Re: Selective Carbohydrate Antibody Deficiency

January 24, 2011

I think it may be Selective Polysaccharide Antibody Deficiency. I have never

heard the other phrase. It is the test they do with either Pnuemovaccine or

Prevnar to test for antibody response and whether they keep them. I would

encourage you to talk to him more to see what he suggests to do such as using

antibiotics to prevent infection. Generally this is one of the areas of

deficiencies that may require some support.

BARBIE

________________________________

From: " AngSabAlMom@... " <AngSabAlMom@...>

Sent: Mon, January 24, 2011 4:02:02 AM

Subject: Selective Carbohydrate Antibody Deficiency

Hello Everyone,

I have a 15 year old son with learning disabilites who has had

chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

viruses since pre School age. He doesn't get sick to often in the summer or

when on vacations from school. Which his school and his doctors think he

fakes being sick to get out of school. I had told them I think his immune

system is compromised which is why he is well when he is home and gets sick

when he returns to school with all the germs and illness. Well I have taken

him to many specialists and his pediatrician said all his test were normal. I

took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent. So

he isn't producing antibodies to fight off infections. I was unable to

find anything specific to Selective Carbohydrate Antibody Deficiency does

anyone else have this conditions? Any information would be greatly appreciated.

I am grateful for this group and look forward to corresponding with you

all.

Sincerely,

Angsabalmom@...

January 28, 2011

Hi Barbie,

I couldn't find anything online about his diagnoses. The doctor gave

him a pneumonia shot and a blood work order to test his blood in 2 months.

Then he said if that doesn't' help he will try another shot and then Iv

therapy if needed. I am very new to this and trying to learn as much as I can

and I am so thankful for these groups.

In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

mother5590@... writes:

I think it may be Selective Polysaccharide Antibody Deficiency. I have

never

heard the other phrase. It is the test they do with either Pnuemovaccine

or

Prevnar to test for antibody response and whether they keep them. I would

encourage you to talk to him more to see what he suggests to do such as

using

antibiotics to prevent infection. Generally this is one of the areas of

deficiencies that may require some support.

BARBIE

________________________________

From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

<_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

_ _ (mailto: )

Sent: Mon, January 24, 2011 4:02:02 AM

Subject: Selective Carbohydrate Antibody Deficiency

Hello Everyone,

I have a 15 year old son with learning disabilites who has had

chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

viruses since pre School age. He doesn't get sick to often in the summer

or

when on vacations from school. Which his school and his doctors think he

fakes being sick to get out of school. I had told them I think his immune

system is compromised which is why he is well when he is home and gets

sick

when he returns to school with all the germs and illness. Well I have

taken

him to many specialists and his pediatrician said all his test were

normal. I

took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

So

he isn't producing antibodies to fight off infections. I was unable to

find anything specific to Selective Carbohydrate Antibody Deficiency does

anyone else have this conditions? Any information would be greatly

appreciated.

I am grateful for this group and look forward to corresponding with you

all.

Sincerely,

_Angsabalmom@..._ (mailto:Angsabalmom@...)

[Non-text portions of this message have been removed]

January 28, 2011

Hi Barbie,

I couldn't find anything online about his diagnoses. The doctor gave

him a pneumonia shot and a blood work order to test his blood in 2 months.

Then he said if that doesn't' help he will try another shot and then Iv

therapy if needed. I am very new to this and trying to learn as much as I can

and I am so thankful for these groups.

In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

mother5590@... writes:

I think it may be Selective Polysaccharide Antibody Deficiency. I have

never

heard the other phrase. It is the test they do with either Pnuemovaccine

or

Prevnar to test for antibody response and whether they keep them. I would

encourage you to talk to him more to see what he suggests to do such as

using

antibiotics to prevent infection. Generally this is one of the areas of

deficiencies that may require some support.

BARBIE

________________________________

From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

<_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

_ _ (mailto: )

Sent: Mon, January 24, 2011 4:02:02 AM

Subject: Selective Carbohydrate Antibody Deficiency

Hello Everyone,

I have a 15 year old son with learning disabilites who has had

chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

viruses since pre School age. He doesn't get sick to often in the summer

or

when on vacations from school. Which his school and his doctors think he

fakes being sick to get out of school. I had told them I think his immune

system is compromised which is why he is well when he is home and gets

sick

when he returns to school with all the germs and illness. Well I have

taken

him to many specialists and his pediatrician said all his test were

normal. I

took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

So

he isn't producing antibodies to fight off infections. I was unable to

find anything specific to Selective Carbohydrate Antibody Deficiency does

anyone else have this conditions? Any information would be greatly

appreciated.

I am grateful for this group and look forward to corresponding with you

all.

Sincerely,

_Angsabalmom@..._ (mailto:Angsabalmom@...)

[Non-text portions of this message have been removed]

January 28, 2011

the pneumonia vaccine is the Pneumovaccine and that is how they test the

antibodies. So the words I used would be correct. Have you gone to the Immune

Deficiency Foundation website http://www.primaryimmunedeficiency.org? There is

LOTS of info there as well as there is info on this group if you got to the

resources area.

BARBIE

________________________________

From: " AngSabAlMom@... " <AngSabAlMom@...>

Sent: Fri, January 28, 2011 4:20:24 AM

Subject: Re: Selective Carbohydrate Antibody Deficiency

Hi Barbie,

I couldn't find anything online about his diagnoses. The doctor gave

him a pneumonia shot and a blood work order to test his blood in 2 months.

