Re: Selective Antibody Deficiency?

[Guest guest]

I'd seek a second opinion. He is at that age where the immune system is

still maturing and treatment might take a wait and see approach.

Maintenance antibiotics could help. Our oldest daughter (non-PID) had

similar issues and outgrew them. She has cruddy sinuses now (18 years old)

but that's it.

Remember IVIG is a blood product and not having to expose him to it would be

great. What part of the country are you in?

Ursula

mom to Macey (15,CVID)

On Sat, Jan 22, 2011 at 10:03 PM, amanda <amandaconstantin@...> wrote:

>

>

> We are waiting on the final set of labs to confirm this diagnosis for my

> son. 's response went down instead of up last time we checked. All of

> the strains were negative. My immunologist said if his lab work has not

> improved after him getting his last vaccine in October he wants to start

> IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> disagrees and thinks my son will outgrow all of his problems. The

> pediatrician thinks we should go to a larger children's hospital and get a

> second opinion. My son is only eighteen months old. He has never been

> hospitalized, but he stays with respiratory infections. He constantly is

> wheezing and being put on prednisolone to clear it up. He also gets a ton of

> ear infections that take over a month to clear up. Do you ladies think it

> would be worth seeking out a second opinion or would you just listen to the

> immunologist? I don't want to rush into treatmeant, but I also don't want to

> withhold something that could help him. Thanks in advance for any

> suggestions

>

>

> 18 months

>

>

>

[Guest guest]

I'd seek a second opinion. He is at that age where the immune system is

still maturing and treatment might take a wait and see approach.

Maintenance antibiotics could help. Our oldest daughter (non-PID) had

similar issues and outgrew them. She has cruddy sinuses now (18 years old)

but that's it.

Remember IVIG is a blood product and not having to expose him to it would be

great. What part of the country are you in?

Ursula

mom to Macey (15,CVID)

On Sat, Jan 22, 2011 at 10:03 PM, amanda <amandaconstantin@...> wrote:

>

>

> We are waiting on the final set of labs to confirm this diagnosis for my

> son. 's response went down instead of up last time we checked. All of

> the strains were negative. My immunologist said if his lab work has not

> improved after him getting his last vaccine in October he wants to start

> IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> disagrees and thinks my son will outgrow all of his problems. The

> pediatrician thinks we should go to a larger children's hospital and get a

> second opinion. My son is only eighteen months old. He has never been

> hospitalized, but he stays with respiratory infections. He constantly is

> wheezing and being put on prednisolone to clear it up. He also gets a ton of

> ear infections that take over a month to clear up. Do you ladies think it

> would be worth seeking out a second opinion or would you just listen to the

> immunologist? I don't want to rush into treatmeant, but I also don't want to

> withhold something that could help him. Thanks in advance for any

> suggestions

>

>

> 18 months

>

>

>

[Guest guest]

I agree. Go to a children hospital and get a second opinion. My daughter was

supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia. It

started from birth. They told me she will outgrow it but didn't. That being said

she now has scar tissue on her lungs from all the sickness. I wished we would

have gotten the IVIG allot sooner then we did. Just my own experience with it.

Life has been so much better on the IVIG. But Ursula is right. It is a blood

product. I hope you get some answers soon!

Byrd

http://www.caringbridge.org/visit/deanabyrd

________________________________________________________________________________\

___________________

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Sun, January 23, 2011 4:51:25 PM

Subject: Re: Selective Antibody Deficiency?

I'd seek a second opinion. He is at that age where the immune system is

still maturing and treatment might take a wait and see approach.

Maintenance antibiotics could help. Our oldest daughter (non-PID) had

similar issues and outgrew them. She has cruddy sinuses now (18 years old)

but that's it.

Remember IVIG is a blood product and not having to expose him to it would be

great. What part of the country are you in?

Ursula

mom to Macey (15,CVID)

On Sat, Jan 22, 2011 at 10:03 PM, amanda <amandaconstantin@...> wrote:

>

>

> We are waiting on the final set of labs to confirm this diagnosis for my

> son. 's response went down instead of up last time we checked. All of

> the strains were negative. My immunologist said if his lab work has not

> improved after him getting his last vaccine in October he wants to start

> IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> disagrees and thinks my son will outgrow all of his problems. The

> pediatrician thinks we should go to a larger children's hospital and get a

> second opinion. My son is only eighteen months old. He has never been

> hospitalized, but he stays with respiratory infections. He constantly is

> wheezing and being put on prednisolone to clear it up. He also gets a ton of

> ear infections that take over a month to clear up. Do you ladies think it

> would be worth seeking out a second opinion or would you just listen to the

> immunologist? I don't want to rush into treatmeant, but I also don't want to

> withhold something that could help him. Thanks in advance for any

> suggestions

>

>

> 18 months

>

>

>

[Guest guest]

I would get another opinion at the Childrens' Hospital. It is s LOT of work but

worth it.

But I would also say that a child that is requiring LOTS of Prednisone and

has immune issues of not building or keeping antibodies is a candidate for

treatment. The Pred is not healthy for him either and I personally believe more

than we give credit it for adverse life effects. I know there are LOTS of

Allergic kids that are on Pred and if they do not have immune issues there would

be NO reason to use Gamma. But...... if the two issues are together I err on the

side of treating so that the lungs and guts are spared damage since they need to

be used for a lifetime. A few years on Gamma and then off for retesting in my

opinion cannot hurt. I know it is a blood product and there are risks but I

think the benefits outweigh the risks. I believe my son Lucas (15) would have

faired better if we had started earlier. I believe many of his emotional issues

are related to being so sick all the time and not being to interact or develop

appropriately for his age. He is still struggling. I wish I had the article but

I read somewhere that there is a belief that kids with immune issues carry

bacteria in their brains that are a low level infection. Based on that it can

cause some of the emotional struggles. So the question was for me is to provide

an avenue to be as win win as possible.

BARBIE

________________________________

From: Mrs. Byrd <kitkat32308@...>

Sent: Sun, January 23, 2011 1:57:18 PM

Subject: Re: Selective Antibody Deficiency?

I agree. Go to a children hospital and get a second opinion. My daughter was

supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia. It

started from birth. They told me she will outgrow it but didn't. That being said

she now has scar tissue on her lungs from all the sickness. I wished we would

have gotten the IVIG allot sooner then we did. Just my own experience with it.

Life has been so much better on the IVIG. But Ursula is right. It is a blood

product. I hope you get some answers soon!

Byrd

http://www.caringbridge.org/visit/deanabyrd

__________________________________________________________

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Sun, January 23, 2011 4:51:25 PM

Subject: Re: Selective Antibody Deficiency?

I'd seek a second opinion. He is at that age where the immune system is

still maturing and treatment might take a wait and see approach.

Maintenance antibiotics could help. Our oldest daughter (non-PID) had

similar issues and outgrew them. She has cruddy sinuses now (18 years old)

but that's it.

Remember IVIG is a blood product and not having to expose him to it would be

great. What part of the country are you in?

