RE: Question about prevnar vaccine - very confused!!!

[Guest guest]

Ashton has CVID. She made some antibodies to tetnus, but nothing to the

pneumovax. They hope she is transient, but said that will not know until she

hits

puberty. She is receiving IVIG every 3 weeks. She only started in March of this

year, so we are waiting to see how she dose when school starts. She would

pick up everything and not get over it. I am glad to finally know why and that

the treatments should help her live more normally. We are praying that her body

kicks in sometime, but realize that it may never. I am so thankful for a

treatment. She seems to be getting stronger.

Lloyd

Mom to Ashton CIVD, Asthma, Dyslexia & Marina Asthma both lactose

intolerant.

[Guest guest]

I think the key phrases here are " (who does not have much knowledge in

immune deficiencies) " and " live normally without any intervention " .

I use the family doctor, a GP, for everyone, including . (When he

was being seen by a pediatrician, she never even thought about an immune

deficiency despite the fact that for 13 out of 17 months if he were not on

antibiotics, he was sick. Nice lady, good doctor, but never had a PID

patient before. Also had an ego.) I switched him over to my GP, who made

no bones about saying that, as he had never had a PID patient before, he

would follow whatever protocol the immunologist suggested.

As far as living normally without any intervention: Has your child done

that? Since you are here, I tend to think not. I am thankful that they

think that this is something that is probably transient in nature. In the

meantime, your immunologist may suggest either protective medications or

even IVIG until 's own immune system kicks in, in order for your child

to have a chance of living normally in the interim. (When they suspect

that child's system has not fully matured, they may use IVIG for a period

of time and then do a trial period off of the IVIG to see if his system has

matured enough to function on it's own. Probably the decision about

whether or not to recommend IVIG treatment will depend greatly on the type,

frequency and severity of your son's illnesses. If the illnesses seem to

be more related to an IgA deficiency, the IVIG treatment would not help

significantly enough to be worth the time and discomfort as the IVIG

products contain little to no IgA, depending on the product. If his

illnesses seem to be more related to a dysfunction of your son's IgG, then

they may recommend the IVIG.)

If your pediatrician is not up to par on PID and your immunologist is (some

doctors who carry the title of immunologist are actually primarily

allergists and tend not to be as up-to-date on immunology despite the

title), it would make sense to make your medical decisions based on the

most qualified doctor's recommendations. BTW, the IDF has a toll-free

number specifically for doctors of PID patients. If you need that number

to give to your pediatrician, I'll look it up, or someone else here

probably has it at their fingertips.

I hate the wating too, but what good news that he may outgrow it!

I'd better close before this becomes a book. Besides, I get to go pick up

my oldest from camp! Yeah!

God bless,

Wenoka (AMY - 9 / Sam - Hyper IgM Syndrome, Sensory Integration Disorder,

Seizure Disorder / Christi - 3)

At 12:15 PM 07/30/2004 -0000, you wrote:

> Ok, I am confused...they initially diagnosed with Selective IgA

> Deficiency - now the immuno at s Hopkins is saying that he is

> below normal but not deficient (so he feels is developmentally

> " "

> test caame back with no response - basically he did not build

> Some say

> that he has an immune system but no function which would require

> IVIG's, however our PED (who does not have much knowledge in immune

> deficincies) stated to me that a lot of kids don't build antibodies

> to certian vaccines and live normally without any intervention, and

> So which is

> If you don't build antibodies to the prevnar vaccine, but you

>

> Another mommy on this site has the same situation and her immuno

> I am really confused - any help would be

> appreciated!

>

> Hope all your babies are well!

> HUGS,

> Amy

>

[Guest guest]

Since I'm new to this game, I know this probably doesn't help much, but my

son Conner has had some mixed results with antibodies too (he's much older

though). He did produce antibodies to his early immunizations, Tetnus, etc.

When we did the pneumococcal vaccine he made antibodies to type 1 (still

below normal, but a four-fold increase), but to no other types. It's so

crazy to try to figure out what all this means. Our doc said that basically

means that the b-cells and t-cells just aren't communicating well. If you

don't produce antibodies when exposed to an antigen, then that is a disorder

of the immune system. A true immunodeficiency means that one or more

components of the immune system is unable to respond effectively.