Then he said if that doesn't' help he will try another shot and then Iv

therapy if needed. I am very new to this and trying to learn as much as I can

and I am so thankful for these groups.

In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

mother5590@... writes:

I think it may be Selective Polysaccharide Antibody Deficiency. I have

never

heard the other phrase. It is the test they do with either Pnuemovaccine

or

Prevnar to test for antibody response and whether they keep them. I would

encourage you to talk to him more to see what he suggests to do such as

using

antibiotics to prevent infection. Generally this is one of the areas of

deficiencies that may require some support.

BARBIE

________________________________

From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

<_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

_ _ (mailto: )

Sent: Mon, January 24, 2011 4:02:02 AM

Subject: Selective Carbohydrate Antibody Deficiency

Hello Everyone,

I have a 15 year old son with learning disabilites who has had

chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

viruses since pre School age. He doesn't get sick to often in the summer

or

when on vacations from school. Which his school and his doctors think he

fakes being sick to get out of school. I had told them I think his immune

system is compromised which is why he is well when he is home and gets

sick

when he returns to school with all the germs and illness. Well I have

taken

him to many specialists and his pediatrician said all his test were

normal. I

took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

So

he isn't producing antibodies to fight off infections. I was unable to

find anything specific to Selective Carbohydrate Antibody Deficiency does

anyone else have this conditions? Any information would be greatly

appreciated.

I am grateful for this group and look forward to corresponding with you

all.

Sincerely,

_Angsabalmom@..._ (mailto:Angsabalmom@...)

[Non-text portions of this message have been removed]

January 28, 2011

He may have also called it Prevnar.

Ursula

On Jan 28, 2011, at 2:04 PM, Barbara Jimenez <mother5590@...> wrote:

> the pneumonia vaccine is the Pneumovaccine and that is how they test the

> antibodies. So the words I used would be correct. Have you gone to the Immune

> Deficiency Foundation website http://www.primaryimmunedeficiency.org? There is

> LOTS of info there as well as there is info on this group if you got to the

> resources area.

>

> BARBIE

>

> ________________________________

> From: " AngSabAlMom@... " <AngSabAlMom@...>

>

> Sent: Fri, January 28, 2011 4:20:24 AM

> Subject: Re: Selective Carbohydrate Antibody Deficiency

>

> Hi Barbie,

> I couldn't find anything online about his diagnoses. The doctor gave

> him a pneumonia shot and a blood work order to test his blood in 2 months.

> Then he said if that doesn't' help he will try another shot and then Iv

> therapy if needed. I am very new to this and trying to learn as much as I can

> and I am so thankful for these groups.

>

> In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

> mother5590@... writes:

>

> I think it may be Selective Polysaccharide Antibody Deficiency. I have

> never

> heard the other phrase. It is the test they do with either Pnuemovaccine

> or

> Prevnar to test for antibody response and whether they keep them. I would

> encourage you to talk to him more to see what he suggests to do such as

> using

> antibiotics to prevent infection. Generally this is one of the areas of

> deficiencies that may require some support.

>

> BARBIE

>

> ________________________________

> From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

> <_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

> _ _ (mailto: )

> Sent: Mon, January 24, 2011 4:02:02 AM

> Subject: Selective Carbohydrate Antibody Deficiency

>

> Hello Everyone,

> I have a 15 year old son with learning disabilites who has had

> chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

> viruses since pre School age. He doesn't get sick to often in the summer

> or

> when on vacations from school. Which his school and his doctors think he

> fakes being sick to get out of school. I had told them I think his immune

> system is compromised which is why he is well when he is home and gets

> sick

> when he returns to school with all the germs and illness. Well I have

> taken

> him to many specialists and his pediatrician said all his test were

> normal. I

> took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

> he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

> Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

> So

> he isn't producing antibodies to fight off infections. I was unable to

> find anything specific to Selective Carbohydrate Antibody Deficiency does

> anyone else have this conditions? Any information would be greatly

> appreciated.

>

> I am grateful for this group and look forward to corresponding with you

> all.

> Sincerely,

> _Angsabalmom@..._ (mailto:Angsabalmom@...)

>

January 28, 2011

He may have also called it Prevnar.

Ursula

On Jan 28, 2011, at 2:04 PM, Barbara Jimenez <mother5590@...> wrote:

> the pneumonia vaccine is the Pneumovaccine and that is how they test the

> antibodies. So the words I used would be correct. Have you gone to the Immune

> Deficiency Foundation website http://www.primaryimmunedeficiency.org? There is

> LOTS of info there as well as there is info on this group if you got to the

> resources area.

>

> BARBIE

>

> ________________________________

> From: " AngSabAlMom@... " <AngSabAlMom@...>

>

> Sent: Fri, January 28, 2011 4:20:24 AM

> Subject: Re: Selective Carbohydrate Antibody Deficiency

>

> Hi Barbie,

> I couldn't find anything online about his diagnoses. The doctor gave

> him a pneumonia shot and a blood work order to test his blood in 2 months.

> Then he said if that doesn't' help he will try another shot and then Iv

> therapy if needed. I am very new to this and trying to learn as much as I can

> and I am so thankful for these groups.

>

> In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

> mother5590@... writes:

>

> I think it may be Selective Polysaccharide Antibody Deficiency. I have

> never

> heard the other phrase. It is the test they do with either Pnuemovaccine

> or

> Prevnar to test for antibody response and whether they keep them. I would

> encourage you to talk to him more to see what he suggests to do such as

> using

> antibiotics to prevent infection. Generally this is one of the areas of

> deficiencies that may require some support.

