RE: No Hep B antibodies

[Guest guest]

In a message dated 1/12/2006 3:31:07 PM Pacific Standard Time, dale@...

writes:

But I believe what is more important is if they don't build

antibodies to a " type " of germ -- the pneumovax, prevnar -- shows them

that you don't build antibodies to a whole slew of germs -- I believe

that includes strep -- but I'm not sure -- so take this just as

encouragement and not as absolute.

It does include strep. was getting strep chronically until starting

IVIG. Since beginning therapy, he has not had strep ONCE!! YAY!

Sandi, Mom to , age 12, CVID

[Guest guest]

S wrote:

Can anyone calm my

> nerves a bit?

from Dale,

I believe that missing one specific titer is NOT considered terribly

important. I've read that no one really knows what all " holes " might be

discoverd in the general population if everyone was tested. I'd like to

see research on that -- but no one has money to test the healthy public!

So..... But I believe what is more important is if they don't build

antibodies to a " type " of germ -- the pneumovax, prevnar -- shows them

that you don't build antibodies to a whole slew of germs -- I believe

that includes strep -- but I'm not sure -- so take this just as

encouragement and not as absolute.

But -- it may lead them to investigate further. I'm glad you've already

tested for the pneumovax or prevnar because that's more important. I

can't say that I've ever heard anyone using the Hep titer as a general

rule. So.... relax until you get more results back.

Hope that helps,

dale

[Guest guest]

Hi ,

did not have any antibodies for Hep B either. The good new is that we

had Dr. Belcher re-administer the vacinne and antibodies came out over

the average. He said sometimes vaccinations just wear off and this could be

true in your children's cases since they are older than .

The true test is to see how they repsond to the pneunoniavax or prevar. If they

respond well to that, then chances are they might respond well to

re-administering the Hep B vaccination.

Hang in there! I know the waiting is so hard!!!!! I will pray for you and the

kids to have strengh and as you told me to keep FROG (Fully Rely On God)gin!

Have faith!

Will still be at St. V's tomorrow? From what time to what time? and I

may be able to run by between 1:30 - 2 p.m. to visit. Let me know.

Hugs!

Mom to

, 3, CVID, asthma, eczema, chronic sinus infections, peanut allergy,

environmental allergies

, 4, healthy

, 7, asthma, eczema, environ. allergies

No Hep B antibodies

Hi Everyone,

We're in the preliminary stages of doing immuno workups on the rest of our

kids. One of the tests we just go back was Hep B antibodies. None of the

kids have antibodies for Hep B, yet they all received the three shots as

infants. You all know I'm starting to panic about now! Can anyone calm my

nerves a bit? Maybe Hep B antibodies aren't that important for immune

function? We know that they all had low IgG levels a year ago, but not

super low. We are rechecking those with new pneumo titers in two weeks.

Wish us luck!

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency, antibody

deficiency, NK cell defect, and resolved adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

Please visit us at www.caringbridge.org/in/connersmith

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

, Thinking of you.....Hope all goes well and that you can stand

the waiting...

Re: No Hep B antibodies

Hi ,

did not have any antibodies for Hep B either. The good new is

that we had Dr. Belcher re-administer the vacinne and antibodies

came out over the average. He said sometimes vaccinations just wear off

and this could be true in your children's cases since they are older

than .

The true test is to see how they repsond to the pneunoniavax or prevar.

If they respond well to that, then chances are they might respond well

to re-administering the Hep B vaccination.

Hang in there! I know the waiting is so hard!!!!! I will pray for you

and the kids to have strengh and as you told me to keep FROG (Fully Rely

On God)gin! Have faith!

Will still be at St. V's tomorrow? From what time to what time?

and I may be able to run by between 1:30 - 2 p.m. to visit. Let me

know.

Hugs!

Mom to

, 3, CVID, asthma, eczema, chronic sinus infections, peanut

allergy, environmental allergies , 4, healthy

, 7, asthma, eczema, environ. allergies

No Hep B antibodies

Hi Everyone,

We're in the preliminary stages of doing immuno workups on the rest of

our

kids. One of the tests we just go back was Hep B antibodies. None of

the

kids have antibodies for Hep B, yet they all received the three shots

as

infants. You all know I'm starting to panic about now! Can anyone

calm my

nerves a bit? Maybe Hep B antibodies aren't that important for immune

function? We know that they all had low IgG levels a year ago, but

not

super low. We are rechecking those with new pneumo titers in two

weeks.

Wish us luck!

