Re: IgG replacment therapy

[Guest guest]

Gartland wrote:

>I am wondering if anyone has info about IgG

>replacement therapy. Aly has her first case of

>pneumonia this winter-already. Her ped is recommending

>we get a second opinion regarding her " immune issues " .

>Since the dr we are seeing took her off the

>prophylactic antibiotics and didn't take the time to

>see her when she was ill her ped feels like the immune

>dr isn't really taking this seriously enough. I tend

>to agree.

> Her ped told me the dr he is recommending is great

>and has started some of his other IgG deficient kids

>on therapy. Those kids are doing GREAT! I would LOVE

>to have someone consider Aly's issues worthy of more

>than a glance. Someone other than her ped anyway.

>

> I am also curious if a person can have low IgG and

>low subclasses(1 and 3) but have normal antibodies AND

>still have constant infections???? Could she still be

>considered for therapy?

>

> Thanks, Cheryl mom to 13 and Alyson 10

>heart defects, asthma

>

>

from Dale

Some kids do build antibodies to certain thing -- and not to others. I

would want to know if she has protective titers to the pneumococcal

vaccine and tetanus. And -- if she keeps them. Some kids build a

protective titer and then lose it 3-6 months later. It's just a

temporary spike in titers. If she's really building antibodies and

they really are functional -- she may not benefit from IVIG. But, then

again -- she might. I'm concerned that she's having lung involvement

that is not being addressed. IVIG has been shown to greatly decrease

the pneumonias, etc.

I would certainly get another opinion on her immune status -- especially

in light of another pneumonia. Even your ped may want to order IVIG

for the winter to just see if it helps -- however, I don't recommend

starting IVIG until you have a complete set of diagnostic tests done to

determine her immune status --- because once you start IVIG -- then you

have to be off for 3 months before she can be tested. So...... if you

can get her re-evaluated by a different immunologist soon -- then I

would certainly go that route. Remember to use the pediatrician to do

the arm-twisting to try to get her in sooner rather than later.

Hope you get some answers soon,

In His service,

Dale

[Guest guest]

In a message dated 10/20/2005 4:02:25 PM Pacific Standard Time,

gartland.m@... writes:

Her ped told me the dr he is recommending is great

and has started some of his other IgG deficient kids

on therapy. Those kids are doing GREAT! I would LOVE

to have someone consider Aly's issues worthy of more

than a glance. Someone other than her ped anyway.

Cheryl,

IVIG has been great for my son, it has given him quality of life. He had

chronic strep, sinus and ear infections. Frequently two or three of these

infections at the same time. He was miserable.

He has gone back to school his year...just in time to start 6th grade.

Walking Pneumonia went around the school like wildfire, but he didn't get it.

He

still gets break through sinus infections, but I think if I can find an

Immuno to start him on SubQ, it will help. has IgG 1subclass def. and

Polysaccharide antibody def.

Have you considered at least trying a trial run of IVIG? Would the Docs

consider this?

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

Sandi, I don't think her immune dr at this point would

even consider therapy. He feels like Aly is doing

fine. Since this dr is new to Aly I think(MHO) he

doesn't really believe that Aly is ALWAYS sick.

When we were discussing Aly's history he looked

totally overwhelmed and kept asking if we had an X-Ray

to 'prove' the pneumonias, etc...(which we do) and ,

the age old issue we deal with, it is more her heart

than her lungs....not true....but hard to convince a

lung dr of it.

I don't think my ped has even thought about ordering

IVIG himself???? He just felt like we needed to do

something more than we have the last couple of years.

Thus the reason for the recommendation to go to a new

dr. I will have to bring it up to him though.

Forgive me for my missunderstanding, I guess I

thought that IgG therapy was different than IVIG???

Oops....Aly has low IgG, low IgG subclasses 1 and 3,

but they are not rock bottom, just low. The rest of

her blood work was okay. Well, I should say her dr

said it was , I don't have the actual results. He said

there was nothing more to worry about. I have been

around enough dr's to know that what they tell you

isn't always the whole truth. Even if it is all

" normal " she is still getting pneumonia at least twice

a winter and we go through 3 or 4 different

antibiotics before it clears completely.

