RE: have a question about a syndrome..

[Guest guest]

Hi there. Being a new parent to this journey can be a little scary - so

let me start with, welcome, we've all been there, and we're here to

help. Please let us know you're sons story - what exactly was he

diagnosed with - there are many deficiencies, and many involve IgG, what

kind of doctor is he seeing? What types of infections has he been

getting?

The first couple things I'd suggest is visiting the following websites -

www.primaryimmune.org <http://www.primaryimmune.org/> this is the

Immune Defiency Foundation Website, they publish a book called the

Patient and Family Handbook (the Immune Family Bible to some) please

call this organization, register with them, and have all their materials

sent out to you.

www.jmfworld.org <http://www.jmfworld.org/> the Modell Foundation also

has many wonderful materials for your use - their secondary website is

www.info4pi.org <http://www.info4pi.org/> and there should be a link to

order free materials from there too.

www.immunedisease.com <http://www.immunedisease.com/> Run by one of the

manufatures of IVIG - the treatment product for many of our immune kids

- this website is helpful (including the video game - believe it or

not!) There is a place to order materials there too - make sure you get

the Newly Diagnosed Kit, which has an amazing CDRom for patients!

If your child is on IVIG - or even if not, because it's such a great

resource - check out www.igliving.com <http://www.igliving.com/> it's a

new magazine that just came out, and subscriptions are free - and

profits made are going to patient organizations like the ones mentioned

above.

Please, make your self at home here.

Dayna, Mom to 3 PIDD kids - Charlie, 5, 3, Tommy 2 - all on IVIG.

have a question about a syndrome..

hello im looking for more information about IgG...

can anyone help me? i looked on and some medical books but its

limited? i really like to read the new syndrome my son was just diag.

with

thank you all hugsss

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[Guest guest]

lilwildones wrote:

> hello im looking for more information about IgG...

> can anyone help me? i looked on and some medical books but its

> limited? i really like to read the new syndrome my son was just diag.

> with

> thank you all hugsss

>

Hi Mikey's Mom, is your name Lil? Please try to remember to sign your

letters so we'll know how to respond properly!

Sounds like you've been really punched with lots of diagnosis. Let me

try to help you sort this one out.

Dayna, just sent you some really great places to look up more information.

With Di's syndrome, some of the kids develop a low IgG and that's

just still part of the same syndrome -- so your diagnosis will stay the

same -- just mean another complication.

IgG is one of the 5 immunoglobulins that make up one part of the immune

system. IgG specifically is the part that is responsible for building a

protective army of germ-fighters that are pre-positioned to attack

specific germs. If the IgG is low, then your body is not as prepared to

attack germs as it should be. It is responsible for building antibodies

to specific germs.

So -- one way they may test that is to vaccinate for a specific disease

- prevnar or pneumovax or tetanus, etc. and see if he can build

antibodies (or titers) against that particular germ. In a healthy

person, vaccination (insertion of small amount of germ) causes the body

to build a large antibody response (titer) to that germ. If you have

low IgG -- you may build no response or a low response to it.

The good news is that IgG can be replaced. Today it is replaced either

by IV or by SubQ (which is under the skin). Most of the kids on this

list are doing one or the other and they DO get used to it and it

becomes a new normal. The great news is that most kids feel so much

better after they stop having just one infection after another.

So --- welcome to the group. I know it's hard waiting, but there's

still a lot of tests that need to be done. However, since he already

has the diagnosis for Di -- I'm sure you are used to that.

Celebrate every day and let us know how we can help you. And again --

congratulations for surviving the first 4 crazy years!

In His service,

dale