>

> BARBIE

>

> ________________________________

> From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

> <_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

> _ _ (mailto: )

> Sent: Mon, January 24, 2011 4:02:02 AM

> Subject: Selective Carbohydrate Antibody Deficiency

>

> Hello Everyone,

> I have a 15 year old son with learning disabilites who has had

> chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

> viruses since pre School age. He doesn't get sick to often in the summer

> or

> when on vacations from school. Which his school and his doctors think he

> fakes being sick to get out of school. I had told them I think his immune

> system is compromised which is why he is well when he is home and gets

> sick

> when he returns to school with all the germs and illness. Well I have

> taken

> him to many specialists and his pediatrician said all his test were

> normal. I

> took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

> he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

> Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

> So

> he isn't producing antibodies to fight off infections. I was unable to

> find anything specific to Selective Carbohydrate Antibody Deficiency does

> anyone else have this conditions? Any information would be greatly

> appreciated.

>

> I am grateful for this group and look forward to corresponding with you

> all.

> Sincerely,

> _Angsabalmom@..._ (mailto:Angsabalmom@...)

>

January 30, 2011

I have been to the primaryimmune.org the link that you provided didn't seem

to work I read a lot and they sent me much information for which I am

grateful for. Thanks for your information and help it is greatly appreciated!

Sincerely,

In a message dated 1/28/2011 2:04:55 P.M. Eastern Standard Time,

mother5590@... writes:

the pneumonia vaccine is the Pneumovaccine and that is how they test the

antibodies. So the words I used would be correct. Have you gone to the

Immune

Deficiency Foundation website _http://www.primaryimmunedeficiency.org?_

(http://www.primaryimmunedeficiency.org/?) There is

LOTS of info there as well as there is info on this group if you got to

the

resources area.

BARBIE

________________________________

From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

<_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

_ _ (mailto: )

Sent: Fri, January 28, 2011 4:20:24 AM

Subject: Re: Selective Carbohydrate Antibody Deficiency

Hi Barbie,

I couldn't find anything online about his diagnoses. The doctor gave

him a pneumonia shot and a blood work order to test his blood in 2 months.

Then he said if that doesn't' help he will try another shot and then Iv

therapy if needed. I am very new to this and trying to learn as much as I

can

and I am so thankful for these groups.

In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

_mother5590@..._ (mailto:mother5590@...) writes:

I think it may be Selective Polysaccharide Antibody Deficiency. I have

never

heard the other phrase. It is the test they do with either Pnuemovaccine

or

Prevnar to test for antibody response and whether they keep them. I would

encourage you to talk to him more to see what he suggests to do such as

using

antibiotics to prevent infection. Generally this is one of the areas of

deficiencies that may require some support.

BARBIE

________________________________

From: " __AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

(mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) "

<__AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

(mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) >

__ _ (mailto:_ ) _

(mailto:_ _ (mailto: ) )

Sent: Mon, January 24, 2011 4:02:02 AM

Subject: Selective Carbohydrate Antibody Deficiency

Hello Everyone,

I have a 15 year old son with learning disabilites who has had

chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

viruses since pre School age. He doesn't get sick to often in the summer

or

when on vacations from school. Which his school and his doctors think he

fakes being sick to get out of school. I had told them I think his immune

system is compromised which is why he is well when he is home and gets

sick

when he returns to school with all the germs and illness. Well I have

taken

him to many specialists and his pediatrician said all his test were

normal. I

took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

So

he isn't producing antibodies to fight off infections. I was unable to

find anything specific to Selective Carbohydrate Antibody Deficiency does

anyone else have this conditions? Any information would be greatly

appreciated.

I am grateful for this group and look forward to corresponding with you

all.

Sincerely,

__Angsabalmom@..._ (mailto:_Angsabalmom@...) _

(mailto:_Angsabalmom@..._ (mailto:Angsabalmom@...) )

[Non-text portions of this message have been removed]

January 30, 2011

I have been to the primaryimmune.org the link that you provided didn't seem

to work I read a lot and they sent me much information for which I am

grateful for. Thanks for your information and help it is greatly appreciated!

Sincerely,

In a message dated 1/28/2011 2:04:55 P.M. Eastern Standard Time,

mother5590@... writes:

the pneumonia vaccine is the Pneumovaccine and that is how they test the

antibodies. So the words I used would be correct. Have you gone to the

Immune

Deficiency Foundation website _http://www.primaryimmunedeficiency.org?_

(http://www.primaryimmunedeficiency.org/?) There is

LOTS of info there as well as there is info on this group if you got to

the

resources area.

BARBIE

________________________________

From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

<_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

_ _ (mailto: )

Sent: Fri, January 28, 2011 4:20:24 AM

Subject: Re: Selective Carbohydrate Antibody Deficiency

Hi Barbie,

I couldn't find anything online about his diagnoses. The doctor gave

him a pneumonia shot and a blood work order to test his blood in 2 months.

Then he said if that doesn't' help he will try another shot and then Iv

therapy if needed. I am very new to this and trying to learn as much as I

can

and I am so thankful for these groups.

In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

_mother5590@..._ (mailto:mother5590@...) writes:

I think it may be Selective Polysaccharide Antibody Deficiency. I have

never

heard the other phrase. It is the test they do with either Pnuemovaccine

or

Prevnar to test for antibody response and whether they keep them. I would

encourage you to talk to him more to see what he suggests to do such as

using

antibiotics to prevent infection. Generally this is one of the areas of

deficiencies that may require some support.