Thanks for the adivce and after much thought I

think we will take Aly to the new immune dr. I can't

see spending another winter like last year or the year

before, etc....

Thanks Cheryl

--- sassykay59@... wrote:

---------------------------------

In a message dated 10/20/2005 4:02:25 PM Pacific

Standard Time,

gartland.m@... writes:

Her ped told me the dr he is recommending is great

and has started some of his other IgG deficient kids

on therapy. Those kids are doing GREAT! I would LOVE

to have someone consider Aly's issues worthy of more

than a glance. Someone other than her ped anyway.

Cheryl,

IVIG has been great for my son, it has given him

quality of life. He had

chronic strep, sinus and ear infections. Frequently

two or three of these

infections at the same time. He was miserable.

He has gone back to school his year...just in time

to start 6th grade.

Walking Pneumonia went around the school like

wildfire, but he didn't get it. He

still gets break through sinus infections, but I think

if I can find an

Immuno to start him on SubQ, it will help. has

IgG 1subclass def. and

Polysaccharide antibody def.

Have you considered at least trying a trial run of

IVIG? Would the Docs

consider this?

Sandi, Mom to , age 12--CVID, Tetrology of

Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma,

GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

Sandi,

Just a caution about the reasons for using Sub q. It appears, and I

may be wrong, that sub q is being considered because of a hope that

it will curtail the break through sinus infections. All though in

theory if the trough levels are higher and more consisitant as they

are in sub q it would make sense that infections would be less.

However, thus far there are no studies that support the theory.

Docs that don't know too much about sub q will do research and will

find that fact in the available literature. If you are wanting to

try sub q the reasons for doing so would be

* autonomy- you can do it on your own schedule and not worry about a

nursing or clinic schedule. This becomes very important when a

child enters jr high.

* decreased or in many cases elimination of reactions associated

with IVIG. Decrease reactions also brings a decrease in the amount

of pre and post medication

* Poor venous access.

* Higher and more stable trough levels

My point is if you are going to ask any doc to support a wish for

sub q, make sure you are using an arguement they can support and is

supported in the currently available research. Keep in mind that

many docs and insurance companies are still very leary of allowing

patients to use sub q until the new FDA approved gamma is on the

market. If it is something you do want to try, make sure you are

going with a company that has experience not only teaching sub q but

also with getting it approved by insurance companies and working

with doctors, especially docs that have little or no experience with

sub q.

I hope that helps.

Kris

>

> In a message dated 10/20/2005 4:02:25 PM Pacific Standard Time,

> gartland.m@s... writes:

> Her ped told me the dr he is recommending is great

> and has started some of his other IgG deficient kids

> on therapy. Those kids are doing GREAT! I would LOVE

> to have someone consider Aly's issues worthy of more

> than a glance. Someone other than her ped anyway.

> Cheryl,

> IVIG has been great for my son, it has given him quality of

life. He had

> chronic strep, sinus and ear infections. Frequently two or three

of these

> infections at the same time. He was miserable.

> He has gone back to school his year...just in time to start 6th

grade.

> Walking Pneumonia went around the school like wildfire, but he

didn't get it. He

> still gets break through sinus infections, but I think if I can

find an

> Immuno to start him on SubQ, it will help. has IgG

1subclass def. and

> Polysaccharide antibody def.

> Have you considered at least trying a trial run of IVIG? Would

the Docs

> consider this?

>

>

>

> Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary

Valve

> transplant (2003), allergies (including meds), asthma, GERD,

Carnitine

> deficiency--also an aspiring Doctor and Director!

>

>

>

[Guest guest]

In a message dated 10/23/2005 7:40:14 AM Pacific Standard Time,

gartland.m@... writes:

Forgive me for my missunderstanding, I guess I

thought that IgG therapy was different than IVIG???