Also, I wouldn't get too hung up on what they call the disorder (IgA def or

CVID), treating it properly is what really counts, I'd definitely defer to

the specialist over your ped. Let's hope the most important part of the

diagnosis is that it's transient! That would be so wonderful!

Take care,

Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and

CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, mild hearing loss/unaided),

and Kelsey - surviving triplet (8, hearing - but not listening!)

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[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Amy wrote:

>Ok, I am confused...they initially diagnosed with Selective IgA

>Deficiency - now the immuno at s Hopkins is saying that he is

>below normal but not deficient (so he feels is developmentally

>delayed)

>

Amy, it's perfectly normal to feel confused right at the beginning, and

while that is true of many diagnosis, there is an additional problem

with Immune Deficiencies that you and all our other newcomers will have

to face. That's that this diagnosis and treatment is so new that most

pediatricians have NEVER seen a case of PID. Many

allergist/immunologist have never seen a case of PID but have at least

read about them -- however, many of them have only heard of SCID which

is " bubble boy " PID. What we are dealing with is new technology, new

diagnosis, cutting edge medical research. The goal of the Immune

Deficiency Foundation is to educate, educate, educate. But we have not

even scratched the surface of reaching doctors with information.

Therefore, various regions of the country treat PID differently than

other pockets of researchers, etc. There is no standard of care,

standard of diagnosis, standard of treatment. So.... if you listen to

your pediatrician -- you may get really strange information if they are

not connected to up-to-date research. It is vitally important to sign

up your pediatrician to get the newsletters from the Immune Deficiency

Foundation. It's totally free and you can just call and give them your

doctor's name to put on their mailing list. 1-800-296-4433.

Some doctors have heard of selective IgA deficiency. Many have heard

of SCID. But more than that and many of them are just guessing! It's

amazing to me to realize that the first IVIG ever administered was in

1981. A lot of people died of complications because it was not pure

enough. It had a very high concentration of IgA as well, so people with

IgA antibodies were in bad trouble! In the early 90's an entire

population of PID was impacted by the discovery that IVIG could transmit

hepatitis. We lost many patients during that time. Since then more and

more safeguards have been put on IVIG to insure that no new virus can

contaminate the drug. There are no guarantees but we live at a very

good time in medical history!

I feel that every child with PID deserves to be seen at least once by

what we call a tertiary level of Immunologist. That means first level

is your pediatrician. Second level is your local immunologist. Third

or tertiary means someone who is a clinical immunologist, current with

the latest research happening through the Immune Deficiency Foundation.

Dr. Lederman certainly qualifies as top level! If he's not up on the

latest and greatest -- nobody is!

Now, after Katy saw the tertiary level of immunologist and got the

diagnosis secure, etc. we found that we preferred our local

pediatrician to call the shots. So, we used our local immunologist and

local pediatrician for all of Katy's care after that point.

So this diagnosis is not only new for you -- it is brand new for your

pediatrician and possibly any local immunologists that you are seeing.

If you consider that there are approximately 50,000 PID patients in the

U.S. and that includes all of the 70 varieties, then more than likely --

your doctor has not seen one! And the text books will not catch up

for another 10 years. says that at her Medical School

the section on Immunology was limited to AIDS. That's just the way it

is -- but we can work together to change it!!!!!! So, instead of

complaining about your doctor not being informed -- get him

educated!!!!! Sign him up for the IDF newsletter. Give him a card

with the Consulting Immunologist Program on it. That phone number is

877-666-0866. This number is for doctor's use only and provides a free

consultation with an Immunologist who is up to date on latest treatment,

diagnosis, etc.

I'm sorry it's not an easy diagnosis. It's rather scary to think of

your baby being on the cutting edge of science. But, that's where you

are! There are a LOT of unknowns ahead. But, from where I sit, things

certainly look much, much better than when Katy was diagnosed in 1997.

At that time, there were only about 10 centers in the U.S. that knew

how to diagnose and treat PID. Now, they are scattered all over the

U.S. as doctors are coming up to speed and learning.

Hope that helps you to understand that it will probably be impossible to

find a pediatrician who knows about PID -- but what you need is someone

who is willing to learn.

In His service,

Dale