Ursula

mom to Macey (15,CVID)

On Sat, Jan 22, 2011 at 10:03 PM, amanda <amandaconstantin@...> wrote:

>

>

> We are waiting on the final set of labs to confirm this diagnosis for my

> son. 's response went down instead of up last time we checked. All of

> the strains were negative. My immunologist said if his lab work has not

> improved after him getting his last vaccine in October he wants to start

> IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> disagrees and thinks my son will outgrow all of his problems. The

> pediatrician thinks we should go to a larger children's hospital and get a

> second opinion. My son is only eighteen months old. He has never been

> hospitalized, but he stays with respiratory infections. He constantly is

> wheezing and being put on prednisolone to clear it up. He also gets a ton of

> ear infections that take over a month to clear up. Do you ladies think it

> would be worth seeking out a second opinion or would you just listen to the

> immunologist? I don't want to rush into treatmeant, but I also don't want to

> withhold something that could help him. Thanks in advance for any

> suggestions

>

>

> 18 months

>

>

>

[Guest guest]

We tried doing the maintenance meds, but my son continued to get sick while on

them. He had a couple ear infections and sinus infections. So they would put him

on a stronger antibiotic to clear it up. My pediatrician felt they weren't

working and was worried about him becoming resistant to them since he was on so

many. My immunologist basically said if we decide against IVIG there is nothing

else he can do. He thinks with the length of his infections and the amount of

antibiotics we have to use to clear them up that we would greatly benefit from

the IVIG. My son was only well for three weeks of last year. My pediatrician

thinks we.are rushing into treatment. We live in Baton Rouge, so we could easily

travel to New Orleans to the Children's hospital there. I am willing to travel

anywhere to get a second opinion. I really like my immunologist and wouldn't

even question it if my pediatrician was on board.

Thanks,

18 months

Sent from my Verizon Wireless Phone

----- Reply message -----

From: " Barbara Jimenez " <mother5590@...>

Date: Sun, Jan 23, 2011 4:12 pm

Subject: Selective Antibody Deficiency?

< >

I would get another opinion at the Childrens' Hospital. It is s LOT of work but

worth it.

But I would also say that a child that is requiring LOTS of Prednisone and

has immune issues of not building or keeping antibodies is a candidate for

treatment. The Pred is not healthy for him either and I personally believe more

than we give credit it for adverse life effects. I know there are LOTS of

Allergic kids that are on Pred and if they do not have immune issues there would

be NO reason to use Gamma. But...... if the two issues are together I err on the

side of treating so that the lungs and guts are spared damage since they need to

be used for a lifetime. A few years on Gamma and then off for retesting in my

opinion cannot hurt. I know it is a blood product and there are risks but I

think the benefits outweigh the risks. I believe my son Lucas (15) would have

faired better if we had started earlier. I believe many of his emotional issues

are related to being so sick all the time and not being to interact or develop

appropriately for his age. He is still struggling. I wish I had the article but

I read somewhere that there is a belief that kids with immune issues carry

bacteria in their brains that are a low level infection. Based on that it can

cause some of the emotional struggles. So the question was for me is to provide

an avenue to be as win win as possible.

BARBIE

________________________________

From: Mrs. Byrd <kitkat32308@...>

Sent: Sun, January 23, 2011 1:57:18 PM

Subject: Re: Selective Antibody Deficiency?

I agree. Go to a children hospital and get a second opinion. My daughter was

supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia. It

started from birth. They told me she will outgrow it but didn't. That being said

she now has scar tissue on her lungs from all the sickness. I wished we would

have gotten the IVIG allot sooner then we did. Just my own experience with it.

Life has been so much better on the IVIG. But Ursula is right. It is a blood

product. I hope you get some answers soon!

Byrd

http://www.caringbridge.org/visit/deanabyrd

__________________________________________________________

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Sun, January 23, 2011 4:51:25 PM

Subject: Re: Selective Antibody Deficiency?

I'd seek a second opinion. He is at that age where the immune system is

still maturing and treatment might take a wait and see approach.

Maintenance antibiotics could help. Our oldest daughter (non-PID) had

similar issues and outgrew them. She has cruddy sinuses now (18 years old)

but that's it.

Remember IVIG is a blood product and not having to expose him to it would be

great. What part of the country are you in?

Ursula

mom to Macey (15,CVID)

On Sat, Jan 22, 2011 at 10:03 PM, amanda <amandaconstantin@...> wrote:

>

>

> We are waiting on the final set of labs to confirm this diagnosis for my

> son. 's response went down instead of up last time we checked. All of

> the strains were negative. My immunologist said if his lab work has not

> improved after him getting his last vaccine in October he wants to start

> IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> disagrees and thinks my son will outgrow all of his problems. The

> pediatrician thinks we should go to a larger children's hospital and get a

> second opinion. My son is only eighteen months old. He has never been

> hospitalized, but he stays with respiratory infections. He constantly is

> wheezing and being put on prednisolone to clear it up. He also gets a ton of

> ear infections that take over a month to clear up. Do you ladies think it

> would be worth seeking out a second opinion or would you just listen to the

> immunologist? I don't want to rush into treatmeant, but I also don't want to

> withhold something that could help him. Thanks in advance for any

> suggestions

>

>

> 18 months

>

>

>

[Guest guest]

I guess I would go with the immunologist since he is the EXPERT ! AND..... then

I would make sure I got a 2nd opinion in New Orleans or you could even go to

Tulsa to see a Great Immunologist there. Let me know if you want the name. It is

a REALLY tough choice to make. I would encourage you to expect to remain on it

until he is about 3 and then they could take him off for 100days and reevaluate

it. BARBIE

________________________________

From: " amandaconstantin@... " <amandaconstantin@...>

Sent: Sun, January 23, 2011 2:36:37 PM

Subject: Re: Selective Antibody Deficiency?

We tried doing the maintenance meds, but my son continued to get sick while on

them. He had a couple ear infections and sinus infections. So they would put him

on a stronger antibiotic to clear it up. My pediatrician felt they weren't

working and was worried about him becoming resistant to them since he was on so

many. My immunologist basically said if we decide against IVIG there is nothing

else he can do. He thinks with the length of his infections and the amount of

antibiotics we have to use to clear them up that we would greatly benefit from

the IVIG. My son was only well for three weeks of last year. My pediatrician

thinks we.are rushing into treatment. We live in Baton Rouge, so we could easily

travel to New Orleans to the Children's hospital there. I am willing to travel

anywhere to get a second opinion. I really like my immunologist and wouldn't

even question it if my pediatrician was on board.

Thanks,

18 months

Sent from my Verizon Wireless Phone

----- Reply message -----

From: " Barbara Jimenez " <mother5590@...>

Date: Sun, Jan 23, 2011 4:12 pm

Subject: Selective Antibody Deficiency?

< >

I would get another opinion at the Childrens' Hospital. It is s LOT of work but

worth it.

But I would also say that a child that is requiring LOTS of Prednisone and

has immune issues of not building or keeping antibodies is a candidate for

treatment. The Pred is not healthy for him either and I personally believe more

than we give credit it for adverse life effects. I know there are LOTS of

Allergic kids that are on Pred and if they do not have immune issues there would

be NO reason to use Gamma. But...... if the two issues are together I err on the

side of treating so that the lungs and guts are spared damage since they need to

be used for a lifetime. A few years on Gamma and then off for retesting in my

opinion cannot hurt. I know it is a blood product and there are risks but I

think the benefits outweigh the risks. I believe my son Lucas (15) would have

faired better if we had started earlier. I believe many of his emotional issues

are related to being so sick all the time and not being to interact or develop

appropriately for his age. He is still struggling. I wish I had the article but

I read somewhere that there is a belief that kids with immune issues carry

bacteria in their brains that are a low level infection. Based on that it can

cause some of the emotional struggles. So the question was for me is to provide

an avenue to be as win win as possible.

BARBIE

________________________________

From: Mrs. Byrd <kitkat32308@...>

Sent: Sun, January 23, 2011 1:57:18 PM

Subject: Re: Selective Antibody Deficiency?

