Re: First Visit to Immunologist this week

[Guest guest]

remind us what the initial testing has shown. Total IgG level, pneumo titers,

IgA level? lung problems (CT,PFT's). Also any other testing. There will be

some tests that you want to wait until another appointment to go over and save

you time for more pressing issues.

You mention that he's been worse off here lately, what with?

Ursula - mom to (16) and Macey (13,CVID)

http://www.caringbridge.org/visit/maceyholleman

@...: kmay77@...: Sun, 30 Nov 2008

19:20:51 +0000Subject: First Visit to Immunologist this week

Everyone on here has been so helpful in the past that I wanted to see if anyone

could tell me what my first visit to the Immunologist would be like. We see our

first immuno at CHOP this week. What usually happens in the first visit? A bunch

of tests? Also, what questions should I be prepared to answer? We have all of

our labwork etc already down there, but jut curious about how I can prepare

myself. It's kind of crazy right now, after sitting around for 3years with

nothing but shoulder shrugs from local docs, all of a sudden CHOP has us seeing

a ton of specialists this month: immuno, neuro, endo and a doc at the diagnostic

center. I am very grateful for this b/c my son has been at his worst (he's only

3) these past 6weeks. I hope to finally get some answers soon (even though I'm

scared to know). Thanks!

Kim__________________________________________________________Access your email

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ess_112008

[Guest guest]

Are you talking Phila or Pittsburgh? Mark was at CHOP in Phila.

During his visit, they did a thorough exam, spent a lot of time

talking to us about PID and what it means, as well as IVIG. It would

be helpful if you take with you any logs/notes about his illnesses

and how often they are, what his symptoms are, what atbs work and how

long he needs them (ie--longer than the usual 10 day course), any

hospitalizations, etc. They looked over all of my notes pretty

carefully. They will likely draw a great deal of blood work to try

and get to the root of the problem.

I would sit down and think of all the questions/concerns you have and

write them down, then take them with you to the appointment. That

helps keep you on track and you won't forget anything.

Good luck!

Best wishes,

mom to Mark 7 CVID

>

>

> Everyone on here has been so helpful in the past that I wanted to

see if anyone could tell me what my first visit to the Immunologist

would be like. We see our first immuno at CHOP this week. What

usually happens in the first visit? A bunch of tests? Also, what

questions should I be prepared to answer? We have all of our labwork

etc already down there, but jut curious about how I can prepare

myself. It's kind of crazy right now, after sitting around for

3years with nothing but shoulder shrugs from local docs, all of a

sudden CHOP has us seeing a ton of specialists this month: immuno,

neuro, endo and a doc at the diagnostic center. I am very grateful

for this b/c my son has been at his worst (he's only 3) these past

6weeks. I hope to finally get some answers soon (even though I'm

scared to know). Thanks! Kim

> _________________________________________________________________

> Access your email online and on the go with Windows Live Hotmail.

> http://windowslive.com/Explore/Hotmail?

ocid=TXT_TAGLM_WL_hotmail_acq_access_112008

>

>

[Guest guest]

--- If you've kept a log....or even if you can actually remember, type

up a log of recent illnesses, abx, treatments, how often you have been

to the dr, how long the illnesses lasted. This is a good way to track

if an illness is stubborn, recurrent, etc, if your childs infections

tend to take more than one round of abx, and an all around better

picture of how sick your child has been.

valarie

In , May <kmay77@...> wrote:

>

>

> Everyone on here has been so helpful in the past that I wanted to

see if anyone could tell me what my first visit to the Immunologist

would be like. We see our first immuno at CHOP this week. What

usually happens in the first visit? A bunch of tests? Also, what

questions should I be prepared to answer? We have all of our labwork

etc already down there, but jut curious about how I can prepare

myself. It's kind of crazy right now, after sitting around for 3years

with nothing but shoulder shrugs from local docs, all of a sudden CHOP

has us seeing a ton of specialists this month: immuno, neuro, endo

and a doc at the diagnostic center. I am very grateful for this b/c

my son has been at his worst (he's only 3) these past 6weeks. I hope

to finally get some answers soon (even though I'm scared to know).

Thanks! Kim

> _________________________________________________________________

> Access your email online and on the go with Windows Live Hotmail.

>

http://windowslive.com/Explore/Hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_access_1120\

08

>

>