BARBIE

________________________________

From: " __AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

(mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) "

<__AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

(mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) >

__ _ (mailto:_ ) _

(mailto:_ _ (mailto: ) )

Sent: Mon, January 24, 2011 4:02:02 AM

Subject: Selective Carbohydrate Antibody Deficiency

Hello Everyone,

I have a 15 year old son with learning disabilites who has had

chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

viruses since pre School age. He doesn't get sick to often in the summer

or

when on vacations from school. Which his school and his doctors think he

fakes being sick to get out of school. I had told them I think his immune

system is compromised which is why he is well when he is home and gets

sick

when he returns to school with all the germs and illness. Well I have

taken

him to many specialists and his pediatrician said all his test were

normal. I

took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

So

he isn't producing antibodies to fight off infections. I was unable to

find anything specific to Selective Carbohydrate Antibody Deficiency does

anyone else have this conditions? Any information would be greatly

appreciated.

I am grateful for this group and look forward to corresponding with you

all.

Sincerely,

__Angsabalmom@..._ (mailto:_Angsabalmom@...) _

(mailto:_Angsabalmom@..._ (mailto:Angsabalmom@...) )

[Non-text portions of this message have been removed]

January 30, 2011

sorry it is the http://www.primaryimmune.org The antibody deficiency can be a

symptom of several different immune deficiencies or a deficiency alone. It will

be up to your doctor to figure out which one your son fits into. My son we

believe has CVID but they often will not diagnose it until later in life. But he

has a multitude of both B and T cell issues that they put together into a

specific Common Variable immune Deficiency. I would get a second opinion of

another Immunologist to get another opinion so you can choose how to deal with

it for your son. The important thing is to try to protect his organs so that

they will last him a life time.

BARBIE

________________________________

From: " AngSabAlMom@... " <AngSabAlMom@...>

Sent: Sun, January 30, 2011 5:13:57 AM

Subject: Re: Selective Carbohydrate Antibody Deficiency

I have been to the primaryimmune.org the link that you provided didn't seem

to work I read a lot and they sent me much information for which I am

grateful for. Thanks for your information and help it is greatly appreciated!

Sincerely,

In a message dated 1/28/2011 2:04:55 P.M. Eastern Standard Time,

mother5590@... writes:

the pneumonia vaccine is the Pneumovaccine and that is how they test the

antibodies. So the words I used would be correct. Have you gone to the

Immune

Deficiency Foundation website _http://www.primaryimmunedeficiency.org?_

(http://www.primaryimmunedeficiency.org/?) There is

LOTS of info there as well as there is info on this group if you got to

the

resources area.

BARBIE

________________________________

From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

<_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

_ _ (mailto: )

Sent: Fri, January 28, 2011 4:20:24 AM

Subject: Re: Selective Carbohydrate Antibody Deficiency

Hi Barbie,

I couldn't find anything online about his diagnoses. The doctor gave

him a pneumonia shot and a blood work order to test his blood in 2 months.

Then he said if that doesn't' help he will try another shot and then Iv

therapy if needed. I am very new to this and trying to learn as much as I

can

and I am so thankful for these groups.

In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

_mother5590@..._ (mailto:mother5590@...) writes:

I think it may be Selective Polysaccharide Antibody Deficiency. I have

never

heard the other phrase. It is the test they do with either Pnuemovaccine

or

Prevnar to test for antibody response and whether they keep them. I would

encourage you to talk to him more to see what he suggests to do such as

using

antibiotics to prevent infection. Generally this is one of the areas of

deficiencies that may require some support.

BARBIE

________________________________

From: " __AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

(mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) "

<__AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

(mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) >

__ _ (mailto:_ ) _

(mailto:_ _ (mailto: ) )

Sent: Mon, January 24, 2011 4:02:02 AM

Subject: Selective Carbohydrate Antibody Deficiency

Hello Everyone,

I have a 15 year old son with learning disabilites who has had

chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

viruses since pre School age. He doesn't get sick to often in the summer

or

when on vacations from school. Which his school and his doctors think he

fakes being sick to get out of school. I had told them I think his immune

system is compromised which is why he is well when he is home and gets

sick

when he returns to school with all the germs and illness. Well I have

taken

him to many specialists and his pediatrician said all his test were

normal. I

took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

So

he isn't producing antibodies to fight off infections. I was unable to

find anything specific to Selective Carbohydrate Antibody Deficiency does

anyone else have this conditions? Any information would be greatly

appreciated.

I am grateful for this group and look forward to corresponding with you

all.

Sincerely,

__Angsabalmom@..._ (mailto:_Angsabalmom@...) _

(mailto:_Angsabalmom@..._ (mailto:Angsabalmom@...) )

[Non-text portions of this message have been removed]

February 7, 2011

Ok the doctor just called and told me to google only Carbohydrate Antibody

Deficiency. And he said the what it mans is that bacteria has carbohydrates

(sugars) in then and my son doesn't respond to them.And that 1 in 100 people

have this and his genes don't work on bacteria mucus is carbohydrates.And it is

a common syndrome.3-4 of his genes are not working right.And I can have it being

his mom if I get sinusitis.I asked if he is susceptible to infections and he

said only sinusitis and pnemonia. I asked is he has a immune deficiency and he

said no. If my son responds to the pnemonia shot he hgave him then he said we

are done if not then we will talk about that then.I aksed is he can have his

vaccinations and he said yes.And it is not genetic.Now I am more confused,LOL.

