Re: FW: ACIP recommends pneumococcal conjugate vaccine

[Guest guest]

Dear Ursula: God Bless, this is what we have been waiting on. This would

mean a great blessing for alissa who has not immunity to pneumonia and now

we have a good chance her immunne system will be tricked into making titers

for this like the conjugated HIB did, thanks am copying this for

immunologist we see next week, HOpe you are feeling better and Macey

too!!!!!!Still in our prayers,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: " PedPID - onelist " <PedPIDonelist>

>Subject: FW: ACIP recommends pneumococcal conjugate vaccine

>Date: Mon, 25 Oct 1999 23:36:19 -0400

>

>FYI

>

>CDC Advisory Committee Votes to

>Recommend First Pneumococcal Conjugate

>Vaccine for Routine Use in Children

>

>October 25, 1999

>

>ATLANTA, Oct. 22 /PRNewswire/ via NewsEdge

>Corporation -- The Centers for Disease Control

>and Prevention (CDC) Advisory Committee on

>Immunization Practices (ACIP) voted unanimously

>today to recommend Prevenar, the first

>pneumococcal conjugate vaccine, for routine use

>in all healthy children up to age 5 with priority

>use in specific populations. The recommendation

>by the Committee is contingent upon FDA

>licensure of the vaccine and an additional review

>if any new safety or efficacy data become

>available. On November 5, an FDA Advisory

>Committee will consider the vaccine, which is

>currently under FDA's " priority review. "

>

>The vaccine was developed by Wyeth Lederle

>Vaccines -- a division of Wyeth-Ayerst

>Laboratories (the pharmaceutical division of

>American Home Products Corporation).

>

>The recommendation stated that in the event of

>resource or logistic constraints, immunizations

>should be provided according to the following

>priorities:

>

>Priority 1

>

>- All children up to age 24 months;

>

>- Children age 24 to 59 months with sickle cell

>disease, with functional or anatomic asplenia,

> or HIV infection;

>

>- Children age 24 to 59 months who are

>immunocompromised, who have chronic

>illness, or who are Alaskan natives or American

>Indians.

>

>Priority 2

>

>- All healthy children age 24 to 35 months;

>

>- Children age 36 to 59 months who are at

>increased risk for pneumococcal

>infection, including: children who have

>experienced frequent or complicated

> episodes of acute otitis media during

>the previous year,

>children who are socially or economically

>disadvantaged, or children who

>attend group child care.

>

>Priority 3

>

>- Other children age 36 to 59 months of age not

>included in the above groups.

>

>

>For infants, the Committee recommends that the

>vaccine be given in four doses at 2, 4, 6, and 12

>to 15 months; for children who are 7 to 11

>months, three doses; for children who are 12 to

>23 months, two doses; and for children 2 years

>or older, only one dose is needed.

>

>SOURCE American Home Products Corporation

>

>Ursula - & Macey (4 yr old w/CVID) mom

>

>

>

>------------------------------------------------------------------------

>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.

><< text3.html >>

[Guest guest]

Ursula,

Have you heard if the new vaccine can be given to our children to check the

immune response?

When I talked to the immuno, he stated that it is not a good thing for

checking the response to the bacteria. I am not too familiar in this, so it

was like he was speaking a foreign language. Any thoughts?

Belinda Rose,

mom to Cassie, igg immunodefficient, asthma, chronic sinusitis

[Guest guest]

My two cents on the conjugated pneumococcal vaccine.....

Two of the " original " Cd5-Cd19 patients (meaning, two of the first found)

were given the conjugated vaccine and responded somewhat well....only to find

out after a very short time that it totally failed...NO MEMORY whatsoever.

It was given again, and the same thing, only this time no response

period...while it is true that the Cd5-Cd19 PID is a poorly understood PID,

it is important to know that for a short time physicians thought that this

was some positive response, only to find out shortly thereafter, that there

was ZERO memory. In addition, while we do know with certainty that the

Cd5-Cd19 PID is a combination T/B cell PID this was disheartening news to all

the families involved. Make sure you ask LOTS of questions and provide

information that you know before seeking this out. We will keep searching!!!