I agree. Go to a children hospital and get a second opinion. My daughter was

supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia. It

started from birth. They told me she will outgrow it but didn't. That being said

she now has scar tissue on her lungs from all the sickness. I wished we would

have gotten the IVIG allot sooner then we did. Just my own experience with it.

Life has been so much better on the IVIG. But Ursula is right. It is a blood

product. I hope you get some answers soon!

Byrd

http://www.caringbridge.org/visit/deanabyrd

__________________________________________________________

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Sun, January 23, 2011 4:51:25 PM

Subject: Re: Selective Antibody Deficiency?

I'd seek a second opinion. He is at that age where the immune system is

still maturing and treatment might take a wait and see approach.

Maintenance antibiotics could help. Our oldest daughter (non-PID) had

similar issues and outgrew them. She has cruddy sinuses now (18 years old)

but that's it.

Remember IVIG is a blood product and not having to expose him to it would be

great. What part of the country are you in?

Ursula

mom to Macey (15,CVID)

On Sat, Jan 22, 2011 at 10:03 PM, amanda <amandaconstantin@...> wrote:

>

>

> We are waiting on the final set of labs to confirm this diagnosis for my

> son. 's response went down instead of up last time we checked. All of

> the strains were negative. My immunologist said if his lab work has not

> improved after him getting his last vaccine in October he wants to start

> IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> disagrees and thinks my son will outgrow all of his problems. The

> pediatrician thinks we should go to a larger children's hospital and get a

> second opinion. My son is only eighteen months old. He has never been

> hospitalized, but he stays with respiratory infections. He constantly is

> wheezing and being put on prednisolone to clear it up. He also gets a ton of

> ear infections that take over a month to clear up. Do you ladies think it

> would be worth seeking out a second opinion or would you just listen to the

> immunologist? I don't want to rush into treatmeant, but I also don't want to

> withhold something that could help him. Thanks in advance for any

> suggestions

>

>

> 18 months

>

>

>

[Guest guest]

I guess I would go with the immunologist since he is the EXPERT ! AND..... then

I would make sure I got a 2nd opinion in New Orleans or you could even go to

Tulsa to see a Great Immunologist there. Let me know if you want the name. It is

a REALLY tough choice to make. I would encourage you to expect to remain on it

until he is about 3 and then they could take him off for 100days and reevaluate

it. BARBIE

________________________________

From: " amandaconstantin@... " <amandaconstantin@...>

Sent: Sun, January 23, 2011 2:36:37 PM

Subject: Re: Selective Antibody Deficiency?

We tried doing the maintenance meds, but my son continued to get sick while on

them. He had a couple ear infections and sinus infections. So they would put him

on a stronger antibiotic to clear it up. My pediatrician felt they weren't

working and was worried about him becoming resistant to them since he was on so

many. My immunologist basically said if we decide against IVIG there is nothing

else he can do. He thinks with the length of his infections and the amount of

antibiotics we have to use to clear them up that we would greatly benefit from

the IVIG. My son was only well for three weeks of last year. My pediatrician

thinks we.are rushing into treatment. We live in Baton Rouge, so we could easily

travel to New Orleans to the Children's hospital there. I am willing to travel

anywhere to get a second opinion. I really like my immunologist and wouldn't

even question it if my pediatrician was on board.

Thanks,

18 months

Sent from my Verizon Wireless Phone

----- Reply message -----

From: " Barbara Jimenez " <mother5590@...>

Date: Sun, Jan 23, 2011 4:12 pm

Subject: Selective Antibody Deficiency?

< >

I would get another opinion at the Childrens' Hospital. It is s LOT of work but

worth it.

But I would also say that a child that is requiring LOTS of Prednisone and

has immune issues of not building or keeping antibodies is a candidate for

treatment. The Pred is not healthy for him either and I personally believe more

than we give credit it for adverse life effects. I know there are LOTS of

Allergic kids that are on Pred and if they do not have immune issues there would

be NO reason to use Gamma. But...... if the two issues are together I err on the

side of treating so that the lungs and guts are spared damage since they need to

be used for a lifetime. A few years on Gamma and then off for retesting in my

opinion cannot hurt. I know it is a blood product and there are risks but I

think the benefits outweigh the risks. I believe my son Lucas (15) would have

faired better if we had started earlier. I believe many of his emotional issues

are related to being so sick all the time and not being to interact or develop

appropriately for his age. He is still struggling. I wish I had the article but

I read somewhere that there is a belief that kids with immune issues carry

bacteria in their brains that are a low level infection. Based on that it can

cause some of the emotional struggles. So the question was for me is to provide

an avenue to be as win win as possible.

BARBIE

________________________________

From: Mrs. Byrd <kitkat32308@...>

Sent: Sun, January 23, 2011 1:57:18 PM

Subject: Re: Selective Antibody Deficiency?

I agree. Go to a children hospital and get a second opinion. My daughter was

supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia. It

started from birth. They told me she will outgrow it but didn't. That being said

she now has scar tissue on her lungs from all the sickness. I wished we would

have gotten the IVIG allot sooner then we did. Just my own experience with it.

Life has been so much better on the IVIG. But Ursula is right. It is a blood

product. I hope you get some answers soon!

Byrd

http://www.caringbridge.org/visit/deanabyrd

__________________________________________________________

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Sun, January 23, 2011 4:51:25 PM

Subject: Re: Selective Antibody Deficiency?

I'd seek a second opinion. He is at that age where the immune system is

still maturing and treatment might take a wait and see approach.

Maintenance antibiotics could help. Our oldest daughter (non-PID) had

similar issues and outgrew them. She has cruddy sinuses now (18 years old)

but that's it.

Remember IVIG is a blood product and not having to expose him to it would be

great. What part of the country are you in?

Ursula

mom to Macey (15,CVID)

On Sat, Jan 22, 2011 at 10:03 PM, amanda <amandaconstantin@...> wrote:

>

>

> We are waiting on the final set of labs to confirm this diagnosis for my

> son. 's response went down instead of up last time we checked. All of

> the strains were negative. My immunologist said if his lab work has not

> improved after him getting his last vaccine in October he wants to start

> IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> disagrees and thinks my son will outgrow all of his problems. The

> pediatrician thinks we should go to a larger children's hospital and get a

> second opinion. My son is only eighteen months old. He has never been

> hospitalized, but he stays with respiratory infections. He constantly is

> wheezing and being put on prednisolone to clear it up. He also gets a ton of

> ear infections that take over a month to clear up. Do you ladies think it

> would be worth seeking out a second opinion or would you just listen to the

> immunologist? I don't want to rush into treatmeant, but I also don't want to

> withhold something that could help him. Thanks in advance for any

> suggestions

>

>

> 18 months

>

>

>

[Guest guest]

Always seek a second opinion.

Pamela

From: [mailto: ] On Behalf Of

amanda

Sent: Saturday, January 22, 2011 10:04 PM

Subject: Selective Antibody Deficiency?

We are waiting on the final set of labs to confirm this diagnosis for my

son. 's response went down instead of up last time we checked. All of

the strains were negative. My immunologist said if his lab work has not

improved after him getting his last vaccine in October he wants to start

IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

disagrees and thinks my son will outgrow all of his problems. The

pediatrician thinks we should go to a larger children's hospital and get a

second opinion. My son is only eighteen months old. He has never been

hospitalized, but he stays with respiratory infections. He constantly is

wheezing and being put on prednisolone to clear it up. He also gets a ton of

ear infections that take over a month to clear up. Do you ladies think it

would be worth seeking out a second opinion or would you just listen to the

immunologist? I don't want to rush into treatmeant, but I also don't want to

withhold something that could help him. Thanks in advance for any

suggestions

18 months

[Guest guest]

Always seek a second opinion.