It doesn't take much.I can't seem to find any info. on the web that a person

other than a doctor can undserstand.If anyone knows of this condition or knows

where I can get info on it please let me know it would be greatly appreciated!

You can email me directly if that is ok at Angsabalmom@... Thanks in

advance!

>

> sorry it is the http://www.primaryimmune.org The antibody deficiency can be a

> symptom of several different immune deficiencies or a deficiency alone. It

will

> be up to your doctor to figure out which one your son fits into. My son we

> believe has CVID but they often will not diagnose it until later in life. But

he

> has a multitude of both B and T cell issues that they put together into a

> specific Common Variable immune Deficiency. I would get a second opinion of

> another Immunologist to get another opinion so you can choose how to deal with

> it for your son. The important thing is to try to protect his organs so that

> they will last him a life time.

>

> BARBIE

>

> ________________________________

> From: " AngSabAlMom@... " <AngSabAlMom@...>

>

> Sent: Sun, January 30, 2011 5:13:57 AM

> Subject: Re: Selective Carbohydrate Antibody Deficiency

>

> I have been to the primaryimmune.org the link that you provided didn't seem

> to work I read a lot and they sent me much information for which I am

> grateful for. Thanks for your information and help it is greatly appreciated!

> Sincerely,

>

> In a message dated 1/28/2011 2:04:55 P.M. Eastern Standard Time,

> mother5590@... writes:

>

> the pneumonia vaccine is the Pneumovaccine and that is how they test the

> antibodies. So the words I used would be correct. Have you gone to the

> Immune

> Deficiency Foundation website _http://www.primaryimmunedeficiency.org?_

> (http://www.primaryimmunedeficiency.org/?) There is

> LOTS of info there as well as there is info on this group if you got to

> the

> resources area.

>

> BARBIE

>

> ________________________________

> From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

> <_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

> _ _ (mailto: )

> Sent: Fri, January 28, 2011 4:20:24 AM

> Subject: Re: Selective Carbohydrate Antibody Deficiency

>

> Hi Barbie,

> I couldn't find anything online about his diagnoses. The doctor gave

> him a pneumonia shot and a blood work order to test his blood in 2 months.

> Then he said if that doesn't' help he will try another shot and then Iv

> therapy if needed. I am very new to this and trying to learn as much as I

> can

> and I am so thankful for these groups.

>

> In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

> _mother5590@..._ (mailto:mother5590@...) writes:

>

> I think it may be Selective Polysaccharide Antibody Deficiency. I have

> never

> heard the other phrase. It is the test they do with either Pnuemovaccine

> or

> Prevnar to test for antibody response and whether they keep them. I would

> encourage you to talk to him more to see what he suggests to do such as

> using

> antibiotics to prevent infection. Generally this is one of the areas of

> deficiencies that may require some support.

>

> BARBIE

>

> ________________________________

> From: " __AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

> (mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) "

> <__AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

> (mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) >

> __ _ (mailto:_ ) _

> (mailto:_ _ (mailto: ) )

> Sent: Mon, January 24, 2011 4:02:02 AM

> Subject: Selective Carbohydrate Antibody Deficiency

>

> Hello Everyone,

> I have a 15 year old son with learning disabilites who has had

> chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

> viruses since pre School age. He doesn't get sick to often in the summer

> or

> when on vacations from school. Which his school and his doctors think he

> fakes being sick to get out of school. I had told them I think his immune

> system is compromised which is why he is well when he is home and gets

> sick

> when he returns to school with all the germs and illness. Well I have

> taken

> him to many specialists and his pediatrician said all his test were

> normal. I

> took him to a Allergist/Immunologist out of Yale New Haven hospital in Ct.

> he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

> Antibody Deficiency. His IGG (14 subclasses) are pretty much non existent.

> So

> he isn't producing antibodies to fight off infections. I was unable to

> find anything specific to Selective Carbohydrate Antibody Deficiency does

> anyone else have this conditions? Any information would be greatly

> appreciated.

>

> I am grateful for this group and look forward to corresponding with you

> all.

> Sincerely,

> __Angsabalmom@..._ (mailto:_Angsabalmom@...) _

> (mailto:_Angsabalmom@..._ (mailto:Angsabalmom@...) )

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

February 7, 2011

http://docs.google.com/viewer?a=v & q=cache:Gfi4iW1l1FQJ:www.fightbackkc.org/Dr_Ne\

mechek_Comments_Against_Proposed_LCD.pdf+%22Carbohydrate+Antibody+Deficiency%22 & \

hl=en & gl=us & pid=bl & srcid=ADGEESiifKxleIHTSMMzaWRyi5WdnSCwc02FjNv7flQXoZVYsic66ML\

N2HucVV_IFmXMACGuKwL55MIBXp0rSCQHNxTIbWEk4ZDuf46DmrqypTNuLh5JRsD4z1qIWJ3I1AYoynD\

-2T-t & sig=AHIEtbSBTIHLrAMlKzb9_GHBTjJz-fUW4w

<http://docs.google.com/viewer?a=v & q=cache:Gfi4iW1l1FQJ:www.fightbackkc.org/Dr_N\

emechek_Comments_Against_Proposed_LCD.pdf+%22Carbohydrate+Antibody+Deficiency%22\

& hl=en & gl=us & pid=bl & srcid=ADGEESiifKxleIHTSMMzaWRyi5WdnSCwc02FjNv7flQXoZVYsic66M\

LN2HucVV_IFmXMACGuKwL55MIBXp0rSCQHNxTIbWEk4ZDuf46DmrqypTNuLh5JRsD4z1qIWJ3I1AYoyn\

D-2T-t & sig=AHIEtbSBTIHLrAMlKzb9_GHBTjJz-fUW4w>long

link but it is a PDF file with your term in it. It does say that it is a

PID and it does say that IVIG will help.

