Re: IgA deficiency and IgG infusions

[Guest guest]

Hi -

I have to be brief b/c of my time today but I have IgA deficiency and selective

antibody deficiency (I don't make enough protective titers to the pneumoccocal

antibodies). I used to have constant sinus infections, caught every virus, but

about 8 years ago, the drs started me on IVIG. Somehow insurance covered it b/c

of the selective antibody deficiency NOT b/c of the IgA deficiency. I was on

IVIG for about 4 years and then switched to subq and I LOVE subq. I used to have

some mild crummy feeling days after the IVIG but I've had no reactions to the

subq and I'm so much healthier than I've ever been. I hope that helps. I know

it's brief but I wanted you to know that it can be done.

Anne

IgA deficiency and IgG infusions

Hi! My daughter, 11 in a few weeks, is currently diagnosed with only

selective IgA deficiency. We were at children's hospital in Boston

yesterday and had all the labs repeated, but her health is declining,

she has never developed protective titers to any vaccination, and we

are running out of options. The immunologist suggested trying Gamma

gobulin treatments, assuming we can persuade insurance to pay even

though it is an atypical treatment for her immune deficiency.

I have tons of questions, of course, but the most important right now are:

Do any of you have insurance paying for this treatment for a kid or

kids with IgA deficiency? How did you get them to pay?

Did any of you see improvement in your child's health after starting

this treatment? Any side effects? Words of caution?

Any thoughts on IV vs. sub-q? (I've been reading the threads on this

for a while.....)

Have any of your kids gone from strictly IgA deficiency diagnosis to a

broader immune deficiency? Or, if your child shows up as only having

IgA deficiency, do you believe something additional is wrong or does

your child seem much more ill than kids with only IgA deficiency?

I don't write often, but this group means so much to me. I have IgA

deficiency and multiple sclerosis. Both kids have IgA deficiency and

my son has Asperger's......We count on all of you for support and

information. Many, many thanks!

Betty and family

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[Guest guest]

Hi Betty, My now 12yo son had no IgA when he was a year old and they told us

that was his diagnosis and then he went on to be tested at 2 and he had not

titers to pneumovax. And now he has a broader immune dysfunction in which they

are calling CVID for not having a better name for his issues. His are now mixed

T and B cell issues but it has progressed over time. Each time we get his

testing done which is about every 2-4 years he seems to be getting worse. In

looking at the little bit you shared your issue does not seem to rest on IgA

deficiency but on lack of protective titers and yes insurance does pay for it in

many cases based on that diagnosis. I would be interested to see her immune

panel because I have seen such a broad interpretation so #s over the years. Your

family clearly has some form of immune dysfunction that seem to develop into

autoimmune issues and I would think that the Ig would help her to hold off some

of those issues by possibly

re-moderating her immune system. No guarantee of that but it may help. Also we

have done both IVIg for 7 years and now we have been on SubQ for over a year. I

am very pleased with the control and normalcy it gives a family to not be going

to the doctors office/infusion center or hospital every couple of weeks. It does

require weekly infusion but it is very bearable and flexible. Hope this helps

you with the bigger picture. Our kids immune systems do seem to change overtime

and the middle school years seem to be another time of significant changes in

some kids.

BARBIE

IgA deficiency and IgG infusions

Hi! My daughter, 11 in a few weeks, is currently diagnosed with

only

selective IgA deficiency. We were at children's hospital in Boston

yesterday and had all the labs repeated, but her health is declining,

she has never developed protective titers to any vaccination, and we

are running out of options. The immunologist suggested trying Gamma

gobulin treatments, assuming we can persuade insurance to pay even

though it is an atypical treatment for her immune deficiency.

I have tons of questions, of course, but the most important right now are:

Do any of you have insurance paying for this treatment for a kid or

kids with IgA deficiency? How did you get them to pay?

Did any of you see improvement in your child's health after starting

this treatment? Any side effects? Words of caution?

Any thoughts on IV vs. sub-q? (I've been reading the threads on this

for a while.....)

Have any of your kids gone from strictly IgA deficiency diagnosis to a

broader immune deficiency? Or, if your child shows up as only having

IgA deficiency, do you believe something additional is wrong or does

your child seem much more ill than kids with only IgA deficiency?

I don't write often, but this group means so much to me. I have IgA

deficiency and multiple sclerosis. Both kids have IgA deficiency and

my son has Asperger's.. ....We count on all of you for support and

information. Many, many thanks!

Betty and family

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[Guest guest]

Dear Betty and family,

Sorry I delayed in responding to your e-mail. I wanted to respond but

had a house full of company and was unable to concentrate on my answer.

I'll try to do that now.

IgA deficiency -- apparently, you've lived with that for a long time and

know quite a bit about it -- you also know that there is no treatment

for it other than prophylactic antibiotics, and treating the symptoms

and fighting the infections once they set in. Since you live with it --

you know the routine of prevention, prevention, prevention.