Cheryl,

No need for an apology! IVIG is a form if Ig replacement therapy. It is

also done SubQ (just under the skin rather than an IV). Please let us know what

happens with the new Immuno. I thought I would mention that 's test

results are always sent to me.

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

In a message dated 10/24/2005 4:54:33 PM Pacific Standard Time,

gartland.m@... writes:

We saw Aly's ped today for a recheck and she started

Aly on 500mg Amox. as a prophylactic until we see this

new dr. Hopefully we can get and stay healthy until

then:)

Cheryl,

That's an excellent idea at this time. I did have an afterthought...when

you see a new Immuno, maybe you could request that copies of test results be

sent to you?? Our Immuno did this without my asking; I greatly appreciated it!

They do come in handy to refer to from time to time.

Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma, GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

Sandi, Thanks.

You know all of Aly's records are sent to me too

EXCEPT these blood tests???? Are they not part of the

regular hospital paper work?????? I always have to

call up to medical records and then they have to fax a

release and blahh,blahh,blahh, 6 weeks later I get the

paper work....

We saw Aly's ped today for a recheck and she started

Aly on 500mg Amox. as a prophylactic until we see this

new dr. Hopefully we can get and stay healthy until

then:)

Thanks, Cheryl

--- sassykay59@... wrote:

---------------------------------

In a message dated 10/23/2005 7:40:14 AM Pacific

Standard Time,

gartland.m@... writes:

Forgive me for my missunderstanding, I guess I

thought that IgG therapy was different than IVIG???

Cheryl,

No need for an apology! IVIG is a form if Ig

replacement therapy. It is

also done SubQ (just under the skin rather than an

IV). Please let us know what

happens with the new Immuno. I thought I would

mention that 's test

results are always sent to me.

Sandi, Mom to , age 12--CVID, Tetrology of

Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma,

GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

If only it were that easy. Our cardio clinic and

asthma/immuno clinic will not send medical records to

the parents. You have to have a signed waiver through

medical records to have ANYTHING sent to your house.

Generally I will wait until the specialist sends it to

her ped and then I will have him fax(or send) it to

me. It is a whole lot easier and less time consuming.

Thanks again:) Cheryl

--- sassykay59@... wrote:

---------------------------------

In a message dated 10/24/2005 4:54:33 PM Pacific

Standard Time,

gartland.m@... writes:

We saw Aly's ped today for a recheck and she started

Aly on 500mg Amox. as a prophylactic until we see this

new dr. Hopefully we can get and stay healthy until

then:)

Cheryl,

That's an excellent idea at this time. I did have

an afterthought...when

you see a new Immuno, maybe you could request that

copies of test results be

sent to you?? Our Immuno did this without my asking;

I greatly appreciated it!

They do come in handy to refer to from time to time.

Sandi, Mom to , age 12--CVID, Tetrology of

Fallot, Pulmonary Valve

transplant (2003), allergies (including meds), asthma,

GERD, Carnitine

deficiency--also an aspiring Doctor and Director!

[Guest guest]

In a message dated 10/25/2005 1:46:37 PM Central Standard Time,

gartland.m@... writes:

> Generally I will wait until the specialist sends it to

> her ped and then I will have him fax(or send) it to

> me. It is a whole lot easier and less time consuming.

>

>

How we always did it was the ped would order the test, and on the test order

it would say " fax results to... " and he'd put his fax number 1st, then he put

my fax number under that. I had requested that from the start. The one time he

forgot to put it, I wrote it on myself before I handed it in at the lab (!

shhhhh!!!!!! )

The first few rounds of testing took FOREVER (up to four weeks for some

results) and that was long enough to wait already, let alone waiting to check

back

with the ped endlessly to see if the results were in. Now I can pretty much

predict what the results will be (#s have been stagnant since 2002), so it

doesn't matter so much to me to get them right away. But back then... ohhhh I

hated

that waiting. It was like, I could handle the first three weeks of waiting,

didn't think much about it. But that last week was pins and needles.

(mom to , age 6-1/2, dairy intolerant-related GERD -- 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!)