Pamela

From: [mailto: ] On Behalf Of

amanda

Sent: Saturday, January 22, 2011 10:04 PM

Subject: Selective Antibody Deficiency?

We are waiting on the final set of labs to confirm this diagnosis for my

son. 's response went down instead of up last time we checked. All of

the strains were negative. My immunologist said if his lab work has not

improved after him getting his last vaccine in October he wants to start

IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

disagrees and thinks my son will outgrow all of his problems. The

pediatrician thinks we should go to a larger children's hospital and get a

second opinion. My son is only eighteen months old. He has never been

hospitalized, but he stays with respiratory infections. He constantly is

wheezing and being put on prednisolone to clear it up. He also gets a ton of

ear infections that take over a month to clear up. Do you ladies think it

would be worth seeking out a second opinion or would you just listen to the

immunologist? I don't want to rush into treatmeant, but I also don't want to

withhold something that could help him. Thanks in advance for any

suggestions

18 months

[Guest guest]

I know of one in Little Rock also if that isn't too much of a stretch. He

lectures for the IDF and was also on staff at Duke for a while.

Remember too that the Prednisone can bring on immune issues also. A

secondary immune deficiency of sorts. Also if possible you might consider

testing for immotile cilia. Any drainage from the ear might be cultured for

a sensitivity test to make sure the right antibiotic is onboard.

Sinuses in an 18 month old are very limited but what is developed so far is

close to the brain and can be scary. Macey had a CT scan at 2 that showed

infection throughout but mostly in the ethmoid which is close to the brain.

We went directly from Radiology to the PICU to have a PICC line placed and

she started antibiotics that way. Three weeks of those bought her about 6

good months of health. Then she had her blood tests (she was almost 3) and

they came back dysfunctional. Different than deficient it showed that her

system, no matter how much was there, could not develop or replenish

properly. Since then her father and grandmother have been diagnosed. So at

this point they believe it is inherited.

Is there any other family with any type of PID or autoimmune diagnosed?

Ursula

mom to Macey (15,CVID)

On Sun, Jan 23, 2011 at 5:36 PM, amandaconstantin@... <

amandaconstantin@...> wrote:

>

>

> We tried doing the maintenance meds, but my son continued to get sick while

> on them. He had a couple ear infections and sinus infections. So they would

> put him on a stronger antibiotic to clear it up. My pediatrician felt they

> weren't working and was worried about him becoming resistant to them since

> he was on so many. My immunologist basically said if we decide against IVIG

> there is nothing else he can do. He thinks with the length of his infections

> and the amount of antibiotics we have to use to clear them up that we would

> greatly benefit from the IVIG. My son was only well for three weeks of last

> year. My pediatrician thinks we.are rushing into treatment. We live in Baton

> Rouge, so we could easily travel to New Orleans to the Children's hospital

> there. I am willing to travel anywhere to get a second opinion. I really

> like my immunologist and wouldn't even question it if my pediatrician was on

> board.

> Thanks,

>

> 18 months

> Sent from my Verizon Wireless Phone

>

> ----- Reply message -----

> From: " Barbara Jimenez " <mother5590@... <mother5590%40>>

> Date: Sun, Jan 23, 2011 4:12 pm

> Subject: Selective Antibody Deficiency?

> < <%40>>

>

>

> I would get another opinion at the Childrens' Hospital. It is s LOT of work

> but

> worth it.

>

> But I would also say that a child that is requiring LOTS of Prednisone and

> has immune issues of not building or keeping antibodies is a candidate for

> treatment. The Pred is not healthy for him either and I personally believe

> more

> than we give credit it for adverse life effects. I know there are LOTS of

> Allergic kids that are on Pred and if they do not have immune issues there

> would

> be NO reason to use Gamma. But...... if the two issues are together I err

> on the

> side of treating so that the lungs and guts are spared damage since they

> need to

> be used for a lifetime. A few years on Gamma and then off for retesting in

> my

> opinion cannot hurt. I know it is a blood product and there are risks but I

>

> think the benefits outweigh the risks. I believe my son Lucas (15) would

> have

> faired better if we had started earlier. I believe many of his emotional

> issues

> are related to being so sick all the time and not being to interact or

> develop

> appropriately for his age. He is still struggling. I wish I had the article

> but

> I read somewhere that there is a belief that kids with immune issues carry

> bacteria in their brains that are a low level infection. Based on that it

> can

> cause some of the emotional struggles. So the question was for me is to

> provide

> an avenue to be as win win as possible.

> BARBIE

>

> ________________________________

> From: Mrs. Byrd <kitkat32308@... <kitkat32308%40>>

> <%40>

> Sent: Sun, January 23, 2011 1:57:18 PM

> Subject: Re: Selective Antibody Deficiency?

>

> I agree. Go to a children hospital and get a second opinion. My daughter

> was

> supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia.

> It

> started from birth. They told me she will outgrow it but didn't. That being

> said

>

> she now has scar tissue on her lungs from all the sickness. I wished we

> would

> have gotten the IVIG allot sooner then we did. Just my own experience with

> it.

> Life has been so much better on the IVIG. But Ursula is right. It is a

> blood

> product. I hope you get some answers soon!

>

> Byrd

>

> http://www.caringbridge.org/visit/deanabyrd

>

> __________________________________________________________

>

> ________________________________

> From: Ursula Holleman <uahollem@... <uahollem%40gmail.com>>

> <%40>

> Sent: Sun, January 23, 2011 4:51:25 PM

> Subject: Re: Selective Antibody Deficiency?

>

> I'd seek a second opinion. He is at that age where the immune system is

> still maturing and treatment might take a wait and see approach.

> Maintenance antibiotics could help. Our oldest daughter (non-PID) had

> similar issues and outgrew them. She has cruddy sinuses now (18 years old)

> but that's it.

>

> Remember IVIG is a blood product and not having to expose him to it would

> be

> great. What part of the country are you in?

>

> Ursula

> mom to Macey (15,CVID)

>

> On Sat, Jan 22, 2011 at 10:03 PM, amanda

<amandaconstantin@...<amandaconstantin%40>>

> wrote:

>

> >

> >

> > We are waiting on the final set of labs to confirm this diagnosis for my

> > son. 's response went down instead of up last time we checked. All

> of

> > the strains were negative. My immunologist said if his lab work has not

> > improved after him getting his last vaccine in October he wants to start

> > IVIG. His IgG is also low, but has slowly been increasing. My

> pediatrician

> > disagrees and thinks my son will outgrow all of his problems. The

> > pediatrician thinks we should go to a larger children's hospital and get

> a

> > second opinion. My son is only eighteen months old. He has never been

> > hospitalized, but he stays with respiratory infections. He constantly is

> > wheezing and being put on prednisolone to clear it up. He also gets a ton

> of

> > ear infections that take over a month to clear up. Do you ladies think it

> > would be worth seeking out a second opinion or would you just listen to

> the

> > immunologist? I don't want to rush into treatmeant, but I also don't want

> to

> > withhold something that could help him. Thanks in advance for any

> > suggestions

> >

> >

> > 18 months

> >

> >

> >

>

>

[Guest guest]

I know of one in Little Rock also if that isn't too much of a stretch. He

lectures for the IDF and was also on staff at Duke for a while.

