Going to Immuno for First time, HELP!

[Guest guest]

I am so nervous, we have waited since April for this appointment at

s Hopkins. He has a DX of Selective IgA def, and his IGG levels

were really low, so I don't know what to think. Some tell me he

might only have the transient form of this (I hope) but since it

will probably be months before we see him again, what should I be

asking from him. 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? has so many GI issues as well, and we

think he has an allergy to wheat or milk? I plan to talk to him

about that too. What should I take with me...his whole record? Any

Suggestions would be very helpful. I know may of you have been

through this long before me, so THANKS IN ADVANCE!

Amy ( Mother to sweet baby , 15 months old, GERD, Sel Iga Def,

Igg Low, chonic diarehha etccc....)

[Guest guest]

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

[Guest guest]

from Dale, Mom to Katy, age 20, CVID

Amy, I think you were the one who said you had an appointment with Dr.

Lederman. I've only heard him speak at IDF conferences and read some of

his papers and he's the one I would take Katy to if we ever had

complications. I really think that you are in good hands -- unless he's

just totally different from the way he is at conferences! I think

he'll be the one telling you what he's going to order because he really

knows his PIDS! Make a list of questions (not more than 6-8) (my first

list had 35 -40 -- the doctor didn't like that!!!). Just be aware that

he can't predict the future -- all he can do is prepare you for

possibilities and treat the present symptoms. But just wanted you to

know that I really respect the man. I'm praying that it will be a very

informative time for you and that you'll get the diagnosis and help that

you need. Just be prepared that it takes a while to pin-point exactly

because right now everything could be transient because he's so young.

God bless you as you wait!

In His service,

Dale

Amy wrote:

>I am so nervous, we have waited since April for this appointment at

>s Hopkins.

>

[Guest guest]

Thanks for the input, I have kept a medical journal of SEan from day

one, and just recently started keeping a medicine log. I also have

copies of his entire med record, with lab results, discharge

summeries, growth charts etc...so this should be enough for him to

get a good picture of his history. I will leave the tests to him I

guess, I really hope he knows what he is doing. From all the

feedback I have recieved it seems like he is really good, so that

makes me feel better! Thanks again.

God Bless,

Amy

> 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!

>

>