Very last paragraph on page 10.

I will also try to email the PDF directly to you.

Ursula

On Mon, Feb 7, 2011 at 12:10 PM, angsabalmom <AngSabAlMom@...> wrote:

>

> Ok the doctor just called and told me to google only Carbohydrate Antibody

> Deficiency. And he said the what it mans is that bacteria has carbohydrates

> (sugars) in then and my son doesn't respond to them.And that 1 in 100 people

> have this and his genes don't work on bacteria mucus is carbohydrates.And it

> is a common syndrome.3-4 of his genes are not working right.And I can have

> it being his mom if I get sinusitis.I asked if he is susceptible to

> infections and he said only sinusitis and pnemonia. I asked is he has a

> immune deficiency and he said no. If my son responds to the pnemonia shot he

> hgave him then he said we are done if not then we will talk about that

> then.I aksed is he can have his vaccinations and he said yes.And it is not

> genetic.Now I am more confused,LOL. It doesn't take much.I can't seem to

> find any info. on the web that a person other than a doctor can

> undserstand.If anyone knows of this condition or knows where I can get info

> on it please let me know it would be greatly appreciated! You can email me

> directly if that is ok at Angsabalmom@... Thanks in advance!

>

> >

> > sorry it is the http://www.primaryimmune.org The antibody deficiency can

> be a

> > symptom of several different immune deficiencies or a deficiency alone.

> It will

> > be up to your doctor to figure out which one your son fits into. My son

> we

> > believe has CVID but they often will not diagnose it until later in life.

> But he

> > has a multitude of both B and T cell issues that they put together into a

>

> > specific Common Variable immune Deficiency. I would get a second opinion

> of

> > another Immunologist to get another opinion so you can choose how to deal

> with

> > it for your son. The important thing is to try to protect his organs so

> that

> > they will last him a life time.

> >

> > BARBIE

> >

> > ________________________________

> > From: " AngSabAlMom@... " <AngSabAlMom@...>

>

> >

> > Sent: Sun, January 30, 2011 5:13:57 AM

> > Subject: Re: Selective Carbohydrate Antibody Deficiency

> >

> > I have been to the primaryimmune.org the link that you provided didn't

> seem

> > to work I read a lot and they sent me much information for which I am

> > grateful for. Thanks for your information and help it is greatly

> appreciated!

> > Sincerely,

> >

> > In a message dated 1/28/2011 2:04:55 P.M. Eastern Standard Time,

> > mother5590@... writes:

> >

> > the pneumonia vaccine is the Pneumovaccine and that is how they test the

> > antibodies. So the words I used would be correct. Have you gone to the

> > Immune

> > Deficiency Foundation website _http://www.primaryimmunedeficiency.org?_

> > (http://www.primaryimmunedeficiency.org/?) There is

> > LOTS of info there as well as there is info on this group if you got to

> > the

> > resources area.

> >

> > BARBIE

> >

> > ________________________________

> > From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

> > <_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

>

> > _ _ (mailto: )

> > Sent: Fri, January 28, 2011 4:20:24 AM

> > Subject: Re: Selective Carbohydrate Antibody Deficiency

> >

> > Hi Barbie,

> > I couldn't find anything online about his diagnoses. The doctor gave

> > him a pneumonia shot and a blood work order to test his blood in 2

> months.

> > Then he said if that doesn't' help he will try another shot and then Iv

> > therapy if needed. I am very new to this and trying to learn as much as I

>

> > can

> > and I am so thankful for these groups.

> >

> > In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

> > _mother5590@..._ (mailto:mother5590@...) writes:

> >

> > I think it may be Selective Polysaccharide Antibody Deficiency. I have

> > never

> > heard the other phrase. It is the test they do with either Pnuemovaccine

> > or

> > Prevnar to test for antibody response and whether they keep them. I would

>

> > encourage you to talk to him more to see what he suggests to do such as

> > using

> > antibiotics to prevent infection. Generally this is one of the areas of

> > deficiencies that may require some support.

> >

> > BARBIE

> >

> > ________________________________

> > From: " __AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

> > (mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) "

> > <__AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

> > (mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) >

>

> > __ _ (mailto:_ ) _

> > (mailto:_ _ (mailto: ) )

> > Sent: Mon, January 24, 2011 4:02:02 AM

> > Subject: Selective Carbohydrate Antibody Deficiency

> >

> > Hello Everyone,

> > I have a 15 year old son with learning disabilites who has had

> > chronic sinusitis, asthma, allergies, stomach pain, headaches, fatigue

> and

> > viruses since pre School age. He doesn't get sick to often in the summer

> > or

> > when on vacations from school. Which his school and his doctors think he

> > fakes being sick to get out of school. I had told them I think his immune

>

> > system is compromised which is why he is well when he is home and gets

> > sick

> > when he returns to school with all the germs and illness. Well I have

> > taken

> > him to many specialists and his pediatrician said all his test were

> > normal. I

> > took him to a Allergist/Immunologist out of Yale New Haven hospital in

> Ct.

