Re: : Antibody Deficiency

[Guest guest]

In a message dated 4/10/2006 11:52:25 AM Central Standard Time,

mrlbrinks@... writes:

> Does receive IVIG treatment for the antibody def? If not, what

> treatment does she receive?

>

has never received any treatment of any kind. Just abx for acute

infections. (I KNOW!!!) She was dx'd by " Infectious Diseases and Immunology " and

they seemed more intuned to current acute infection rather than overall quality

of life. I think that might be from the focus on " infectious diseases " . She

survived pneumococcal meningitis at 6 months old (That was a miracle. She was

already in septic shock and coma before making it to the hospital.), that was

what prompted checking into her immune status.

When she was first dx'd at 13 months old, she had multiple, multiple deficits

(see signature line). They wanted to do IVIG. I was scared and in shock and

wanted to research this treatment before I agreed to it. We were told to

isolate her until then. When she turned 2 we were going to recheck everything

and

then start IVIG (they did not think she would improve because she had so many

problems). Well, by then I had joined this group and learned so much and knew

IVIG would help her, if she had all those problems. They rechecked, and her IgG

was up in either the 400s or the low 500s! Great and everything, but her

clinical picture was unchanged! But since her IgG came up, they said she was no

longer a candidate unless she got (and survived!!!!!) ANOTHER deep-seated

infection such as meningitis, sepsis, osteomylitis or encephalitis. They wanted

2

deadly infections before treating (pneumonia did NOT count).

Well, in hindsight, that doesn't do much for quality of life, and what are

your chances of surviving 2 deadly infections, especially without some permanent

damage??????? Plus, it doesn't address the fact that while your IgG #s may

look good, are they functioning?? Because if you aren't making normal

antibodies, all of them aren't.

I spent a few years kicking myself a little for not taking the IVIG option

when given. But really, has done okay. I kept going back and forth

wondering if we should seek a second opinion. But she didn't get anything else

deadly, so we sort of held our own. I mean, she has been sick A LOT, and it has

been

heartbreaking a lot of the time. But then summer would come and she'd be 100%

well the entire summer, and I'd put the idea on the back burner. And as far

as we know she has no permanent damage, and this school year has been

wayyyyyyyyyyyyyyyyy healthier than we've ever seen before.

So in hindsight, was it the right decision? As with so many decisions in life

the answer has to be: Maybe. She's sure doing pretty great right now.

(mom to , age 7, dairy intolerant-related GERD is resolving!!! --

currently has polysaccharide antibody def, previously had transient IgG, IgA,

t-cell & other defs... and also to Kate, age 3!, more dairy intolerant but

very healthy!)

[Guest guest]

After hearing that made it without the IVIG, I feel like there

is some hope here then for Cole.

I imagine that if I go tommorow and the numbers look better than

they did in the fall, the immuno will not opt for IVIG. My DH will

be happy. He doesn't want to have to do IVIG for Cole. However, I

will not be thrilled. Don't get me wrong, it's not that I WANT to

put Cole through IVIG. It's just that the clinical picture over

here is a mess. Cole has not really been well since last November.

He's had some sort of ear infection and/or sinus infections and then

there are the gut and genital issues on top of it. I just want to

see my baby healthy and fully able to enjoy his life.

Thanks for your insight and willingness to share about !

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def,

GERD, possible Celiac)

>

> In a message dated 4/10/2006 11:52:25 AM Central Standard Time,

> mrlbrinks@... writes:

>

>

> > Does receive IVIG treatment for the antibody def? If not,

what

> > treatment does she receive?

> >

>

> has never received any treatment of any kind. Just abx for

acute

> infections. (I KNOW!!!) She was dx'd by " Infectious Diseases and

Immunology " and

> they seemed more intuned to current acute infection rather than

overall quality

> of life. I think that might be from the focus on " infectious

diseases " . She

> survived pneumococcal meningitis at 6 months old (That was a

miracle. She was

> already in septic shock and coma before making it to the

hospital.), that was

> what prompted checking into her immune status.

>

> When she was first dx'd at 13 months old, she had multiple,

multiple deficits

> (see signature line). They wanted to do IVIG. I was scared and in

shock and

> wanted to research this treatment before I agreed to it. We were

told to

> isolate her until then. When she turned 2 we were going to recheck

everything and

> then start IVIG (they did not think she would improve because she

had so many

> problems). Well, by then I had joined this group and learned so

much and knew

> IVIG would help her, if she had all those problems. They

rechecked, and her IgG

> was up in either the 400s or the low 500s! Great and everything,

but her

> clinical picture was unchanged! But since her IgG came up, they

said she was no

> longer a candidate unless she got (and survived!!!!!) ANOTHER deep-

seated

> infection such as meningitis, sepsis, osteomylitis or

encephalitis. They wanted 2

> deadly infections before treating (pneumonia did NOT count).

>

> Well, in hindsight, that doesn't do much for quality of life, and

what are

> your chances of surviving 2 deadly infections, especially without

some permanent

> damage??????? Plus, it doesn't address the fact that while your

IgG #s may

> look good, are they functioning?? Because if you aren't making

normal

> antibodies, all of them aren't.

>

> I spent a few years kicking myself a little for not taking the

IVIG option

> when given. But really, has done okay. I kept going back and

forth

> wondering if we should seek a second opinion. But she didn't get

anything else

> deadly, so we sort of held our own. I mean, she has been sick A

LOT, and it has been

> heartbreaking a lot of the time. But then summer would come and

she'd be 100%

> well the entire summer, and I'd put the idea on the back burner.

And as far

> as we know she has no permanent damage, and this school year has

been

> wayyyyyyyyyyyyyyyyy healthier than we've ever seen before.

>

> So in hindsight, was it the right decision? As with so many

decisions in life

> the answer has to be: Maybe. She's sure doing pretty great

right now.

>

> (mom to , age 7, dairy intolerant-related GERD is

resolving!!! --

> currently has polysaccharide antibody def, previously had

transient IgG, IgA,

> t-cell & other defs... and also to Kate, age 3!, more dairy

intolerant but

> very healthy!)

>

>

>