Remember too that the Prednisone can bring on immune issues also. A

secondary immune deficiency of sorts. Also if possible you might consider

testing for immotile cilia. Any drainage from the ear might be cultured for

a sensitivity test to make sure the right antibiotic is onboard.

Sinuses in an 18 month old are very limited but what is developed so far is

close to the brain and can be scary. Macey had a CT scan at 2 that showed

infection throughout but mostly in the ethmoid which is close to the brain.

We went directly from Radiology to the PICU to have a PICC line placed and

she started antibiotics that way. Three weeks of those bought her about 6

good months of health. Then she had her blood tests (she was almost 3) and

they came back dysfunctional. Different than deficient it showed that her

system, no matter how much was there, could not develop or replenish

properly. Since then her father and grandmother have been diagnosed. So at

this point they believe it is inherited.

Is there any other family with any type of PID or autoimmune diagnosed?

Ursula

mom to Macey (15,CVID)

On Sun, Jan 23, 2011 at 5:36 PM, amandaconstantin@... <

amandaconstantin@...> wrote:

>

>

> We tried doing the maintenance meds, but my son continued to get sick while

> on them. He had a couple ear infections and sinus infections. So they would

> put him on a stronger antibiotic to clear it up. My pediatrician felt they

> weren't working and was worried about him becoming resistant to them since

> he was on so many. My immunologist basically said if we decide against IVIG

> there is nothing else he can do. He thinks with the length of his infections

> and the amount of antibiotics we have to use to clear them up that we would

> greatly benefit from the IVIG. My son was only well for three weeks of last

> year. My pediatrician thinks we.are rushing into treatment. We live in Baton

> Rouge, so we could easily travel to New Orleans to the Children's hospital

> there. I am willing to travel anywhere to get a second opinion. I really

> like my immunologist and wouldn't even question it if my pediatrician was on

> board.

> Thanks,

>

> 18 months

> Sent from my Verizon Wireless Phone

>

> ----- Reply message -----

> From: " Barbara Jimenez " <mother5590@... <mother5590%40>>

> Date: Sun, Jan 23, 2011 4:12 pm

> Subject: Selective Antibody Deficiency?

> < <%40>>

>

>

> I would get another opinion at the Childrens' Hospital. It is s LOT of work

> but

> worth it.

>

> But I would also say that a child that is requiring LOTS of Prednisone and

> has immune issues of not building or keeping antibodies is a candidate for

> treatment. The Pred is not healthy for him either and I personally believe

> more

> than we give credit it for adverse life effects. I know there are LOTS of

> Allergic kids that are on Pred and if they do not have immune issues there

> would

> be NO reason to use Gamma. But...... if the two issues are together I err

> on the

> side of treating so that the lungs and guts are spared damage since they

> need to

> be used for a lifetime. A few years on Gamma and then off for retesting in

> my

> opinion cannot hurt. I know it is a blood product and there are risks but I

>

> think the benefits outweigh the risks. I believe my son Lucas (15) would

> have

> faired better if we had started earlier. I believe many of his emotional

> issues

> are related to being so sick all the time and not being to interact or

> develop

> appropriately for his age. He is still struggling. I wish I had the article

> but

> I read somewhere that there is a belief that kids with immune issues carry

> bacteria in their brains that are a low level infection. Based on that it

> can

> cause some of the emotional struggles. So the question was for me is to

> provide

> an avenue to be as win win as possible.

> BARBIE

>

> ________________________________

> From: Mrs. Byrd <kitkat32308@... <kitkat32308%40>>

> <%40>

> Sent: Sun, January 23, 2011 1:57:18 PM

> Subject: Re: Selective Antibody Deficiency?

>

> I agree. Go to a children hospital and get a second opinion. My daughter

> was

> supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia.

> It

> started from birth. They told me she will outgrow it but didn't. That being

> said

>

> she now has scar tissue on her lungs from all the sickness. I wished we

> would

> have gotten the IVIG allot sooner then we did. Just my own experience with

> it.

> Life has been so much better on the IVIG. But Ursula is right. It is a

> blood

> product. I hope you get some answers soon!

>

> Byrd

>

> http://www.caringbridge.org/visit/deanabyrd

>

> __________________________________________________________

>

> ________________________________

> From: Ursula Holleman <uahollem@... <uahollem%40gmail.com>>

> <%40>

> Sent: Sun, January 23, 2011 4:51:25 PM

> Subject: Re: Selective Antibody Deficiency?

>

> I'd seek a second opinion. He is at that age where the immune system is

> still maturing and treatment might take a wait and see approach.

> Maintenance antibiotics could help. Our oldest daughter (non-PID) had

> similar issues and outgrew them. She has cruddy sinuses now (18 years old)

> but that's it.

>

> Remember IVIG is a blood product and not having to expose him to it would

> be

> great. What part of the country are you in?

>

> Ursula

> mom to Macey (15,CVID)

>

> On Sat, Jan 22, 2011 at 10:03 PM, amanda

<amandaconstantin@...<amandaconstantin%40>>

> wrote:

>

> >

> >

> > We are waiting on the final set of labs to confirm this diagnosis for my

> > son. 's response went down instead of up last time we checked. All

> of

> > the strains were negative. My immunologist said if his lab work has not

> > improved after him getting his last vaccine in October he wants to start

> > IVIG. His IgG is also low, but has slowly been increasing. My

> pediatrician

> > disagrees and thinks my son will outgrow all of his problems. The

> > pediatrician thinks we should go to a larger children's hospital and get

> a

> > second opinion. My son is only eighteen months old. He has never been

> > hospitalized, but he stays with respiratory infections. He constantly is

> > wheezing and being put on prednisolone to clear it up. He also gets a ton

> of

> > ear infections that take over a month to clear up. Do you ladies think it

> > would be worth seeking out a second opinion or would you just listen to

> the

> > immunologist? I don't want to rush into treatmeant, but I also don't want

> to

> > withhold something that could help him. Thanks in advance for any

> > suggestions

> >

> >

> > 18 months

> >

> >

> >

>

>

[Guest guest]

When Lucas was 2 we had a similar experience. We went to Mexico for a vacation

and while we were there he got sick. He had a temp of 103-105 for weeks. He had

been through 9 courses of antibiotics and still was sick. I finally got a direct

admit to the Children's Hospital in Seattle because they had turned us away in

the

ER 2x saying he had a virus. ( we live 90miles N) After we were in the hospital

for about a week on IVs they were going to send up home(still had the fever)

because they could not find a source. I kept telling them it was sinus but they

said it was not possible in a 2 year old. He did have a chronic ear infection

and they thought that was the problem. An hour before we were being discharged

Dr. an Immunologist at UW came back from vacation and within an

hour we were in Surgery and then they stared IV antibiotics with a PIC for 6

weeks. They said his Sinuses were FULL and on the brain with cultured Strep. I

have a special place in my heart for Dr. because he LISTENED to my

concerns but I could not get the ENTs or other Residents to even take it all

seriously. I am an RN so it was even MORE frustrating.

BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Sun, January 23, 2011 6:42:22 PM

Subject: Re: Selective Antibody Deficiency?

I know of one in Little Rock also if that isn't too much of a stretch. He

lectures for the IDF and was also on staff at Duke for a while.

Remember too that the Prednisone can bring on immune issues also. A

secondary immune deficiency of sorts. Also if possible you might consider

testing for immotile cilia. Any drainage from the ear might be cultured for

a sensitivity test to make sure the right antibiotic is onboard.

Sinuses in an 18 month old are very limited but what is developed so far is

close to the brain and can be scary. Macey had a CT scan at 2 that showed

infection throughout but mostly in the ethmoid which is close to the brain.