My two cents,

Autumn mom to Mark Cd5-Cd19 PID/ GERD, ASA, A1A

[Guest guest]

,

You're soooooo smart. I have to tell you your explanation really did clear

up things. When the immunologist was explaining it to me, I just had a look

like " okay, I think I know what you are talking about, but I am not sure. If

you explain it again, I am going to really be lost. " So, I just went with

the first explanation.

Thanks for the info on the port also. Cassie is not too happy about the

surgery. She is going to miss their big Halloween costume parade. But, she

does know that it will help with all the " pokes " she has to get every month.

Belinda Rose,

mom to Allyssa and Cassie, igg immunodefficient, asthma, chronic sinusitis

[Guest guest]

Belinda,

Congrats... you have a very smart immunologist (believe it or not, there

are going to be some immunologists out there who don't understand the

implications of this vaccine...). While the conjugated pneumococcal

vaccine will be great for hopefully tricking more kids' immune systems

into responding to pneumococcus (one of the bacteria that is the

greatest problem to people with CVID/hypogamma), the vaccine will be of

limited use in the pre- and post- evaluations that are often used to

evaluate whether someone's B cells are effective at producing the

vaccine (and therefore whether someone has a B cell defect or selective

antibody deficiency).

Without going into unnecessary detail, here's the background:

- Pneumococcus (like H. Flu, also known as HIB), is one of the rare

bacteria that does not require T cell interaction with the B cells in

order for the body to respond. It only requires the action of the B

cells. So one of the best ways to see if the body has the ability to

make antibodies (and in particular, one of the ways to test whether the

body has the ability to make antibodies to this bacteria, because it's

so commonly a problem in CVID and other B-cell involved PIDs) is to test

the antibody level to pneumococcus, give the vaccine, and then test

afterward for antibodies. This gives a way to see how " effective " the B

cells are. Someone may have perfect numbers of IgG but very little

response to this injection, and that will give some indication that the

person's immune system (particularly the B-cell mediated, or humoral,

response) may not be intact, despite the good numbers. Usually in that

case, it will be called selective antibody deficiency.

- One thing with most children is that their B cell (humoral) immune

response is frequently underdeveloped, compared to the T cell (cellular)

response (which is often normal in the same kids -- it develops fully

earlier). This is something most will grow out of in the first couple

of years. But until it happens, even kids who down the road will not

have a PID can be very susceptible to H. flu and pneumococcus. So they

came up with a vaccine that hooks the HIB (H. Flu) molecule to a protein

that the T-cells respond to, and that tricks the T-cells into getting

involved in what's normally a pure B cell response (I'm skipping all the

technical detail, but if you are interested, I'd be happy to explain how

this all works). Because the T-cells are developed when the B-cells

aren't in most infants and children, this tricks the body into producing

antibodies. The highest cause of meningitis in infants and young

children has historically been HIB, so that's why it's often called the

meningitis shot -- but in the past, it was a useless shot to give,

because so many children had underdeveloped B-cells and would make such

a poor (or short-lived) response... so this conjugated vaccine has been

a lifesaver (literally) by getting the T-cells involved in order to

produce a strong and lasting response. They are now hoping to do the

same with Pneumococcus... take what's normally a B cell fought bacteria

and involve the T-cells to make a stronger and longer lasting response.

This should in theory help prevent ear, sinus and lung infections in

" normal " children, and is a huge boost to the children whose B cells

continue to be less than functional (like those with PIDs). Normally,

by age 2 or so, a healthy child will have developed the ability to fight

pneumococcus, but as many people know from their childrens' pre- and

post- titers, many kids with PIDs will continue throughout their lives

to have problems fighting pneumococcus.

