Our appt this morning-comedy relief and Dale

[Guest guest]

Had to share this with everyone -

I am standing there trying to get our stupid insurance stuff sorted out and the

secretary says, " that will be a $10.00 co-pay " . I did not have the cash on me

(hubby usually takes care of this) and felt so stupid b/c our immuno was

standing right there--waiting to see my daughter. He squeezed us into his busy

day. And then, the secretary said, " your doc can override the co-pay " . My

immuno said, " No! " and then took out his wallet and gave me $10.00 cash.

Dale -

This is the longest my daughter has ever gone b/t infusions and, would you

believe, she got nailed with a nasty bug last week? I asked out immuno what he

thought about my daughter's IgG levels being okay and he said, " what is as

important is her clinical symptoms " . So, we are back to 3.5 week interval this

time around. It is possible that she needed more so some " specific " antibody

that had a short 1/2 life in the bag...

(mom to la)

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

>

>Dale -

>This is the longest my daughter has ever gone b/t infusions and, would you

believe, she got nailed with a nasty bug last week? I asked out immuno what he

thought about my daughter's IgG levels being okay and he said, " what is as

important is her clinical symptoms " . So, we are back to 3.5 week interval this

time around. It is possible that she needed more so some " specific " antibody

that had a short 1/2 life in the bag...

>

>

>

, the latest studies are showing that the half-life of IgG is 21

days -- so many doctors who once recommended 4 to 6 weeks for infusions

have changed to a 3 week schedule. But a lot of it depends on the

clinical picture -- if I was giving it every 4 weeks and they were

staying healthy, I wouldn't change. But, if the clinical picture is not

good -- then 3 weeks is the preferred time because of the new research

showing that IgG begins to deteriorate at that point. Katy did fine at

4 weeks for several years -- but for the past 2 or 3 years she was

always showing a dip in energy level and rate of infections during that

last week -- nothing big or nasty -- just stomach bugs and headaches and

sniffles, etc.

Katy switched to SCIG (Sub-Q) in January and absolutely loves it. It

also seems to be keeping her at a continual level so that she doesn't

feel that 4th week drop in energy or protection.

Hope that helps,

In His service,

Dale

[Guest guest]

" , the latest studies are showing that the half-life of IgG is 21 days --

so many doctors who once recommended 4 to 6 weeks for infusions "

Hi, Dale. Thanks for your reply. I remember you saying this last month and was

nervous that our daughter was scheduled for a 4.5 week interval and then, bang,

she got sooo sick. I feel so torn because her IgG levels sometimes seem really

good at 900-1000 at trough and think to myself, " I don't want to put her though

another IVIG too early...and wonder if more IgG than absolutely necessary could

affect her little body " ...and then I think, " I don't want to cause her more pain

and suffering by not doing an infusion soon enough and causing her to get a

needless infection " . It is so difficult to juggle these things but we do feel

fortunate that our immuno gives la some flexibility with the intervals.

Do you have any thoughts about this?

Thank you. (mom to la, low everything and still healing from

infection)

Dale Weatherford <dale@...> wrote:

from Dale, Mom to Katy, CVID, age 20

>

>Dale -

>This is the longest my daughter has ever gone b/t infusions and, would you

believe, she got nailed with a nasty bug last week? I asked out immuno what he

thought about my daughter's IgG levels being okay and he said, " what is as

important is her clinical symptoms " . So, we are back to 3.5 week interval this

time around. It is possible that she needed more so some " specific " antibody

that had a short 1/2 life in the bag...

>

>

>

, the latest studies are showing that the half-life of IgG is 21

days -- so many doctors who once recommended 4 to 6 weeks for infusions

have changed to a 3 week schedule. But a lot of it depends on the

clinical picture -- if I was giving it every 4 weeks and they were

staying healthy, I wouldn't change. But, if the clinical picture is not

good -- then 3 weeks is the preferred time because of the new research

showing that IgG begins to deteriorate at that point. Katy did fine at

4 weeks for several years -- but for the past 2 or 3 years she was

always showing a dip in energy level and rate of infections during that

last week -- nothing big or nasty -- just stomach bugs and headaches and

sniffles, etc.

Katy switched to SCIG (Sub-Q) in January and absolutely loves it. It

also seems to be keeping her at a continual level so that she doesn't

feel that 4th week drop in energy or protection.

Hope that helps,

In His service,

Dale

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

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

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

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

---------------------------------

[Guest guest]

-

Maybe Dale could correct me if I'm wrong - but does one time of her

getting sick with a longer interval warrant moving it up? It sounds to

me like the IDEAL thing happened - she got passed it, on her own,

without the need for serious intervention. I always try to think that

with IVIG they are more like normal kids - they'll get infections, but

they should get passed them, and it should not piggy back into multiple

infections. I know there are three major bugs going around the SCV

right now - one is RotaVirus, one is pink eye and one is some virus with

a high fever, and nonspecific symptoms... Do any of those sound like

what she got?

Good luck with your decision, it's a difficult balancing act.