However, IgA deficiency does not affect building titers to vaccinations.

That's an IgG problem. A few years ago researchers began to realize

that there was a huge group of IgA deficient patients who were a lot

sicker (clinically) than the general population of IgA deficient

patients. They discovered that most of these people had IgG subclass

deficiencies. So, my first question is -- have they checked her IgG

subclasses. Just because the total IgG is normal does not mean that all

the subclasses are being produced. So -- it could be that she's got a

subclass deficiency - and that is by definition treated by IgG

replacement (either IVIG or SCIG (SubQ)).

Secondly, if all her IgG numbers look good -- but she's not producing

protective titers, it's assumed that the IgG she's producing is not

" good " -- or it's " shooting blanks " . It's there, but it's not working.

Again, that is treated with IgG replacement.

If your doctor continues to call this an IgA deficiency that he wants to

treat with IgG you may run into difficulty with insurance -- because

it's a given that IgG doesn't help IgA deficiency. But, that's not the

problem. IgA deficiency does not cause low or non-responsive titers.

So, there's another diagnosis that needs to be made. And either one of

those diagnosis would qualify her for IgG replacement if she's not

building antibodies.

I hope that helps.

Yes, it's pretty well documented that people with IgA deficiencies often

produce children with IgA plus. So, I would suspect that your daughter

is developing into CVID or some other PID that is IgA plus something

else. Katy's numbers began to fall at age 11. She had been perfectly

healthy until puberty and then just began to have a terrible clinical

picture. IVIG gave her her life back. Then she switched to SubQ in

college and LOVED it.

As for the mommy part of it. If she's not building antibodies - she

definitely NEEDS IgG replacement. Most people see a tremendous

improvement in the quality of life. It's a really hard learning curve

and adjustment -- IV's or SubQ -- but once you start seeing their health

improve it quickly becomes just a way of life that is well worth the

hassles.

Did we see improvements? Life and death - night and day, incredible

improvement. However, because Katy had low IgA she still got sinusitis

-- but antibiotics actually began to work! In the past an ear infection

would be a 40-60 day event with repeated ruptured ear drums. After

IVIG, she could usually kick an ear infection in 1 or 2 rounds of

antibiotics without any ruptures. But, we also saw improvement in

overall health when she quit piggy-backing viruses. We saw improvement

in her skin, her gut, her fatigue, her muscle pain, etc. And we saw her

infections decrease maybe 80%.

I would certainly request SubQ. There are people who prefer IVIG -- and

that's fine as long as they have vein access and the time to take a day

off. But, SubQ at her age would be something that she could begin to

take over and learn to do herself. Katy loved the freedom that SubQ

gave her. She could hook it up and then go on with her life - going out

to eat, going back to the art studio and painting, going to the theatre

while she was doing her SubQ. Whereas with IVIG she had to just sit and

stay in one place and watch a movie or read or something. She liked the

freedom that it gave her in college to not have to schedule a nurse to

come " do it " . She could just do it herself and it didn't feel so

invasive in her life. It also helped her to not feel like a " sickie " .

It was just something she had to do to stay healthy - but didn't

involve a nurse!

Hope that answered some of your questions. Please let us know if you

have more-- or any of this is confusing. I do encourage you to order

the Patient and Family Handbook from the Immune Deficiency Foundation.

You can order that (for free) from 1-800-296-4433.

May God bless you as you begin this new phase of the journey,

In His service,

dale

plant4birds wrote:

>

>

> Hi! My daughter, 11 in a few weeks, is currently diagnosed with only

> selective IgA deficiency. We were at children's hospital in Boston

> yesterday and had all the labs repeated, but her health is declining,

> she has never developed protective titers to any vaccination, and we

> are running out of options. The immunologist suggested trying Gamma

> gobulin treatments, assuming we can persuade insurance to pay even

> though it is an atypical treatment for her immune deficiency.

>

> I have tons of questions, of course, but the most important right now are:

>

> Do any of you have insurance paying for this treatment for a kid or

> kids with IgA deficiency? How did you get them to pay?

>

> Did any of you see improvement in your child's health after starting

> this treatment? Any side effects? Words of caution?

>

> Any thoughts on IV vs. sub-q? (I've been reading the threads on this

> for a while.....)

>

> Have any of your kids gone from strictly IgA deficiency diagnosis to a

> broader immune deficiency? Or, if your child shows up as only having

> IgA deficiency, do you believe something additional is wrong or does

> your child seem much more ill than kids with only IgA deficiency?

>

> I don't write often, but this group means so much to me. I have IgA

> deficiency and multiple sclerosis. Both kids have IgA deficiency and

> my son has Asperger's......We count on all of you for support and

> information. Many, many thanks!

>

> Betty and family

>

>