Re: a question?????

[Guest guest]

Kathleen:

I know that some issues can be " cumulative " ... like some people with dairy

protein intolerance can handle small amounts of dairy, but after awhile it sort

of backs up on them or builds up on them and they become overwhelmed (other

people can't handle a single molecule it seems!). My youngest was terribly dairy

intolerant (couldn't even touch it) and then got better, I thought we were

home free but it has been " accumulating " , and now she's got terrible eczema but

we were not removing dairy entirely, now she's getting sensitive enough she's

gotten a facial rash, but no diarrhea yet. I bet if we eliminate dairy 100%,

after her body has sort of de-tox'd she'd probably handle dairy well for a

short time and then start building up the reactions again.

My (admittedly long-winded) point is, maybe whatever is causing his blisters

is either cyclical or it's a reaction to something he's been away from, but it

will build up again? Just a thought, grasping at straws.

(mom to , age 5-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, born 9/19/02, dairy intolerant)

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Kathleen, the diagnosis of CVID is not usually made on the basis of

symptoms. I can't remember all your details but I'm assuming that the

diagnosis was made on the basis of low IgG numbers and probably either

low IgA or IgM, and also a lack of response to vaccinations. If those

numbers are low, and response to the pneumovax is low, then he is in

danger of infections that could overwhelm his little body. If I

remember right, you've been dealing with a lot of blisters all over his

body -- correct me if I've got the wrong kid! The IVIG is given to

prevent that stuff!

The IVIG should help some of his digestive problems eventually -- but

you don't give IVIG to help digestive problems! You give IVIG to

replace IgG that is either low or not functioning properly (or both).

By giving him IVIG, you are giving him other people's protective

response to germs. I wouldn't place a lot of significance on the

fact that his digestion is better right now -- other than to praise the

Lord for it! Katy would have times when hers was better and worse. I

remember her begging me for a chocolate fudgesickle and my saying " Go

ahead, we've got a doctors appointment this week anyway " -- and it not

doing anything. I thought she would be doubled over in agony!!! Of

course when she tried it again later it reacted nastily -- but

apparently her gut was a little healthier at some times than others. I

don't know what they are using to treat his external blisters -- but if

they are in a better stage -- the internal ones might be better, too,

right now.

Now, there is a slight possibility that his chronic diarrhea was

lowering his IgG to the point that the numbers were low and they may

want to re-check his IgG levels in a few years after he starts looking

healthier.

In His service,

Dale

trowlake wrote:

> my question is does he still

>need the IVIG, if his GI symptoms are improving??? his DX was CVID,

>and immuno was from the IDF... kathleen

>

>

>

[Guest guest]

thanks dale, that is what the issue is I guess.. He has low IGa IGG

IGm and IGe, hardly any response to pneumovax... I just was so

hopeful that maybe things were on the upswing... my pedi said, the

IVIG is needed for this reason, and to thank god he is ok for now,

but quickly reminded me of other times, when food trials went ok for

a few weeks, them BAM back to formula.. the blisters are almost

gone, on the body, and completely gone in the mouth, constipation

and impactions are his other main problem... I just was looking for

a way out of the IVIG, maybe this was a sign things were getting

better... I am sooooooooo nervous about this, he is such a normal

little guy in every sense of the word, except these weird health

problems.. kathleen

>

> > my question is does he still

> >need the IVIG, if his GI symptoms are improving??? his DX was

CVID,

> >and immuno was from the IDF... kathleen

> >

> >

> >

[Guest guest]

Yeh, I definetly can see how things can accumulate.. that completely

makes sense with food trials for a few weeks and then he is usually

sick..... I hope not this time... the blisters unfortunately were

part of the CVID ebstein barr virus... but you brought up a great

point he does have new excema on his chin, mouth...since food.. but

not enough to look terrible.. thanks for input and advice, I will

watch to see what is what... thank you kathleen mom to conan 21

months

> Kathleen:

>

> I know that some issues can be " cumulative " ... like some people

with dairy

> protein intolerance can handle small amounts of dairy, but after

awhile it sort

> of backs up on them or builds up on them and they become

overwhelmed (other

> people can't handle a single molecule it seems!). My youngest was

terribly dairy

> intolerant (couldn't even touch it) and then got better, I thought

we were

> home free but it has been " accumulating " , and now she's got

terrible eczema but

> we were not removing dairy entirely, now she's getting sensitive

enough she's

> gotten a facial rash, but no diarrhea yet. I bet if we eliminate

dairy 100%,

> after her body has sort of de-tox'd she'd probably handle dairy

well for a

> short time and then start building up the reactions again.

>

> My (admittedly long-winded) point is, maybe whatever is causing

his blisters

> is either cyclical or it's a reaction to something he's been away

from, but it

> will build up again? Just a thought, grasping at straws.

>

> (mom to , age 5-1/2, dairy intolerant-related GERD --

currently

> has polysaccharide antibody def, previously had transient IgG,

IgA, t-cell &

> other defs... and also to Kate, born 9/19/02, dairy intolerant)

>

>

>