- The reason it's going to confuse the situation some, though, is that

the pneumovax has historically been a good way to test for an immune

system defect or delay, because it was a way to selectively look at

B-cell (humoral) function. Most children with CVID or hypogamma do not

have detectable T-cell problems, so if these children are given the new

conjugated vaccine, chances are many will respond pretty well (like

Annette's daughter Alissa did with the HIB -- she couldn't make any

memory before, but when it was hooked to the protein, the T-cells helped

her make lasting immunity). But the new vaccine will make it more

difficult to figure out if there's something just wrong with the B

cells. So if all the testing is done, and no one cares about pre- and

post- titers ever again, the conjugated vaccine is a great thing to get,

but say for someone with a selective antibody deficiency, once they get

the conjugated vaccine, they will probably make IgG to the pneumococcus

using that T cell response... but that may mask the fact that if it

weren't conjugated, they wouldn't make any response. Honestly, once

someone my age is diagnosed, I'd say, " get the shot! " because it would

be great for someone to have that protection (and in fact may wipe the

diagnosis of selective antibody deficiency off the map in the future...

because if you can trick the T-cells into doing what the B-cells can't,

you're still going to have the protection, and why take IVIG for years

if a vaccine will do the trick?). But I know it's harder in kids,

because sometimes that pneumovax challenge is the only test that can

help pick out the children who have a selective antibody deficiency, and

that helps parents and doctors determine whether they have an ongoing

need for IVIG.(and in theory, if the B cells don't work to HIB and

pneumococcus, are there other, non-testable, things they don't respond

to? That's going to be the big question, I think... and the most

complicated part of the impact of these conjugated vaccines) I think

it's a great move toward better health, but for people with an existing

diagnosis, it may cloud the water a little bit. For the future, though,

I think it's going to prevent at least a few kids from needing IVIG

their whole lives. That, to me, is a great thing.

I hope that helps and doesn't confuse the issue more. Let me know if

I've explained poorly...

Good luck with the port surgery! I've had 2 now and I am sooooo glad -

it was a great decision on my part. Hope you discover the same thing.

One thing, though - the first time, it didn't hurt at all really, but

the second surgery - where they used the jugular instead of the

subclavian vein - was a lot more painful. If Cassie appears to be in

pain, don't hesitate to tell someone and get her meds.. they told me it

wouldn't hurt, but I have a fairly high tolerance and it did... but I'd

hate to see a little one suffer because they didn't have the ability to

advocate for themselves.

Take care,

[Guest guest]

Dear : Thanks for explaining it on layman's terms. And I hope you

are feeling better. Alissa's infusion went well today,I was a little

disappointed the immunologist will not let us run the IV any faster than 90

on the infusion machine. He is afraid of anaphalaxis. We had been running

it at 150 at home. She had no reaction then, but he is the boss. Take care

and good luck with classes,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: FW: ACIP recommends pneumococcal conjugate vaccine

>Date: Tue, 26 Oct 1999 13:03:52 -0500

>

>Belinda,

>

>Congrats... you have a very smart immunologist (believe it or not, there

>are going to be some immunologists out there who don't understand the

>implications of this vaccine...). While the conjugated pneumococcal

>vaccine will be great for hopefully tricking more kids' immune systems

>into responding to pneumococcus (one of the bacteria that is the

>greatest problem to people with CVID/hypogamma), the vaccine will be of

>limited use in the pre- and post- evaluations that are often used to

>evaluate whether someone's B cells are effective at producing the

>vaccine (and therefore whether someone has a B cell defect or selective

>antibody deficiency).

>

>Without going into unnecessary detail, here's the background:

>- Pneumococcus (like H. Flu, also known as HIB), is one of the rare

>bacteria that does not require T cell interaction with the B cells in

>order for the body to respond. It only requires the action of the B

>cells. So one of the best ways to see if the body has the ability to

>make antibodies (and in particular, one of the ways to test whether the

>body has the ability to make antibodies to this bacteria, because it's

>so commonly a problem in CVID and other B-cell involved PIDs) is to test

>the antibody level to pneumococcus, give the vaccine, and then test

>afterward for antibodies. This gives a way to see how " effective " the B

>cells are. Someone may have perfect numbers of IgG but very little

>response to this injection, and that will give some indication that the

>person's immune system (particularly the B-cell mediated, or humoral,

>response) may not be intact, despite the good numbers. Usually in that

>case, it will be called selective antibody deficiency.