We went directly from Radiology to the PICU to have a PICC line placed and

she started antibiotics that way. Three weeks of those bought her about 6

good months of health. Then she had her blood tests (she was almost 3) and

they came back dysfunctional. Different than deficient it showed that her

system, no matter how much was there, could not develop or replenish

properly. Since then her father and grandmother have been diagnosed. So at

this point they believe it is inherited.

Is there any other family with any type of PID or autoimmune diagnosed?

Ursula

mom to Macey (15,CVID)

On Sun, Jan 23, 2011 at 5:36 PM, amandaconstantin@... <

amandaconstantin@...> wrote:

>

>

> We tried doing the maintenance meds, but my son continued to get sick while

> on them. He had a couple ear infections and sinus infections. So they would

> put him on a stronger antibiotic to clear it up. My pediatrician felt they

> weren't working and was worried about him becoming resistant to them since

> he was on so many. My immunologist basically said if we decide against IVIG

> there is nothing else he can do. He thinks with the length of his infections

> and the amount of antibiotics we have to use to clear them up that we would

> greatly benefit from the IVIG. My son was only well for three weeks of last

> year. My pediatrician thinks we.are rushing into treatment. We live in Baton

> Rouge, so we could easily travel to New Orleans to the Children's hospital

> there. I am willing to travel anywhere to get a second opinion. I really

> like my immunologist and wouldn't even question it if my pediatrician was on

> board.

> Thanks,

>

> 18 months

> Sent from my Verizon Wireless Phone

>

> ----- Reply message -----

> From: " Barbara Jimenez " <mother5590@... <mother5590%40>>

> Date: Sun, Jan 23, 2011 4:12 pm

> Subject: Selective Antibody Deficiency?

> < <%40>>

>

>

> I would get another opinion at the Childrens' Hospital. It is s LOT of work

> but

> worth it.

>

> But I would also say that a child that is requiring LOTS of Prednisone and

> has immune issues of not building or keeping antibodies is a candidate for

> treatment. The Pred is not healthy for him either and I personally believe

> more

> than we give credit it for adverse life effects. I know there are LOTS of

> Allergic kids that are on Pred and if they do not have immune issues there

> would

> be NO reason to use Gamma. But...... if the two issues are together I err

> on the

> side of treating so that the lungs and guts are spared damage since they

> need to

> be used for a lifetime. A few years on Gamma and then off for retesting in

> my

> opinion cannot hurt. I know it is a blood product and there are risks but I

>

> think the benefits outweigh the risks. I believe my son Lucas (15) would

> have

> faired better if we had started earlier. I believe many of his emotional

> issues

> are related to being so sick all the time and not being to interact or

> develop

> appropriately for his age. He is still struggling. I wish I had the article

> but

> I read somewhere that there is a belief that kids with immune issues carry

> bacteria in their brains that are a low level infection. Based on that it

> can

> cause some of the emotional struggles. So the question was for me is to

> provide

> an avenue to be as win win as possible.

> BARBIE

>

> ________________________________

> From: Mrs. Byrd <kitkat32308@... <kitkat32308%40>>

> <%40>

> Sent: Sun, January 23, 2011 1:57:18 PM

> Subject: Re: Selective Antibody Deficiency?

>

> I agree. Go to a children hospital and get a second opinion. My daughter

> was

> supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia.

> It

> started from birth. They told me she will outgrow it but didn't. That being

> said

>

> she now has scar tissue on her lungs from all the sickness. I wished we

> would

> have gotten the IVIG allot sooner then we did. Just my own experience with

> it.

> Life has been so much better on the IVIG. But Ursula is right. It is a

> blood

> product. I hope you get some answers soon!

>

> Byrd

>

> http://www.caringbridge.org/visit/deanabyrd

>

> __________________________________________________________

>

> ________________________________

> From: Ursula Holleman <uahollem@... <uahollem%40gmail.com>>

> <%40>

> Sent: Sun, January 23, 2011 4:51:25 PM

> Subject: Re: Selective Antibody Deficiency?

>

> I'd seek a second opinion. He is at that age where the immune system is

> still maturing and treatment might take a wait and see approach.

> Maintenance antibiotics could help. Our oldest daughter (non-PID) had

> similar issues and outgrew them. She has cruddy sinuses now (18 years old)

> but that's it.

>

> Remember IVIG is a blood product and not having to expose him to it would

> be

> great. What part of the country are you in?

>

> Ursula

> mom to Macey (15,CVID)

>

> On Sat, Jan 22, 2011 at 10:03 PM, amanda

><amandaconstantin@...<amandaconstantin%40>>

> wrote:

>

> >

> >

> > We are waiting on the final set of labs to confirm this diagnosis for my

> > son. 's response went down instead of up last time we checked. All

> of

> > the strains were negative. My immunologist said if his lab work has not

> > improved after him getting his last vaccine in October he wants to start

> > IVIG. His IgG is also low, but has slowly been increasing. My

> pediatrician

> > disagrees and thinks my son will outgrow all of his problems. The

> > pediatrician thinks we should go to a larger children's hospital and get

> a

> > second opinion. My son is only eighteen months old. He has never been

> > hospitalized, but he stays with respiratory infections. He constantly is

> > wheezing and being put on prednisolone to clear it up. He also gets a ton

> of

> > ear infections that take over a month to clear up. Do you ladies think it

> > would be worth seeking out a second opinion or would you just listen to

> the

> > immunologist? I don't want to rush into treatmeant, but I also don't want

> to

> > withhold something that could help him. Thanks in advance for any

> > suggestions

> >

> >

> > 18 months

> >

> >

> >

>

>

[Guest guest]

this sounds so much like my boys. when they were babies, they were constantly

with uri's, sinus infections, always with green runny noses and asthma problems,

the cough never went away. Antibiotics never would clear it up and it just kept

up constantly. We thought once we got the asthma under control, it would get

better. But we couldnt get the asthma under control, bc they constantly had

resp. infections going on that set it off. Their immune system were tested as

infants/toddlers and an igg def was seen, but it was hoped it would be outgrown.

They started IVIG when they were about 4 and 6. The difference has been amazing

and if I had the opportunity to go back, I would have pushed harder to start

IVIG sooner.

good luck,

valarie

mom to 3 w/cvid

>

> >

> >

> > We are waiting on the final set of labs to confirm this diagnosis for my

> > son. 's response went down instead of up last time we checked. All of

> > the strains were negative. My immunologist said if his lab work has not

> > improved after him getting his last vaccine in October he wants to start

> > IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> > disagrees and thinks my son will outgrow all of his problems. The

> > pediatrician thinks we should go to a larger children's hospital and get a

> > second opinion. My son is only eighteen months old. He has never been

> > hospitalized, but he stays with respiratory infections. He constantly is

> > wheezing and being put on prednisolone to clear it up. He also gets a ton of

> > ear infections that take over a month to clear up. Do you ladies think it

> > would be worth seeking out a second opinion or would you just listen to the

> > immunologist? I don't want to rush into treatmeant, but I also don't want to

> > withhold something that could help him. Thanks in advance for any

> > suggestions

> >

> >

> > 18 months

> >

> >

> >

>

>

[Guest guest]

this sounds so much like my boys. when they were babies, they were constantly

with uri's, sinus infections, always with green runny noses and asthma problems,

the cough never went away. Antibiotics never would clear it up and it just kept

up constantly. We thought once we got the asthma under control, it would get

better. But we couldnt get the asthma under control, bc they constantly had

resp. infections going on that set it off. Their immune system were tested as

infants/toddlers and an igg def was seen, but it was hoped it would be outgrown.

