Re: can anyone help me understand this?

[Guest guest]

from Dale,

, welcome to the group. I imagine everyone is doing New Year's

stuff with family (or dealing with sick kiddos). So, I'll see what I

can do to help you.

A great site for you will be to go to the Immune Deficiency Foundation's

website at www.primaryimmune.org to start researching what is going on.

I'm not real familiar with T-cell problems or " complement " problems --

hopefully, someone with more experience with that end can help you more.

I know that if the T-cells are there -- that's good. But they can't be

activated if the complement system is defective -- and that's not good.

So, I think you are going to have to sit down and ask a LOT of

questions of your doctors about what it all means. Most of the time

immunologists aren't comfortable talking with the parents until they get

entirely through with the testing -- that's aggravating. But again --

every single aspect of the immune system affects a great many different

things -- so just one simple tests sometimes makes quite a bit of

difference in the prognosis.

I do know more about B-cell problems and that is what is involved with

not making antibodies to vaccines. One question about her IgG levels --

did they check for IgG subclasses -- they would be listed as IgG1, IgG2,

IgG3 and IgG4. Sometimes a person can have a good total count -- but be

missing certain subclasses -- leaving them vulnerable to certain

infections. Now, if her IgG level is good, but she doesn't make

antibodies to vaccines -- then what that usually means is that her IgG

is not working (even though the numbers are good). We have a few of

those cases in this group. It's aggravating because it doesn't

perfectly fit the definition -- but is very real! By re-checking the

vaccination levels they will determine whether she was just slow in

developing her immune response (maybe they vaccinated her before her

immune system was mature enough to produce)or whether she, in fact,

doesn't mount a response. So, while the waiting is VERY, VERY hard --

it's absolutely essential to knowing whether or not she needs IVIG and

whether IVIG would benefit her.

The good news and word of encouragement that I can give you is that my

daughter did very well with IVIG. She was diagnosed at 13, started

IVIG, started getting healthy for a nice change. Went away to college,

lived in the dorm, partied (too much), had her IV's once a month in the

dorm room with a visiting home health care nurse, dropped out of college

last year to get married and lived happily ever after! (At least we

hope that's the way this story ends!) What I want you to celebrate is

that because of incredibly fascinating research, doctors these days can

offer you a treatment plan that will help your precious little girl --

that would not have been available 20 years ago!

It sounds to me like you are dealing with knowledgable doctors. So, the

worst part is going to be the waiting and waiting and waiting some more.

If they decide to start IV's, that will be something we can all help you

get through. This group of Moms have tons of experience and are willing

to help!

So, when do you expect the results of this latest titer? I'm sure the

immunologist is going to be tight-lipped until they come back. Then you

need to make an appointment to sit down and discuss everything with him.

Let me know if you have further questions.

Oh, you can call the Immune Deficiency Foundation office on Tuesday and

request their Patient and Family Care Handbook -- it's essential reading

-- but I know you want something right now -- so go to their website and

look it up. The book is free by just calling their number 1-800-296-4433.

Best wishes as you and your family travel through this time of

diagnosis. (It really is the hardest part!) And Happy New Year --

getting a diagnosis and a treatment plan will start to give you and your

daughter some good days! At least that's my prayer!

In His service,

Dale

[Guest guest]

You can also go to Baxter's Website

immunedisease.com

and request their newly dignosed kit - it has a CD rom, walks you through

everything!

Best to you.

Dayna