>- One thing with most children is that their B cell (humoral) immune

>response is frequently underdeveloped, compared to the T cell (cellular)

>response (which is often normal in the same kids -- it develops fully

>earlier). This is something most will grow out of in the first couple

>of years. But until it happens, even kids who down the road will not

>have a PID can be very susceptible to H. flu and pneumococcus. So they

>came up with a vaccine that hooks the HIB (H. Flu) molecule to a protein

>that the T-cells respond to, and that tricks the T-cells into getting

>involved in what's normally a pure B cell response (I'm skipping all the

>technical detail, but if you are interested, I'd be happy to explain how

>this all works). Because the T-cells are developed when the B-cells

>aren't in most infants and children, this tricks the body into producing

>antibodies. The highest cause of meningitis in infants and young

>children has historically been HIB, so that's why it's often called the

>meningitis shot -- but in the past, it was a useless shot to give,

>because so many children had underdeveloped B-cells and would make such

>a poor (or short-lived) response... so this conjugated vaccine has been

>a lifesaver (literally) by getting the T-cells involved in order to

>produce a strong and lasting response. They are now hoping to do the

>same with Pneumococcus... take what's normally a B cell fought bacteria

>and involve the T-cells to make a stronger and longer lasting response.

>This should in theory help prevent ear, sinus and lung infections in

> " normal " children, and is a huge boost to the children whose B cells

>continue to be less than functional (like those with PIDs). Normally,

>by age 2 or so, a healthy child will have developed the ability to fight

>pneumococcus, but as many people know from their childrens' pre- and

>post- titers, many kids with PIDs will continue throughout their lives

>to have problems fighting pneumococcus.

>- The reason it's going to confuse the situation some, though, is that

>the pneumovax has historically been a good way to test for an immune

>system defect or delay, because it was a way to selectively look at

>B-cell (humoral) function. Most children with CVID or hypogamma do not

>have detectable T-cell problems, so if these children are given the new

>conjugated vaccine, chances are many will respond pretty well (like

>Annette's daughter Alissa did with the HIB -- she couldn't make any

>memory before, but when it was hooked to the protein, the T-cells helped

>her make lasting immunity). But the new vaccine will make it more

>difficult to figure out if there's something just wrong with the B

>cells. So if all the testing is done, and no one cares about pre- and

>post- titers ever again, the conjugated vaccine is a great thing to get,

>but say for someone with a selective antibody deficiency, once they get

>the conjugated vaccine, they will probably make IgG to the pneumococcus

>using that T cell response... but that may mask the fact that if it

>weren't conjugated, they wouldn't make any response. Honestly, once

>someone my age is diagnosed, I'd say, " get the shot! " because it would

>be great for someone to have that protection (and in fact may wipe the

>diagnosis of selective antibody deficiency off the map in the future...

>because if you can trick the T-cells into doing what the B-cells can't,

>you're still going to have the protection, and why take IVIG for years

>if a vaccine will do the trick?). But I know it's harder in kids,

>because sometimes that pneumovax challenge is the only test that can

>help pick out the children who have a selective antibody deficiency, and

>that helps parents and doctors determine whether they have an ongoing

>need for IVIG.(and in theory, if the B cells don't work to HIB and

>pneumococcus, are there other, non-testable, things they don't respond

>to? That's going to be the big question, I think... and the most

>complicated part of the impact of these conjugated vaccines) I think

>it's a great move toward better health, but for people with an existing

>diagnosis, it may cloud the water a little bit. For the future, though,

>I think it's going to prevent at least a few kids from needing IVIG

>their whole lives. That, to me, is a great thing.

>

>I hope that helps and doesn't confuse the issue more. Let me know if

>I've explained poorly...

>

>Good luck with the port surgery! I've had 2 now and I am sooooo glad -

>it was a great decision on my part. Hope you discover the same thing.

