Re: NEW MEMBER~ April

[Guest guest]

April -- Welcome! You've come to a great group to get answers. Don't

ever be apologetic for asking questions. In fact -- just the opposite

-- the only dumb question is the one you don't ask - or something like

that.

That's what we're here for.

So, what do the levels mean -- it means he's got low IgG numbers. Now,

what that could mean is that it interferes with his ability to build

antibodies - but you won't know that until he gets those tests. They

will include checking to see if he builds protective titers to his

vaccinations. If he does and his clinical picture is good -- then

that's all it is - low numbers.

But, if he is unable to build titers to vaccinations and/or his clinical

picture is not good (which I suspect or you wouldn't have been looking

at his immune system), then what you are looking at is a diagnosis of

IgG deficiency. Some doctors begin treatment by prophylactic

antibiotics, others go straight to IgG replacement -- either IV or

Sub-Q. Many of the kids on this group are getting IgG replacement and

find that it really improves quality of life.

Another question you asked was essentially " how bad is that level? " .

That question can't be answered because some kids have great numbers and

are still immune deficient (they don't build protective titers) - some

kids have low numbers and do - so are not considered immune deficient.

In other words -- numbers don't tell you a whole lot. If they are low,

then the function of the B-cells needs to be checked. If they are

normal and the clinical picture is bad -- they still need to be checked.

Your doctor needs to know that she has a wonderful resource called the

Consulting Immunologist Program through the Immune Deficiency

Foundation. She/he can call and get a free consult with leading

immunologist who can tell her what diagnostic tests need to be done and

consult with her/him about treatment plans, etc. That number is

available only to your doctor -- but it is 877-666-0866.

The Immune Deficiency Foundation is also a great place for you to start

your education. Call them and ask them to send you the Patient and

Family Handbook and information on getting the diagnosis. That number

for patients is 1-800-296-4433.

Hope that helps -- and know that this is the hardest stage. Once you

get the diagnosis and start the treatment program -- it does get easier.

Let us know as you have other questions -- and believe me -- you will!!!!

In His service,

dale

april_rock wrote:

>

>

> Hi, my name is April and I am a mom of 4. I have a 9 yr old son that

> is now going through testing on his immune system.

>

> To give some background when he was 1 yrs old he was having growth

> issues so his peds ordered a growth hormone set of tests. He had all

> the growth levels as well as IGG/IGA/IGM/IGE levels, antibodies for

> IGA and Anti-gliaden AB levels done.. at the time his IGFBP-3 was

> high, and his IgG was too low. 269 and hte range was 453-916, so 1/2

> what it should've been...NO ONE SAID ANYTHING!!

>

> He has been seeing an allergist for severe allergies (new town) since

> he was 3 and we kept thinking all was still fine..when i started

> going through medical testing for my youngest child for SDS, I pulled

> out all medical records on all the kids to put in a

> binder...ANYWAY..i found the old reprts and when we had our allergy

> follow up last week i asked her about it..she was shocked no one told

> me about it....she ordered a bunch of tests.

>

> She called me with the 1st part of the testing that came in. Needless

> to say there was problems, hense the reason I am here.

>

> His IgG is 537 (694-1618

> His IgG total is 476 (610-1570)

> IgG subclass 1- 345 (390-1235)

> 2- 37 (61-430)

> 3- 37 (10-98)

> 4- 6 (1-95)

> His IgE is really high but we knew he had bad allergies...

> IgA 96 (45-250)

> IgM 66 (50-250) low end of normal

>

> We are still waiting on the rest of the testing but she has plans on

> getting more testing done...probably some for the SDS (shwachman-

> diamond syndrome) but I think more in the PID realm as well...

>

> I am sure there are those out there with MUCH MUCH worse levels then

> my son, but I am hoping for some advise on his levels and waht they

> might mean. At what point/levels did your Dr's want to do

> supplimenting of the immune system and what other testing might his

> Dr want to get??

>

> sorry for all the ?'s

>

> April~ mom to Bishop 9 yr old, still in testing

>

>