Re: Food absorbtion problem

[Guest guest]

have they tried other formuals then if they think its that they shyuld have

they done any tests to see if soemthings im tere

>

> Danny has daily episodes in which he screams and bites his hand. He is

> nonverbal and cannot tell us what is wrong. We suspect that many of these

> episodes may be related to gastrointestinal problems since they often follow

> a feeding.

>

> Danny has a g-tube and gets all his nutrition from PediaSure, which is

> lactose free. His doctor thinks he may be having a problem absorbing

> something in the formula.

>

> Can anybody shed any light on what kind of " absorption problem " we should

> be looking for?

>

> -Mike Schwartz in Ventura, Calif.

>

>

[Guest guest]

Hi Mike,

My daughter (5yo with CHaRGE) did the same thing, she was

also on pediasure and she had a fundoplication at 8 months old for

reflux, she was tube fed till 3yo and would often go " psycho " after

a feed, I think that it was a combination of reflux, large volume of

feed and air. I would do gravity feeds slowly and spend time

venting her tube for a while after her feeds. I would also give her

Milanta (antacid) before a feed to coat her oesophagus. She is

still on maximum dosage of Losec for reflux. She is very verbal

now, but still does not EVER verbalise pain, she just won't

complain, instead she shouts, bites her clothes and simply turns

into the poltergeist, she went through a stage of breath holding and

passing out from pain but she doesn't cry about it. At least now I

can now understand her " psycho " behaviour, it still takes a long

time to work out where the pain is coming from though.

Good luck.

in Australia

>

> Danny has daily episodes in which he screams and bites his hand.

He is nonverbal and cannot tell us what is wrong. We suspect that

many of these episodes may be related to gastrointestinal problems

since they often follow a feeding.

>

> Danny has a g-tube and gets all his nutrition from PediaSure,

which is lactose free. His doctor thinks he may be having a problem

absorbing something in the formula.

>

> Can anybody shed any light on what kind of " absorption problem "

we should be looking for?

>

> -Mike Schwartz in Ventura, Calif.

>

>

>

[Guest guest]

,

I believe many children with CHARGE have, as yet, serious and undiagnosed

digestive problems. Our daughter had so many problems with breast milk that she

bled internally and had intractible diarrhea and pain. The only thing that

could be tolerated was Pregestimil formula which is 'predigested' and only

requires the person to process the amino acids which are the building blocks of

life. Kendra was completely intolerant of Pediasure or any typical formula or

soy formulas.

Thankfully, dietary interventions are among the most beneficial of the

interventions we have tried.

Among approaches that we have tried have been 'gluten and casein free diet', and

the 'specific carbohydrate diet'.

Kendra had a postive response to the specific carbohydrate diet in that she

became calmer and more focused. She follows modified version of that diet

presently.

The theories behind the diet stem from the fact that certain carbohydrates,

including wheat, rice, etc., may contribute to extreme distress. The story

" Breaking the Vicious Cycle " chronicles Elaine Gottschalk's valiant success in

helping her young child overcome dietary disfunction and illness. It is a very

important book to read, in my opinion, to add to the body of knowledge about

possible signs of and treatments of complex food processing problems.

One factor that used to affect Kendra was constipation. That condition was

greatly improved by adding mercury-free fish or cod liver oil to her diet.

There is a lot of interesting research, some from Harvard, about the benefits of

Omega 3 fatty acids dietarily and also how lack of them can cause learning,

behavior and even psychiatric difficulties, including depression. 'The Omega 3

Connection' is a good resource book on this topic.

Since very little, if any, research on CHARGE and dietary problems/issues

exists, we have felt it extremely necessary to 'go outside the box' and read and

research possible approaches that could help. Kendra is virtually over the

constipation and seems to be doing very well following the current food

protocols we have adapted for her. We try to give her mostly organic foods, she

eats very little sugar and no artificial sugar, (except in gum sometimes), she

does not drink the tap water where we live, and her carboydrates are carefully

considered.

Additionally she takes Methyl B12 and zinc, both of which she is deficient in.

She also takes certain kinds of probiotics.

Many of the above food meals were incorporated into her g-tube when she had one.

I am familiar with many doctors in the southern california area who are

interested in and treat these kinds of dietary issues. You live in a geographic

area full of such specialists. :-)

Mom to Kendra, and Camille

Food absorbtion problem

>

>Danny has daily episodes in which he screams and bites his hand. He is

nonverbal and cannot tell us what is wrong. We suspect that many of these

episodes may be related to gastrointestinal problems since they often follow a

feeding.

>

> Danny has a g-tube and gets all his nutrition from PediaSure, which is

lactose free. His doctor thinks he may be having a problem absorbing something

in the formula.

>

> Can anybody shed any light on what kind of " absorption problem " we should be

looking for?

>

> -Mike Schwartz in Ventura, Calif.

[Guest guest]

Have you tried milk free products? He may have a mild protein

sensitivity which both my kids had. They were both on predigested

formula that had the milk proteins already broken down for them.

Doctors have told me that if they truly had a milk protein allergy

that they would have had worse symptoms, but when I switched them,

they both made a huge improvement. Good luck,

B. Mom to Zachary 5 years and Carmen 2 years (CHARGE)

>

> Danny has daily episodes in which he screams and bites his hand.

He is nonverbal and cannot tell us what is wrong. We suspect that

many of these episodes may be related to gastrointestinal problems

since they often follow a feeding.

>

> Danny has a g-tube and gets all his nutrition from PediaSure,

which is lactose free. His doctor thinks he may be having a problem

absorbing something in the formula.

>

> Can anybody shed any light on what kind of " absorption problem "

we should be looking for?

>

> -Mike Schwartz in Ventura, Calif.

>

>

>