Dec. and he wears size 5 clothes and weighs 44 pounds. He

>

> has issues with malabsorption and failure to thrive.

>

> Beth

>

> __

>

> >

>

November 1, 2010

No........ h pylori..... if tested positive needs to be treated.....and is done

usually with strong antibiotics (my husband tested positive and he took the

antibiotic course) but we did not want that for Wes as he has had so many

antibiotics in his little life and we are trying to stay away from them

AMAP.....in Wesley the h pylori caused a great amount of reflux which put a

wrench in his already difficult feeding issues...it also made my husband very

sick...apparently some people can have it with no symptoms...

It is not treated by B12 B6 or zinc all of which we give Wesley and have for

years....

we used monolaurin.....and matula tea (which some say is a scam but every time i

get a stomach virus and drink the tea it is amazing how quickly it takes away

the nausea) and something else but I cannot remember what...have to dig for

notes.

I am not familiar with Pyrroles....but it is not the same thing or at lest I

never heard of it put that way or treated that way...

From Mayo clinic: H. pylori infection occurs when a bacterium called

Helicobacter pylori (H. pylori) infects your stomach or the first part of your

small intestine.H. pylori infection is thought to be present in about half the

people in the world. For many people, H. pylori infection causes no signs or

symptoms and doesn't lead to any complications. But for others, H. pylori can

lead to serious complications, such as ulcers and stomach cancer.In the United

States, H. pylori infection rates are declining. In turn, the rates of serious

complications are also declining.Symptoms

To:

From: karenmcdowell26@...

Date: Mon, 1 Nov 2010 04:20:48 -0700

Subject: Re: Re: need to replace ketchup

Are you speaking of pyroles? Doctor here had me do this test, reading

that DS

usually test positive. Hailey was elavated and gave her the zinc and B6

treatment. Nothing worked, B vitamins give her too much energy. It was a mail

order test. Anyone else?

________________________________

To:

Sent: Sat, October 30, 2010 11:50:15 AM

Subject: RE: Re: need to replace ketchup

Dear Beth....

Wes had issues with h pylori and we were recommended by a DAN (Defeat Autism

Now) an alternative to the heavy antibiotics since antibiotics are especially

bad for children with the DS autism diagnosis

and actually are accused of being key players in the difficulties our children

face.

anyway the alternative worked and he tested negative after the treatment....I

cannot remember off hand what the supplement was but if you want me to dig

through his records to find it I will do it...I have to run out now for several

ours though. I fyou are not interested no biggie....Oh Monolaurin was one of

the antibacterial and tiviral antifungal supplements I gave him...you can order

it online....not a prescription...I was actually giving it to my son on a daiiy

basis for awhile after that...

there are more things but can't remember offhand.....Annie mom to Wesley age 10

To:

From: dehoff5@...

Date: Sat, 30 Oct 2010 00:59:49 -0400

Subject: Re: Re: need to replace ketchup

He has had endoscopies and has recurrent h pylori infections, which leads

to/contributes to malabsorption. We investigated it because he eats and is tube

fed thru night and still gains weight VERY slowly if at all. His BMs are usually

soft and frequent but also sometimes impacts.

Beth

Sent from my iPhone

>

> Beth!!

> My son Wesley is 44 pounds and age 10 and wears size 5 or 6....

> he has been given the diagnosis failure to thrive althugh he is full of energy

>and robust....wondering how you came to the malabsorption conclusion....

> Wes does absorb fats based on his BMsies...they are not white and do not

>float...

> Annie

>

> 8:04 -0700

> Subject: Re: Re: need to replace ketchup

>

> My son will be 11 in Dec. and he wears size 5 clothes and weighs 44 pounds. He

>

> has issues with malabsorption and failure to thrive.

>

> Beth

>

> __

>

> >

>

November 1, 2010

I'm interested in anything you gave for h pylori; are you saying it was

monolaurin and matula tea? Or something else? Thanks Anne.

Beth

________________________________

To:

Sent: Mon, November 1, 2010 8:27:56 AM