>One thing, though - the first time, it didn't hurt at all really, but

>the second surgery - where they used the jugular instead of the

>subclavian vein - was a lot more painful. If Cassie appears to be in

>pain, don't hesitate to tell someone and get her meds.. they told me it

>wouldn't hurt, but I have a fairly high tolerance and it did... but I'd

>hate to see a little one suffer because they didn't have the ability to

>advocate for themselves.

>Take care,

>

>

>------------------------------------------------------------------------

>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.

><< text3.html >>

[Guest guest]

Autumn: hope everyone is hanging in there, you are still in our prayers,

thank you for your feed back on the vaccine,

God Bless,

annette and alissa

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: FW: ACIP recommends pneumococcal conjugate vaccine

>Date: Tue, 26 Oct 1999 16:35:31 EDT

>

>My two cents on the conjugated pneumococcal vaccine.....

>

>Two of the " original " Cd5-Cd19 patients (meaning, two of the first found)

>were given the conjugated vaccine and responded somewhat well....only to

>find

>out after a very short time that it totally failed...NO MEMORY whatsoever.

>It was given again, and the same thing, only this time no response

>period...while it is true that the Cd5-Cd19 PID is a poorly understood PID,

>it is important to know that for a short time physicians thought that this

>was some positive response, only to find out shortly thereafter, that there

>was ZERO memory. In addition, while we do know with certainty that the

>Cd5-Cd19 PID is a combination T/B cell PID this was disheartening news to

>all

>the families involved. Make sure you ask LOTS of questions and provide

>information that you know before seeking this out. We will keep

>searching!!!

>

>My two cents,

>

>Autumn mom to Mark Cd5-Cd19 PID/ GERD, ASA, A1A

>

>------------------------------------------------------------------------

>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.

><< text3.html >>

[Guest guest]

has anyone been advised not to get the pneuom. vaccine? Our naturopath has

done everything but get on his knees and beg us not to give the vaccine. any

comments????

sandra

[Guest guest]

,

thanks for your insight on the pneumo vaccine, were lucky to have you as part

of our group...can't wait until we can call you Dr. !!!

[Guest guest]

,

Sorry to hear about the bad reaction, how scary... there are several web

sites that talk about adverse vaccine reactions to healthy as well as sick

children. It is really scary. I've pretty much decided, no vaccines unless

God strikes my house with lightening to let me know that I'm making the

wrong choices. If you come across any new info, I'd love to hear about it

and maybe I'll change my mind....but for now I remain an oucast to our

medical community...such a rebel.

[Guest guest]

Hi ,

I don't know anything about anyone else, but my 3 year old had the pneumovax

a couple months ago and she had a really bad reaction to it. (Granted the

doctors want to say she only had a virus that just happened to attack her

within hours of the shot). It started out with just a fever (gave motrin).

Then in the middle of the night she woke up screaming. She had a 105.4 temp

and could not stand to be touched. Took her to the ER to get it documented

(the attending blew us off). She did not walk or stand for 3 days,

developed a rash up the entire right side of her body and a large red welt

where the shot was given. The reason the docs don't think it was a reaction

was because her lymphs were up a little (very little). But call it what you

want, she has had pneumonia before and several other " virus's " and never had

a fever over 103. Sorry, but it was just too odd for me to trust it with my

kids again. They want to give her another in a year or so, but I will not

let them. I could not forgive myself if she had another reaction and had a

perminant injury. We are the ones who have to live with the decisions, not

the doctors. And when the time comes, I won't let my son who is worse off

than my daughter have it either (which of course means that sooner or later,

me and the doctor are going to be butting heads).

Please don't misunderstand me, I do not have anything against shots, I just

don't feel they are safe for MY KIDS!! Well, actually for my two youngest,

my oldest has never had a problem and I will continue to immunize her as

schedualed.

Re: FW: ACIP recommends pneumococcal conjugate vaccine

>From: T0872@...

>

>has anyone been advised not to get the pneuom. vaccine? Our naturopath has

>done everything but get on his knees and beg us not to give the vaccine.

any

>comments????

>

>

>sandra

>

>>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.