> > he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

> > Antibody Deficiency. His IGG (14 subclasses) are pretty much non

> existent.

> > So

> > he isn't producing antibodies to fight off infections. I was unable to

> > find anything specific to Selective Carbohydrate Antibody Deficiency does

>

> > anyone else have this conditions? Any information would be greatly

> > appreciated.

> >

> > I am grateful for this group and look forward to corresponding with you

> > all.

> > Sincerely,

> > __Angsabalmom@..._ (mailto:_Angsabalmom@...) _

> > (mailto:_Angsabalmom@..._ (mailto:Angsabalmom@...) )

> >

February 7, 2011

Now, I am going to take a stab at this. But first, where are you located

and what training has your doctor had? It may be that he trained where

the terminology was different. According to Ursula's search the

definition IS that of selective antibody deficiency. This is why:

Many bacteria are surrounded by a polysaccharide capsule, which both

provides the antigens against which antibodies can act, the molecules that

largely determine how virulent and pathogenic the organism and protects

the main bacterial cell from the bodies defense systems. The carbohydrate

part of the bacteria is the polysaccharide capsule. Pneumovax and the

meningococcal vaccine are polysaccaride vaccines.

On the other hand, a conjugate vaccine is a protein attached to the

polysaccharide capsule to help it work better. DTaP and Hib are examples

of conjugate vaccines. One reason this was important to me, is that IgG1

builds antibodies against conjugate vaccines, and IgG2 builds antibodies

against polysaccharide vaccines. So my son, who is severely deficient in

IgG1 (as part of his CVID), doesn't form antibodies for Tetanus, for

example.

from:

http://www.immunedisease.com/patients-and-families/about-pi/types-of-pi/igg-subc\

lass-deficiency.html

<<While all the IgG subclasses contain antibodies, each subclass serves

somewhat different functions in protecting the body against infection. For

example, the IgG1 and IgG3 subclasses are rich in antibodies against

proteins such as the toxins produced by the diphtheria and tetanus

bacteria, as well as antibodies against viral proteins. In contrast,

antibodies against the polysaccharide (complex sugar) coating (capsule) of

certain disease-producing bacteria (e.g. the pneumococcus and Haemophilus

influenzae) are predominantly of the IgG2 type.>>

<<Clinical Presentation of Subclass Deficiency:

Recurrent ear infections, sinusitis, bronchitis and pneumonia are the most

frequently observed illnesses in patients with IgG subclass deficiencies.

Both males and females may be affected. Some patients will show an

increased frequency of infection beginning in their second year of life.

In other patients the onset of infections may occur later. Often a child

with IgG subclass deficiency will first come to the physician's attention

because of recurrent ear infections. Somewhat later in life, recurrent or

chronic sinusitis, bronchitis and/or pneumonia may make their appearance.

In general, the infections suffered by patients with selective IgG

subclass deficiencies are not as severe as those suffered by patients who

have combined deficiencies of IgG, IgA and IgM (for example X-linked

agammaglobulinemia or common variable immunodeficiency).>>

This is what we were talking about:

<<An additional subset of patients have normal immunoglobulin levels and

normal IgG subclasses, yet fail to produce protective antibody levels in

response to infections with Streptococcus pneumoniae or to vaccines

against this bacteria. These patients are thought to have a Specific

Antibody Deficiency (SAD) and are usually grouped along with patients with

IgG subclass deficiency.>>

I also found a reference to a group of patients with normal immunoglobulin

levels, but they do have Specific Antibody Deficiency--SAD (they don't

respond well to pneumovax). The number quoted in this textbook was 23% of

patients referred to an immunology center (not the general population!).

Maybe that is where he gets his numbers?

http://books.google.com/books?id=7-XAYMSbmeIC & pg=PA89 & lpg=PA89 & dq=specific+antib\

ody+deficiency+general+population & source=bl & ots=KjwOYAMR_e & sig=o8XLM9VgU0rZd0Pr0\

LTH9BUQi3U & hl=en & ei=y3VQTYuwOsHFgAf5qqEB & sa=X & oi=book_result & ct=result & resnum=5 & \

ved=0CDIQ6AEwBDgK#v=onepage & q=specific%20antibody%20deficiency%20general%20popul\

ation & f=false

If your son has IgG subclass deficiency with normal total IgG levels, and

responds to pneumovax, he won't be treated with IVIG. It doesn't mean

that he doesn't have IgG subclass deficiency! He just doesn't need IVIG.

Some kids with IgG subclass deficiency need rotating antibiotics, etc. If

he has SAD, he may need more agressive treatment. If he has IgG subclass

deficiency AND SAD, he may need IVIG; it is done on a case-by-case basis.

It sounds like the doctor was trying to avoid some education. Of course

this is genetic! I have milder IgG subclasses deficiency with borderline

titers and total IgG, my son has more severe CVID

Hope this helps some.

Mindy

mom of seven in Va.

> Ok the doctor just called and told me to google only Carbohydrate

Antibody

> Deficiency. And he said the what it mans is that bacteria has

> carbohydrates (sugars) in then and my son doesn't respond to them.And

that

> 1 in 100 people have this and his genes don't work on bacteria mucus is

carbohydrates.And it is a common syndrome.3-4 of his genes are not working

> right.And I can have it being his mom if I get sinusitis.I asked if he

is

> susceptible to infections and he said only sinusitis and pnemonia. I

asked

> is he has a immune deficiency and he said no. If my son responds to the

pnemonia shot he hgave him then he said we are done if not then we will

talk about that then.I aksed is he can have his vaccinations and he said

yes.And it is not genetic.Now I am more confused,LOL. It doesn't take

much.I can't seem to find any info. on the web that a person other than a

> doctor can undserstand.If anyone knows of this condition or knows where

I

> can get info on it please let me know it would be greatly appreciated!

