immune system

[Guest guest]

Immune system: I really have been thinking about this issue, and perhaps

the answer is just waiting for parents to put all the 2+2's together?

Lots of secretions, mucous, allergies, growth problems, some have

reported enzyme deficiencies (did anyone make a note of which ones?

there were 2 that were also common with cystic fibrosis), some have

reported adding pancreatic enzymes helped, cartinine defficiency. I'm

sure many have been tested for cystic fibrosis with negative results.

The common thing is that the excess in mucous and secreations become

a breeding ground for those nasty bugs that never seem to leave. The

second thing is that the ducts of the pancreas could become clogged with

the mucous like if CF, which impaires the body to break down food or

deliver the digestive enzimes? That sets up a process ready for food

intollerances, as larger particles escape through the walls and are

triggered by the body as foreign, setting of a histamine response, and

on and on? The gut overgrowth with yeast bacteria due to all the

antibiotics, also sets off the cycle? Hormones also regulate pancreatic

secretions, (secretin and cholecystokinin help the pancreaas to create

large quantities of fluid which neutralizes stomach acid.) And with

problems related to hormone production, etc. another cycle set off?

Why can't most children with CHARGE handle milk proteins? Maybe the

problem is in the intracellular level, and involves the protein

transport system? Just another caution about testing for " allergy " .

Literature shows that often the skin prick test is unreliable for food

allergies, even the RAST test can be non-conclusive. Have your doctors

check the literature? I know of a case where after 4 years of a clear

chest, while on a very strick dairy-free diet, (then change in doctors,

foster family, etc.) can't make the connection that chest problems now

relate to being back on dairy (the " official " allergy test apparently

gave them the OK) Have most parents concluded its a problem with the

protein structure in the milk not the sugars or lactose? Also, a

caution about the suggestion on mass immunization of the vulnerable

(talking about RSV virus). Remember the cases where the children

reacted to vaccine (ex. the child from Japan), the caution with egg

based vaccine, and in Jeanne's case, LOTS of vaccinations that when

tested for immune responses, had no effect. Lots of loaded

preservatives (you can look up what else) injected to no avail. How

many unreported cases of what we don't know have been reactions? It's

so hard to know, when its like a mystery trying to guess many of the

medical issues. Its also a personal decision to be worth the risk. For

all the new babies, remember the latex allergy has become common in

older children with CHARGE, so check your hostipal's non-latex policy.

Latex is everywhere during medical exposure. Someone else will put this

all together. Jeanne, Caitlyn had no IgE response? (or which was it

again, sorry) This is all just questions and not meant as

professional expos~e.

J McMullen wrote:

> Cathie

>

> Not a lot of CHARGErs have confirmed immune system

> deficiencies, but all of the literature reports that

> they are frequently ill and that common illnesses

> (colds flus) are quite severe in our kids.

>

> The excess secretions in your daughter due to the

> choanal atresia and trach. In absence of a fever, it

> might seem likely. However, in my daughter, the docs

> were hesitant to run the tests, I guess they assumed

> her frequent illnesses were just due to her other

> problems, i.e. asthma etc.

>

> I wonder if 10 yrs from now, if more CHARGErs will be

> identified as being immune deficient.

>

> Jeanne

>

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