They started IVIG when they were about 4 and 6. The difference has been amazing

and if I had the opportunity to go back, I would have pushed harder to start

IVIG sooner.

good luck,

valarie

mom to 3 w/cvid

>

> >

> >

> > We are waiting on the final set of labs to confirm this diagnosis for my

> > son. 's response went down instead of up last time we checked. All of

> > the strains were negative. My immunologist said if his lab work has not

> > improved after him getting his last vaccine in October he wants to start

> > IVIG. His IgG is also low, but has slowly been increasing. My pediatrician

> > disagrees and thinks my son will outgrow all of his problems. The

> > pediatrician thinks we should go to a larger children's hospital and get a

> > second opinion. My son is only eighteen months old. He has never been

> > hospitalized, but he stays with respiratory infections. He constantly is

> > wheezing and being put on prednisolone to clear it up. He also gets a ton of

> > ear infections that take over a month to clear up. Do you ladies think it

> > would be worth seeking out a second opinion or would you just listen to the

> > immunologist? I don't want to rush into treatmeant, but I also don't want to

> > withhold something that could help him. Thanks in advance for any

> > suggestions

> >

> >

> > 18 months

> >

> >

> >

>

>

[Guest guest]

I agree on the second opinion. If you do decide to do IVIG, feel free to email

me regarding what to expect with a child that age-- my eldest was 2.5 and my

youngest 6 months when we started--it's about 9 months later now and my youngest

is 16 months. Good luck to you!

Kimberley

Sent from my iPhone

[Guest guest]

I agree on the second opinion. If you do decide to do IVIG, feel free to email

me regarding what to expect with a child that age-- my eldest was 2.5 and my

youngest 6 months when we started--it's about 9 months later now and my youngest

is 16 months. Good luck to you!

Kimberley

Sent from my iPhone

[Guest guest]

We live in MS, we have seen immuno here and in New Orleans and have

loved them both! We only saw the immuno in NOLA once and then saw the immuno

here since then. I can get you both of their names in you are interested in

seeing either one. We had just moved to this area and had trouble getting into

the immuno in and thus why we started out in NOLA and then switched up

here. I think getting another opinion is always worth while!

Good Luck

Sam 7 CVID, GSD

On Sun, Jan 23, 2011 at 5:36 PM, amandaconstantin@... <

amandaconstantin@...> wrote:

>

>

> We tried doing the maintenance meds, but my son continued to get sick while

> on them. He had a couple ear infections and sinus infections. So they would

> put him on a stronger antibiotic to clear it up. My pediatrician felt they

> weren't working and was worried about him becoming resistant to them since

> he was on so many. My immunologist basically said if we decide against IVIG

> there is nothing else he can do. He thinks with the length of his infections

> and the amount of antibiotics we have to use to clear them up that we would

> greatly benefit from the IVIG. My son was only well for three weeks of last

> year. My pediatrician thinks we.are rushing into treatment. We live in Baton

> Rouge, so we could easily travel to New Orleans to the Children's hospital

> there. I am willing to travel anywhere to get a second opinion. I really

> like my immunologist and wouldn't even question it if my pediatrician was on

> board.

> Thanks,

>

> 18 months

> Sent from my Verizon Wireless Phone

>

> ----- Reply message -----

> From: " Barbara Jimenez " <mother5590@... <mother5590%40>>

> Date: Sun, Jan 23, 2011 4:12 pm

> Subject: Selective Antibody Deficiency?

> < <%40>>

>

>

> I would get another opinion at the Childrens' Hospital. It is s LOT of work

> but

> worth it.

>

> But I would also say that a child that is requiring LOTS of Prednisone and

> has immune issues of not building or keeping antibodies is a candidate for

> treatment. The Pred is not healthy for him either and I personally believe

> more

> than we give credit it for adverse life effects. I know there are LOTS of

> Allergic kids that are on Pred and if they do not have immune issues there

> would

> be NO reason to use Gamma. But...... if the two issues are together I err

> on the

> side of treating so that the lungs and guts are spared damage since they

> need to

> be used for a lifetime. A few years on Gamma and then off for retesting in

> my

> opinion cannot hurt. I know it is a blood product and there are risks but I

>

> think the benefits outweigh the risks. I believe my son Lucas (15) would

> have

> faired better if we had started earlier. I believe many of his emotional

> issues

> are related to being so sick all the time and not being to interact or

> develop

> appropriately for his age. He is still struggling. I wish I had the article

> but

> I read somewhere that there is a belief that kids with immune issues carry

> bacteria in their brains that are a low level infection. Based on that it

> can

> cause some of the emotional struggles. So the question was for me is to

> provide

> an avenue to be as win win as possible.

> BARBIE

>

> ________________________________

> From: Mrs. Byrd <kitkat32308@... <kitkat32308%40>>

> <%40>

> Sent: Sun, January 23, 2011 1:57:18 PM

> Subject: Re: Selective Antibody Deficiency?

>

> I agree. Go to a children hospital and get a second opinion. My daughter

> was

> supposed to outgrow hers but never did. She is 12 and has had 35 pneumonia.

> It

> started from birth. They told me she will outgrow it but didn't. That being

> said

>

> she now has scar tissue on her lungs from all the sickness. I wished we

> would

> have gotten the IVIG allot sooner then we did. Just my own experience with

> it.

> Life has been so much better on the IVIG. But Ursula is right. It is a

> blood

> product. I hope you get some answers soon!

>

> Byrd

>

> http://www.caringbridge.org/visit/deanabyrd

>

> __________________________________________________________

>

> ________________________________

> From: Ursula Holleman <uahollem@... <uahollem%40gmail.com>>

> <%40>

> Sent: Sun, January 23, 2011 4:51:25 PM

> Subject: Re: Selective Antibody Deficiency?

>

> I'd seek a second opinion. He is at that age where the immune system is

> still maturing and treatment might take a wait and see approach.

> Maintenance antibiotics could help. Our oldest daughter (non-PID) had

> similar issues and outgrew them. She has cruddy sinuses now (18 years old)

> but that's it.

>

> Remember IVIG is a blood product and not having to expose him to it would

> be

> great. What part of the country are you in?

>

> Ursula

> mom to Macey (15,CVID)

>

> On Sat, Jan 22, 2011 at 10:03 PM, amanda

><amandaconstantin@...<amandaconstantin%40>>

> wrote:

>

> >

> >

> > We are waiting on the final set of labs to confirm this diagnosis for my

> > son. 's response went down instead of up last time we checked. All

> of

> > the strains were negative. My immunologist said if his lab work has not

> > improved after him getting his last vaccine in October he wants to start

> > IVIG. His IgG is also low, but has slowly been increasing. My

> pediatrician

> > disagrees and thinks my son will outgrow all of his problems. The

> > pediatrician thinks we should go to a larger children's hospital and get

> a

> > second opinion. My son is only eighteen months old. He has never been

> > hospitalized, but he stays with respiratory infections. He constantly is

> > wheezing and being put on prednisolone to clear it up. He also gets a ton

> of

> > ear infections that take over a month to clear up. Do you ladies think it

> > would be worth seeking out a second opinion or would you just listen to

> the

> > immunologist? I don't want to rush into treatmeant, but I also don't want

> to

> > withhold something that could help him. Thanks in advance for any

> > suggestions

> >

> >

> > 18 months

> >

> >

> >

>

>

[Guest guest]

I might want the names of the Doctor's in Little Rock and New Orleans. I will

get his lab results back on Monday and then let yall know.