You

> can email me directly if that is ok at Angsabalmom@... Thanks in

advance!

>

>> sorry it is the http://www.primaryimmune.org The antibody deficiency

can

>> be a

>> symptom of several different immune deficiencies or a deficiency alone.

It will

>> be up to your doctor to figure out which one your son fits into. My son

we

>> believe has CVID but they often will not diagnose it until later in

life. But he

>> has a multitude of both B and T cell issues that they put together into

a

>> specific Common Variable immune Deficiency. I would get a second

opinion

>> of

>> another Immunologist to get another opinion so you can choose how to

deal with

>> it for your son. The important thing is to try to protect his organs so

that

>> they will last him a life time.

>> BARBIE

>> ________________________________

>> From: " AngSabAlMom@... " <AngSabAlMom@...>

>>

>> Sent: Sun, January 30, 2011 5:13:57 AM

>> Subject: Re: Selective Carbohydrate Antibody Deficiency I have

been to the primaryimmune.org the link that you provided didn't seem

>> to work I read a lot and they sent me much information for which I am

grateful for. Thanks for your information and help it is greatly

appreciated!

>> Sincerely,

>>

>> In a message dated 1/28/2011 2:04:55 P.M. Eastern Standard Time,

mother5590@... writes:

>> the pneumonia vaccine is the Pneumovaccine and that is how they test

the

>> antibodies. So the words I used would be correct. Have you gone to the

Immune

>> Deficiency Foundation website _http://www.primaryimmunedeficiency.org?_

(http://www.primaryimmunedeficiency.org/?) There is

>> LOTS of info there as well as there is info on this group if you got

to

>> the

>> resources area.

>> BARBIE

>> ________________________________

>> From: " _AngSabAlMom@..._ (mailto:AngSabAlMom@...) "

>> <_AngSabAlMom@..._ (mailto:AngSabAlMom@...) >

>> _ _ (mailto: )

>> Sent: Fri, January 28, 2011 4:20:24 AM

>> Subject: Re: Selective Carbohydrate Antibody Deficiency Hi

Barbie,

>> I couldn't find anything online about his diagnoses. The doctor gave

him a pneumonia shot and a blood work order to test his blood in 2 months.

>> Then he said if that doesn't' help he will try another shot and then

Iv

>> therapy if needed. I am very new to this and trying to learn as much

as

>> I

>> can

>> and I am so thankful for these groups.

>> In a message dated 1/24/2011 1:52:35 P.M. Eastern Standard Time,

_mother5590@..._ (mailto:mother5590@...) writes:

>> I think it may be Selective Polysaccharide Antibody Deficiency. I have

never

>> heard the other phrase. It is the test they do with either

Pnuemovaccine

>> or

>> Prevnar to test for antibody response and whether they keep them. I

would

>> encourage you to talk to him more to see what he suggests to do such

as

>> using

>> antibiotics to prevent infection. Generally this is one of the areas

of

>> deficiencies that may require some support.

>> BARBIE

>> ________________________________

>> From: " __AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

>> (mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) "

>> <__AngSabAlMom@..._ (mailto:_AngSabAlMom@...) _

>> (mailto:_AngSabAlMom@..._ (mailto:AngSabAlMom@...) ) >

>> __ _ (mailto:_ ) _

(mailto:_ _ (mailto: ) ) Sent:

Mon, January 24, 2011 4:02:02 AM

>> Subject: Selective Carbohydrate Antibody Deficiency

>> Hello Everyone,

>> I have a 15 year old son with learning disabilites who has had chronic

sinusitis, asthma, allergies, stomach pain, headaches, fatigue and

>> viruses since pre School age. He doesn't get sick to often in the

summer

>> or

>> when on vacations from school. Which his school and his doctors think

he

>> fakes being sick to get out of school. I had told them I think his

immune

>> system is compromised which is why he is well when he is home and gets

sick

>> when he returns to school with all the germs and illness. Well I have

taken

>> him to many specialists and his pediatrician said all his test were

normal. I

>> took him to a Allergist/Immunologist out of Yale New Haven hospital in

Ct.

>> he took 12 tubes of blood and diagnosed him with Selective Carbohydrate

Antibody Deficiency. His IGG (14 subclasses) are pretty much non

existent.

>> So

>> he isn't producing antibodies to fight off infections. I was unable to

find anything specific to Selective Carbohydrate Antibody Deficiency does

>> anyone else have this conditions? Any information would be greatly

appreciated.

>> I am grateful for this group and look forward to corresponding with

you

>> all.

>> Sincerely,

>> __Angsabalmom@..._ (mailto:_Angsabalmom@...) _

>> (mailto:_Angsabalmom@..._ (mailto:Angsabalmom@...) )

>> [Non-text portions of this message have been removed]

>>

February 7, 2011

well done Mindy. I think this is a GREAT explanation. The interesting thing is

how much more info is available out there than 14 years ago when we began with

my son trying to get a diagnosis.

BARBIE

________________________________

From: " mindy@... " <mindy@...>

Sent: Mon, February 7, 2011 3:05:56 PM

Subject: Re: Re: Selective Carbohydrate Antibody Deficiency