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma,

GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency,

antibody

deficiency, NK cell defect, and resolved adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

Please visit us at www.caringbridge.org/in/connersmith

This forum is open to parents and caregivers of children diagnosed

with a Primary Immune Deficiency. Opinions or medical advice stated

here are the sole responsibility of the poster and should not be taken

as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

- did they test levels to Hep B or Hib? Macey never had Hep B antibody

levels show up until she had been on IVIG for several years and they thought she

may have contracted the virus by infusion. We found out that the Hepatitis

panel is IgG specific so it was showing all the passive antibodies that were

transferred by the donors. When they ran the hepatitis panel by IgM levels they

found that she had none and that she hadn't contracted the virus.

Macey has never been vaccinated for Hepatitis (A, B or C). She did have the Hib

vaccination and it showed poor response (it is a good indicator of T-cell

function). We revaccinated with the Hib and MMR and both perked up and response

was good.

Ursula Holleman

mom to (13 yrs old) and Macey (10 yr. old with CVID)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

, when was having one of his routine bone marrow biopsies several

years ago, the doctor accidently poked himself with the needle they used for the

aspiration portion. SO they had to run the tests.... did not produce any

Hep B antibodies. We were told that this is a common finding--even in

non-immune compromised people. The hem's nurse had the Hep B shot several times

and she never mounted a response! They told me the stats, but I have forgotten

them-- I just remember it being a high number in the general population...

I don;t know the ins and outs, but I do know the PPV he had and did not respond

to was more important--showed them more-- something about protein bound

antibodies??? I know others on the list will know more.

+JMJ+

Peace Be With You,

><>Pattie

Piedmont Triad, NC

Mom to , age 11 & healthy; age 9, Shwachman-Diamond Syndrome; and

ph age 8, Shwachman-Diamond Syndrome.

[Guest guest]

-

I don't have a lot of input on the Hep B, I think Dale has covered it

quite well, however, I do want to reassure you on your other fear. All

three of my kids have a PID, all three are on IVIG (my youngest tried

sub-q, but it did not work for us, right now, though his levels were

great). I wanted to let you know, you'll be okay if it does end up that

they all have it. Actually, in some ways, I think it's easier. There

is not " one odd man out " who is sick, and holds everyone back. When

they all have it, they are a built in support system for each other. I

just wanted to reassure you, if they all end up with this, it will be

okay. You'll be able to handle it. You'll find, you're much stronger

then you thought you were, and that this can be your family's " normal. "

You'll find new ways to deal with things, you'll learn that you're kids

can help each other navigate this journey. I promise you, if they all

have this, you'll take the time you need to grieve, then you'll move

forward, and figure out a way to deal with it. I know, because it's

what we did. I thought it would be the worst thing in the world when it

was first happening, but now, we live life - with IVIG. For us it's

been the GREAT EQUALIZER - it helps the kids all be as normal as

possible, and live a normal life.

All my best to you,

Dayna

Subject: No Hep B antibodies

Hi Everyone,

We're in the preliminary stages of doing immuno workups on the rest of

our

kids. One of the tests we just go back was Hep B antibodies. None of

the

kids have antibodies for Hep B, yet they all received the three shots as

infants. You all know I'm starting to panic about now! Can anyone calm

my

nerves a bit? Maybe Hep B antibodies aren't that important for immune

function? We know that they all had low IgG levels a year ago, but not

super low. We are rechecking those with new pneumo titers in two weeks.

Wish us luck!

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency,

antibody

deficiency, NK cell defect, and resolved adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

Please visit us at www.caringbridge.org/in/connersmith

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

:

didn't have abs to polio, prevnar and HiB. They revaccinated and her

HiB came up, but it dropped off after a couple years and they had to

re-vaccinate yet again. So far they have held. The polio took two extra tries to

get up

to level, but they held. Prevnar never did work, neither did conjugated

meningococcal vaccine (Menactra?).

My niece (no PID) had the varicella vaccine but got such a severe case of

chicken pox that they pretty much figure the shot didn't work for her.

So you can see all sorts of things, I guess. Don't panic yet, put it in the

" save to panic later if needed " pile. It's a concern, but wait and see what

else comes up? I know, harder than it sounds.

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 1/12/2006 7:39:50 PM Central Standard Time,

sassykay59@... writes:

> antibodies to a " type " of germ -- the pneumovax, prevnar -- shows them

> that you don't build antibodies to a whole slew of germs -- I believe

> that includes strep -- but I'm not sure -- so take this just as

> encouragement and not as absolute.

>

doesn't make abs to Prevnar or Menactra, but has NEVER had strep

throat! She has been in classrooms with kids who had it, too! Interesting, huh?

I

never have either, and my history is " colorful " enough that I had my doc check

my IgG, IgA, IgM a couple years ago (all fine).

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)