He has been on asthma meds since he was 10 months old. We have switched them a

few times. We are now on advair and albuterol as needed (which has been at least

twice a day for a while now). He is also on Singulair and Nasonex. It doesn't

matter what meds he takes he is always congested. Then a few days later he is

wheezing again. It is a never ending cycle. I am a stay at home mom, but he has

an older brother and sister who bring home all kinds of germs for him. I have

tried keeping him pretty isolated at home, but it doesn't help.

The immuno is also concerned because his weight dropped from the 80th percentile

at his 15 month checkup to the 20th percentile at his 18 month checkup. Does

anyone have any experience with this?

As far as I know we don't have any family with immune deficiencies.

Thanks for all of the input so far. I really appreciate it.

18 months

Sent from my Verizon Wireless Phone

[Guest guest]

I might want the names of the Doctor's in Little Rock and New Orleans. I will

get his lab results back on Monday and then let yall know.

He has been on asthma meds since he was 10 months old. We have switched them a

few times. We are now on advair and albuterol as needed (which has been at least

twice a day for a while now). He is also on Singulair and Nasonex. It doesn't

matter what meds he takes he is always congested. Then a few days later he is

wheezing again. It is a never ending cycle. I am a stay at home mom, but he has

an older brother and sister who bring home all kinds of germs for him. I have

tried keeping him pretty isolated at home, but it doesn't help.

The immuno is also concerned because his weight dropped from the 80th percentile

at his 15 month checkup to the 20th percentile at his 18 month checkup. Does

anyone have any experience with this?

As far as I know we don't have any family with immune deficiencies.

Thanks for all of the input so far. I really appreciate it.

18 months

Sent from my Verizon Wireless Phone

[Guest guest]

He has had silent reflux since he was a baby. They just took him off Prevacid

last month. I'm not sure if he is still having reflux issues or not.

How do you know if an infection has cleared up all the way? He was on an

antibiotic for three weeks to clear up an ear infection and prednisolone for two

weeks to stop his wheezing. He just finished all of that a week and a half ago

then a few days later he started with a cough again. That's when we switched

from Flovent to Advair.

Thanks

Sent from my Verizon Wireless Phone

----- Reply message -----

From: " Herzberg " <skgcifamily@...>

Date: Mon, Jan 24, 2011 9:58 pm

Subject: Re: Selective Antibody Deficiency?

< >

,

Does he have reflux or has he ever been checked for reflux? That can really

exacerbate asthma and cause congestion and sinus issues as well. Also,

underlying infection is one of the biggest triggers of asthma. I would

wonder if he has an infection that is never being fully treated and thus it

is a vicious cycle. As far as the weight issues, yes we have experience with

that. My son is now 11, but was diagnosed at 1 year with IgA and IgG

deficiency and then a year later with specific antibody deficiency and some

t-cell anomalies. Anyway, he went on IVIG at 2.5 years of age. Then we moved

and stopped treatment but continued antibiotics. We home schooled and stayed

isolated for a long time and kept thinking he was outgrowing his issues.

Then we put him in KG and he got really sick with pneumonia, strep, etc. He

missed nearly the whole year. Same thing in first. Then we home schooled

again and he did ok. He was isolated, but chronically stuffy and asthma out

of control. He went from the 85% for height and weight down to the 20% for

both and we finally got all of his #;s rechecked. Specific antibody

deficiency, t-cell issue and low IgG and IgM. He is now back on IVIG (sub-q

Hizentra) and in the months since we started this past fall, he's had his

sinus infection completely cleared (before starting IVIG) and has been

largely infection free and put on 10lbs that he had lost the previous year.

So, my very long point in all of that is that the infections can definitely

start to affect their growth. They have at several different times in my

son's life.

Mom to Caelan 11

Subject: Re: Selective Antibody Deficiency?

I might want the names of the Doctor's in Little Rock and New Orleans. I

will get his lab results back on Monday and then let yall know.

He has been on asthma meds since he was 10 months old. We have switched them

a few times. We are now on advair and albuterol as needed (which has been at

least twice a day for a while now). He is also on Singulair and Nasonex. It

doesn't matter what meds he takes he is always congested. Then a few days

later he is wheezing again. It is a never ending cycle. I am a stay at home

mom, but he has an older brother and sister who bring home all kinds of

germs for him. I have tried keeping him pretty isolated at home, but it

doesn't help.

The immuno is also concerned because his weight dropped from the 80th

percentile at his 15 month checkup to the 20th percentile at his 18 month

checkup. Does anyone have any experience with this?

As far as I know we don't have any family with immune deficiencies.

Thanks for all of the input so far. I really appreciate it.

18 months

[Guest guest]

He has had silent reflux since he was a baby. They just took him off Prevacid

last month. I'm not sure if he is still having reflux issues or not.

How do you know if an infection has cleared up all the way? He was on an

antibiotic for three weeks to clear up an ear infection and prednisolone for two

weeks to stop his wheezing. He just finished all of that a week and a half ago

then a few days later he started with a cough again. That's when we switched

from Flovent to Advair.

Thanks

Sent from my Verizon Wireless Phone

----- Reply message -----

From: " Herzberg " <skgcifamily@...>

Date: Mon, Jan 24, 2011 9:58 pm

Subject: Re: Selective Antibody Deficiency?

< >

,

Does he have reflux or has he ever been checked for reflux? That can really

exacerbate asthma and cause congestion and sinus issues as well. Also,

underlying infection is one of the biggest triggers of asthma. I would

wonder if he has an infection that is never being fully treated and thus it

is a vicious cycle. As far as the weight issues, yes we have experience with

that. My son is now 11, but was diagnosed at 1 year with IgA and IgG

deficiency and then a year later with specific antibody deficiency and some

t-cell anomalies. Anyway, he went on IVIG at 2.5 years of age. Then we moved

and stopped treatment but continued antibiotics. We home schooled and stayed

isolated for a long time and kept thinking he was outgrowing his issues.

Then we put him in KG and he got really sick with pneumonia, strep, etc. He

missed nearly the whole year. Same thing in first. Then we home schooled

again and he did ok. He was isolated, but chronically stuffy and asthma out

of control. He went from the 85% for height and weight down to the 20% for

both and we finally got all of his #;s rechecked. Specific antibody

deficiency, t-cell issue and low IgG and IgM. He is now back on IVIG (sub-q

Hizentra) and in the months since we started this past fall, he's had his

sinus infection completely cleared (before starting IVIG) and has been

largely infection free and put on 10lbs that he had lost the previous year.

So, my very long point in all of that is that the infections can definitely

start to affect their growth. They have at several different times in my

son's life.

Mom to Caelan 11

Subject: Re: Selective Antibody Deficiency?

I might want the names of the Doctor's in Little Rock and New Orleans. I

will get his lab results back on Monday and then let yall know.

He has been on asthma meds since he was 10 months old. We have switched them

a few times. We are now on advair and albuterol as needed (which has been at

least twice a day for a while now). He is also on Singulair and Nasonex. It

doesn't matter what meds he takes he is always congested. Then a few days

later he is wheezing again. It is a never ending cycle. I am a stay at home

mom, but he has an older brother and sister who bring home all kinds of

germs for him. I have tried keeping him pretty isolated at home, but it

doesn't help.

The immuno is also concerned because his weight dropped from the 80th

percentile at his 15 month checkup to the 20th percentile at his 18 month

checkup. Does anyone have any experience with this?

As far as I know we don't have any family with immune deficiencies.

Thanks for all of the input so far. I really appreciate it.

18 months