Re: So, what do you think?

[Guest guest]

Hope you ladies don't mind me jumping in here but I am so tired of this

treatment everywhere and for everyone. I think that a lot of people in

the health care profession have forgotten about compassion.

I wonder what it would take...of if it would even be legal, to start a

National forum that people could go to and either Post a message about a

good / bad experience at a Doctor's office. Other people could look up

perspective Doctors by reading other peoples opinions on the treatment they

received. This may give the doctors a clue that we would like better

treatment not only from them but from the office staff and if we can't get

it we will go elsewhere ... and we'll tell others of our treatment too.

Maybe I'm just blowing steam here but this kind of treatment is

unacceptable.

Mom to Journey Igg sub class deficient

> Re: I told her my job WAS to monitor my dd's care and that a

> > mistake over her IgA levels could cause an anaphylactic shock reaction

and

> kill my dd. And that I was trying to prevent this by addressing this IgA

> > level issue. Imagine this: my pediatrician was on the phone to me in

TWO

> minutes! It's scary, but I wonder what kind of care my dd would receive

if

> I wasn't > monitoring her bloodwork and treatment closely.

> >

> > Pam

> > wife to (16 years)

> > mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

>

> > That is scary! And why is it that the office staff in doctor's offices

> are so cold and hard? It's not just yours; my doctor's office, the

> pediatrician's office, my Gastorenterologist. The only nice one is 's

> Immunologist! And do they think that we're going to let them keep our

kids

> from getting the proper care? It's unbelievable!

>

>

>

>

[Guest guest]

Hi Sharon,

We saw an infectious disease specialist in January of this year who said

exactly that -- recent studies have shown that the majority of IgA deficient

patients who are symptomatic(lots of respiratory infections) benefitted from

IVIG.

--Martha (mom to Chrissy IgA deficiency etc.)

[Guest guest]

Re: I told her my job WAS to monitor my dd's care and that a

> mistake over her IgA levels could cause an anaphylactic shock reaction and

kill my dd. And that I was trying to prevent this by addressing this IgA

> level issue. Imagine this: my pediatrician was on the phone to me in TWO

minutes! It's scary, but I wonder what kind of care my dd would receive if

I wasn't > monitoring her bloodwork and treatment closely.

>

> Pam

> wife to (16 years)

> mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

> That is scary! And why is it that the office staff in doctor's offices

are so cold and hard? It's not just yours; my doctor's office, the

pediatrician's office, my Gastorenterologist. The only nice one is 's

Immunologist! And do they think that we're going to let them keep our kids

from getting the proper care? It's unbelievable!

[Guest guest]

Pam - Macey has also had an increase in her IgA since restarting IVIG about 18

months ago. No one can explain it but

it's in the normal limits now. Supposedly her Gamimmune is a low IgA product so

I'm not sure if it could be coming from

there.

Ursula Holleman

mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease,

GERD, Diabetes Insipidus, colonic

inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

O.K This may sound like a stupid question, but wouldn't this suggest that IgA

deficient patients would benefit from IVIG???? Does anyone know if studies have

been done to disprove this theory?? Just curious and still trying to learn.

Sharon

s mom

Re: So, what do you think?

Pam - Macey has also had an increase in her IgA since restarting IVIG about 18

months ago. No one can explain it but

it's in the normal limits now. Supposedly her Gamimmune is a low IgA product so

I'm not sure if it could be coming from

there.

Ursula Holleman

mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease,

GERD, Diabetes Insipidus, colonic

inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Our thought is that the increase in IgG helped trigger the function to produce

IgA. But that's a parents thought.

Ursula

[Guest guest]

Rebekah is on gammaguard which is essentially IgA-free. My first thought

was that we were just seeing the IgA from the gammaguard, but moving from

zero to 60 and then dropping to 31 doesn't make a lot of sense!

Pam

wife to (16 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Re: So, what do you think?

Pam - Macey has also had an increase in her IgA since restarting IVIG about

18 months ago. No one can explain it but

it's in the normal limits now. Supposedly her Gamimmune is a low IgA

product so I'm not sure if it could be coming from

there.

Ursula Holleman

mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus

disease, GERD, Diabetes Insipidus, colonic

inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

About the IgA. I'd be curious to know if any IgA increase was in the blood

only, which wouldn't help IgA def patients. I'd love to know if there was in

increase in Secretory (salivary) IgA, which would show that the IgA was

present in the places (mucous membranes) where it is needed.

Also, had zero IgA (even tested secretory) when she was one yr old, but

had a close-to-normal level at three years of age. Got big raised eyebrows

from the immuno on that one but I just smiled and quietly thanked God. Guess

we'll know for sure when we re-test this month.

(mom to Kate, born 9/19/02; and , age 4 -- currently has

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

other defs)

[Guest guest]

Hi Martha, this is Karin, mother of IgA deficient, can you tell

me more about this? Always has a respiratory infections. Or it

always turns into one. I didn't think IVIG could help.

Thanks.

Karin

> Hi Sharon,

> We saw an infectious disease specialist in January of this year

who said

> exactly that -- recent studies have shown that the majority of IgA

deficient

> patients who are symptomatic(lots of respiratory infections)

benefitted from

> IVIG.

>

> --Martha (mom to Chrissy IgA deficiency etc.)

>

>

>

[Guest guest]

Hi Karin,

I haven't asked the doc for copies of the studies but we inferred from the

conversation that he thinks that our daughter may have selective antibody

deficiency as well as IgA deficiency so that he recommended that we try IVIG.

(Not so great responses to those pneumoccocal titers) But his statement

that many IgA deficient patients do well on IVIG therapy has also been said

by one of the ENT docs that we saw too. So I guess that IgA deficiency can

be a marker for something wrong in IgG production (quantity) or how well the

IgG actually functions(quality). Additionally, the tests that they do can't

always determine if there is a subset of a IgG subclass that is missing or

not working properly so that is why they may see so many IgA deficient

patients seeming to do better on IVIG. This is a complete turnaround from

statements we heard in the past (when everyone though that prophylactic

antibiotics were the appropriate treatment). Now we know that studies

suggest that for immune deficiency and frequent respiratory infections, that

only works for a period of time due to the large number of different types of

bacteria in the nasal and sinus cavities.

So to put it bluntly there seems to be alot of change going on how IgA

deficiency may be treated in the future or these studies that they are

referring to may not be substantiated by further research. Perhaps your

immunologist has an opinion on the matter.

--Martha

[Guest guest]

Hi

I don't write much b/c I'm worried about another health problem with another

kid of mine (?able metabolic disorder) and my immune deficient child is doing

fairly well and I am also doing well, but when I read this, I had to put in

my 2 cents worth given that I was originally diagnosed with 'IgA deficiency'

and now have an 'IgA deficiency and polysaccharide antibody deficiency ' (I

don't have a good response to the pneumococcal vaccine). Anyway, I've been on

IVIG for about 3 years. 2 of which have been subcutaneous. Anyway, it has

changed my life - I still get sinus infections about 6x a year but I can take

antibiotics and then stop taking them after 2-3 weeks! Prior to gamma, I was

on antibiotics almost continuosusly for 10 years! And I am no longer either

sick or living in fear that I will get sick very soon. It's scary but I've

almost gotten so that I don't worry very much about getting sick (I feel like

I should knock on wood when I say this!). So, anyhow, whatever gamma is doing

- it's doing a good thing for me!

Thanks,

Anne (IgA deficiency, polysaccharide antibody deficiency) (mother to Sam -

IgA deficient)