Re: Going to Immuno for First time, HELP!

[Guest guest]

Amy:

I'm glad you're on your way to getting some answers. Don't be like me though

and think you'll have all the answers right away -- that about drove me crazy,

all the changes in 's dx. Just when I'd think I had accepted her

diagnosis, a new test would be run and I'd have to adapt all over again. And it

may

take quite a while to get the results back -- our first few panels took as long

as FOUR weeks to get everything back! I know that sounds crazy but if you are

dealing with middlemen, like the lab for the stick, the other labs for the

actual microbiology part, then back to the first lab then over to the doc then

to you... if each side drags their feet (after all, it's not as important to

them as it is to you) it can take some time. I was not ready for that, it was

really stressful, all the waiting.

About the tests, don't quote me on this but do they even need to do IgG

subclasses if you already know the total IgG is deficient? Just a thought. They

will likely run titers for vaccines, that tells them whether the deficiency is

the quantity only (low numbers, which can come up with age) or if it's quality

too (function -- this indicates a permanent condition, but read on for

encouragement).

In our case, our daughter was diagnosed at about the same age as your son. At

that time, she had completely absent IgA, very low IgG, no isohemagglutinins

(this is the basic function of being able to react to other blood types. It is

a marker for immune disorder, usually present by age 1 or 1-1/2 I think???

didn't have it at 18 months), some partial T-cell deficits and poor

responses to polio, HiB and prevnar vaccines. Talk about getting slammed -- we

had

assumed all these tests would be fine, we only knew about the IgA before that.

You know when the mechanic calls and starts rattling off a list of all the

things wrong with your car? It was like that only it was my CHILD'S IMMUNE

SYSTEM!!! Everyone here probably knows that feeling, right!??

So I was devastated, it was like hitting a wall only the wall was my child's

future. The following year was a frustrating series of re-vaccinations and

further tests to check responses. And all the waiting associated with that. And

I

was terrified she was going to die of some horrible infection in the

meantime.

They told us that because she had the absent isohemagglutinins, poor antibody

responses to some things and some t-cell involvement, that this was NOT

transient, that she would not improve. Both immunos we saw agreed on that point.

Well guess what?!!! At age two her IgG started to come up and her t-cells

were fine, isohemagglutinins normal! At age three her IgG was at the low end of

normal and her IgA appeared out of nowhere!!! At age four the only deficit

remaining was the prevnar responses, that's her body's ability to make

antibodies

to sugar-encapsulated bacteria. Of course we'd love not to have that problem,

but gosh when you consider where she started it's a dream come true!!!!!!!!

We're status quo at age five, just the antibody responses are lacking, all her

Igs are normal!

So be prepared for confusion and an ever-changing road ahead. This group is

absolutely invaluable for explaining things clearly in non-doc-speak, and makes

the road so much easier than it could be. Ask lots of questions, we're here

to help. Looking back, I asked alot of needless questions at immuno

appointments, and I could have asked them here instead had I been a member,

making the

most out of my immuno appt instead of annoying her!! But that's okay too, it's

just fine... it's your child's health and no question is a stupid one.

And if nobody knows here knows the answer to your question, at least you know

we understand!! You can't really talk about all this stuff with many other

people, they either get tired of the complaints or are horrified at what you go

through (and who needs the pity when you have to adapt to this as being your

*normal* life now), or they try to blow sunshine up your skirt by talking about

how much worse off you could have it. Their intentions are usually good but

it's just simply a fact that it's easier to talk about this stuff with someone

who's been there or is there right now!!! I just love this group for the

support, ideas and knowledge.

So ask anything you want, but please always have hope! I pray his tests will

indicate a transient condition.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

Thanks Pam, I will make sure to ask him about the subclasses and titers...I was

told this doc really does know his stuff! dale stated that he speaks at several

IDF conferences, and I have spoken to him on the phone twice now, but he won't

give me any answers, of course until he physically sees . Thanks again, God

Bless,

Amy (Mother to , 15 mo old, GERD, Sel IGA def, IGG low, chronic Diarehha

etc...)

Pam Mork <pmork@...> wrote:

You definitely need the subclasses done and titers for any vaccinations he's

had. If the doctor knows his stuff, you'll have a whole slew of bloodwork

done and maybe get some answers soon.

Personally, I'd take the whole record and any anecdotal information you

have. When we started searching for answers, we had a list of symptoms and

a copy of Rebekah's medical records. The list of symptoms helped, but only

after we started keeping a calendar with symptoms and meds and sick days and

treatments and clinic runs, did we and the doctors start to see the

seriousness of the disease. If you have any kind of calendar of symptoms

started, or if you can generate even a partial calendar, take it along. Our

first visit to the immuno consisted of a ONE HOUR long history of Rebekah's

medical problems over her entire 30 months and a detailed family history.

So, call your relatives and ask about family members that might have died

early or anyone with autoimmune diseases. Include aunts, uncles, cousins,

nieces, nephews, and grandparents. Turns out we have a very strong family

history of Lupus, including a 7yo child who died of lupus. Needless to say,

they watch for lupus symptoms closely.

Hope this helps! Let us know how the visit went!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2

Rebekah, CVID and ??

Going to Immuno for First time, HELP!

I already know I want him to repreat the immuno

panel, but should I be asking him to screen subclasses too? What

else do I ask him about

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[Guest guest]

My DS sees Dr. Lederman at Hopkins, and he's great--very thorough in

his testing and he looks at the results carefully (in fact he saw

some weirdness in Connor's results that one of his colleagues had

missed). He is also able to make fairly complicated medical stuff

seem relatively simple.

If I were you, I'd bring anything you have, particularly the results

of any previous testing you've had done (obviously) as well as a

synopsis of symptoms and when these symptoms began so that the doctor

can get the complete medical history. If you write it down in

advance (something we didn't do, so DH and I were sitting there

saying " now when did Connor get that sonogram for his enlarged

spleen? " ). Remember that you don't have to go with a laundry list of

tests you want to have done, but rather leave it up to the doctor--

that's why he's the specialist! He should be able to decide, based

on your son's history and test results, what needs to be run.

Good luck!