Re: IgG subclass deficiency?

April 13, 2008

, Hi Sounds like you have some of the usual testing done. Do you have an

appt with an immunogist? Have you contacted the IDF to get more info. There are

some great books as well as a referral service to help you get an Immunogist

that works with PID patients. How old is your son? Where do you live? What other

testing has he had done? How about his antibodies. Total IgG, IgA IgM etc. Just

a few of the testing that may need to be done to determine what kind of PID if

he does have one. Generally it takes a while to get a diagnosis before they

start Gammaglobulin since you want to know as much as you can BEFORE you change

his systems with the treatment.

BARBIE

IgG subclass deficiency?

Hi all,

My son had a test which showed low IgG subclasses 2 and 4. The numbers

were: IgG subclass 2 was 161 , ref 242-700

IgG subclass 4 was 1 , ref 4-86

subclass 3 is on the low end of normal at 34, ref 22-176

subclass 1 is on the low end of normal at 101, ref 70-315

Is low the same thing as being deficient, or does the number have to

be 0 to be considered deficient? We are totally new to this. From

these numbers would he be considered to have IgG subclass deficiency,

and thus a PID?

He has been seriously ill for the last 9 months.

We are desperate to help him as he has not been able to attend school

at all and is suffering so much. He has joint and muscle pain,

headaches, stomach aches, low fevers, sore throats, constipation, food

allergies and sensitivities, and severe fatigue. He has trouble

gaining weight, and is pale and looks like a cancer patient. He has

already been diagnosed with Chronic Fatigue Immune Deficiency Syndrome

due to the fatigue and high viral titers to EBV and HHV6. He also was

diagnosed with PANDAS, an autoimmune strep condition.

Our PCP said we should see an immunologist, who she thinks would

recommend IVIG. Based on this description, is he a good candidate for

IVIG, and would insurance cover it?

Thanks for any feedback,

Cyndi Kershner

__________________________________________________

April 13, 2008

" Chronic Fatigue Immune Deficiency Syndrome...based on this description, is he a

good candidate for IVIG, and would insurance cover it? "

Cyndi,

I'm not able to make a diagnosis but it does sound suspicious for an immune

deficiency. Insurance is very specific about what they will cover for IVIG. If

your immuno orders it, I'd make sure you fit the criteria and have the correct

diagnostic code. IVIG is not typically reimbursed for chronic fatigue and I'd

hate for you to get a denial letter if he has a true PID.

April 14, 2008

Dear Cyndi

> Is low the same thing as being deficient, or does the number have to

> be 0 to be considered deficient?

Yes and no. Having low numbers is an indication that there may be a

problem. But no one knows all the variables in the healthy population

-- so it's possible that some people do just fine with low numbers.

But, low IgG subclasses DO very often indicate that a person is having

trouble covering all the protection that he needs.

With his clinical picture and these numbers -- I certainly would want a

clinical immunologist to be looking at him. The next step in testing is

to find out whether he is building antibodies. They do that by checking

to see what titers he has, possibly re-vaccinating and seeing the

response. If he's not building antibodies, then it's a clear picture of

a PID regardless of the numbers. An Immunologist will also want to

check his t-cells and complement system to make sure that they know

everything that is going on before beginning treatment.

Waiting on the diagnosis is the hardest part of this process. It is

time consuming and hard to wait on results. But... absolutely essential

for a good outcome.

May God bless you as you journey through this phase. (It too shall pass!)

In His service,

dale

April 19, 2009

Hi ,

Our son has Ig1 deficency. We ran the subclasses - 1-4.

Only Ig1 was low. We have an overall IgG that is on the low end.

From what I undesrtand it means that a certain Ig is affected but I cant recall

why or what is means...

I am sorry- it was a crazy day when this was explained to me... & I dont remember

much from that day.

B.

________________________________

From: <kristin-smith@...>

< >

Sent: Sunday, April 19, 2009 4:39:46 PM

Subject: IgG subclass deficiency?

I am going over Kelsey's lab results and was curious if anyone knows about

subclass deficiencies? She is not on IVIG, her IgG1 is a little below normal,

but her total IgG is 618. I read something about needing treatment if it's two

standard deviations below normal, I have no idea what that means. Can someone

enlighten me?

Thanks!

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07 - from an anonymous donor)

Kelsey (13-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge. org/visit/ smithkids

April 19, 2009

Hi ,

Our son has Ig1 deficency. We ran the subclasses - 1-4.

Only Ig1 was low. We have an overall IgG that is on the low end.

From what I undesrtand it means that a certain Ig is affected but I cant recall

why or what is means...

I am sorry- it was a crazy day when this was explained to me... & I dont remember

much from that day.

B.

________________________________

From: <kristin-smith@...>

< >

Sent: Sunday, April 19, 2009 4:39:46 PM

Subject: IgG subclass deficiency?

I am going over Kelsey's lab results and was curious if anyone knows about

subclass deficiencies? She is not on IVIG, her IgG1 is a little below normal,

but her total IgG is 618. I read something about needing treatment if it's two

standard deviations below normal, I have no idea what that means. Can someone

enlighten me?

Thanks!

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07 - from an anonymous donor)

Kelsey (13-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge. org/visit/ smithkids

April 20, 2009

HI My comment would be that the numbers are not near as important as the

function and how he is doing clinically. Has he had any function tests by

checking his antibodies after vaccinating. Generally they take blood vaccinate

with Pneumovax and then 3-6 weeks later they retest . Most of our kids have

borderline or low normal IgG levels with varying levels of subclasses. There are

now over 100 different PIDs ( only about 30 when my son was diagnosed in 1996)>

If his major organs such as his lungs, sinuses, and gut etc are being damaged

due to chronic infections then that is what you want to focus on. It is such a

difficult decision to start gamma globulin but for us it made MUCH more sense to

get off of the incessant use of antibiotics that we do not know what the long

term effects would be and to protect his body from damage. Also for my son it

was effecting his personality since he was sick so much that he could not be a

normal kid. My son is now 13

and gets SubQ gamma globulin weekly. He has not had an antibiotic for over a

year and you would NEVER know he has an immune disorder. It makes it hard to

sometimes make him do his infusions since he does not remember how sick he use

to be. Gamma globulin does have risks but in my opinion in our case the starting

of infusions IV when he was 3 FAR outweighed the risks. We do not have ANY known

side effects with sub Q. If you have not had the antibodies tested it seems that

would be the next step to verify whether his body is being able to protect him

from the infections.