Dayna

Re: Our appt this morning-comedy relief and Dale

" , the latest studies are showing that the half-life of IgG is 21

days -- so many doctors who once recommended 4 to 6 weeks for infusions "

Hi, Dale. Thanks for your reply. I remember you saying this last month

and was nervous that our daughter was scheduled for a 4.5 week interval

and then, bang, she got sooo sick. I feel so torn because her IgG

levels sometimes seem really good at 900-1000 at trough and think to

myself, " I don't want to put her though another IVIG too early...and

wonder if more IgG than absolutely necessary could affect her little

body " ...and then I think, " I don't want to cause her more pain and

suffering by not doing an infusion soon enough and causing her to get a

needless infection " . It is so difficult to juggle these things but we

do feel fortunate that our immuno gives la some flexibility with

the intervals.

Do you have any thoughts about this?

Thank you. (mom to la, low everything and still healing

from infection)

Dale Weatherford <dale@...> wrote:

from Dale, Mom to Katy, CVID, age 20

>

>Dale -

>This is the longest my daughter has ever gone b/t infusions and, would

you believe, she got nailed with a nasty bug last week? I asked out

immuno what he thought about my daughter's IgG levels being okay and he

said, " what is as important is her clinical symptoms " . So, we are back

to 3.5 week interval this time around. It is possible that she needed

more so some " specific " antibody that had a short 1/2 life in the bag...

>

>

>

, the latest studies are showing that the half-life of IgG is 21

days -- so many doctors who once recommended 4 to 6 weeks for infusions

have changed to a 3 week schedule. But a lot of it depends on the

clinical picture -- if I was giving it every 4 weeks and they were

staying healthy, I wouldn't change. But, if the clinical picture is not

good -- then 3 weeks is the preferred time because of the new research

showing that IgG begins to deteriorate at that point. Katy did fine at

4 weeks for several years -- but for the past 2 or 3 years she was

always showing a dip in energy level and rate of infections during that

last week -- nothing big or nasty -- just stomach bugs and headaches and

sniffles, etc.

Katy switched to SCIG (Sub-Q) in January and absolutely loves it. It

also seems to be keeping her at a continual level so that she doesn't

feel that 4th week drop in energy or protection.

Hope that helps,

In His service,

Dale

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

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

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

professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

---------------------------------

[Guest guest]

-

Maybe Dale could correct me if I'm wrong - but does one time of her

getting sick with a longer interval warrant moving it up? It sounds to

me like the IDEAL thing happened - she got passed it, on her own,

without the need for serious intervention. I always try to think that

with IVIG they are more like normal kids - they'll get infections, but

they should get passed them, and it should not piggy back into multiple

infections. I know there are three major bugs going around the SCV

right now - one is RotaVirus, one is pink eye and one is some virus with

a high fever, and nonspecific symptoms... Do any of those sound like

what she got?

Good luck with your decision, it's a difficult balancing act.

Dayna

Re: Our appt this morning-comedy relief and Dale

" , the latest studies are showing that the half-life of IgG is 21

days -- so many doctors who once recommended 4 to 6 weeks for infusions "

Hi, Dale. Thanks for your reply. I remember you saying this last month

and was nervous that our daughter was scheduled for a 4.5 week interval

and then, bang, she got sooo sick. I feel so torn because her IgG

levels sometimes seem really good at 900-1000 at trough and think to

myself, " I don't want to put her though another IVIG too early...and

wonder if more IgG than absolutely necessary could affect her little

body " ...and then I think, " I don't want to cause her more pain and

suffering by not doing an infusion soon enough and causing her to get a

needless infection " . It is so difficult to juggle these things but we

do feel fortunate that our immuno gives la some flexibility with

the intervals.

Do you have any thoughts about this?

Thank you. (mom to la, low everything and still healing

from infection)

Dale Weatherford <dale@...> wrote:

from Dale, Mom to Katy, CVID, age 20

>

>Dale -

>This is the longest my daughter has ever gone b/t infusions and, would

you believe, she got nailed with a nasty bug last week? I asked out

immuno what he thought about my daughter's IgG levels being okay and he

said, " what is as important is her clinical symptoms " . So, we are back

to 3.5 week interval this time around. It is possible that she needed

more so some " specific " antibody that had a short 1/2 life in the bag...

>

>

>

, the latest studies are showing that the half-life of IgG is 21

days -- so many doctors who once recommended 4 to 6 weeks for infusions

have changed to a 3 week schedule. But a lot of it depends on the

clinical picture -- if I was giving it every 4 weeks and they were

staying healthy, I wouldn't change. But, if the clinical picture is not

good -- then 3 weeks is the preferred time because of the new research

showing that IgG begins to deteriorate at that point. Katy did fine at

4 weeks for several years -- but for the past 2 or 3 years she was

always showing a dip in energy level and rate of infections during that

last week -- nothing big or nasty -- just stomach bugs and headaches and

sniffles, etc.

Katy switched to SCIG (Sub-Q) in January and absolutely loves it. It

also seems to be keeping her at a continual level so that she doesn't

feel that 4th week drop in energy or protection.

Hope that helps,

In His service,

Dale

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

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

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

professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

---------------------------------

[Guest guest]

from Dale, Mom to Katy CVID, age 20

, Katy's trough level was taken very frequently while they were

introducing IVIG. We watched it climb, climb, climb. That was so cool.

But then she reached the therapeutic level - for her that was around

950. Once about a year later, her doctor decided he wanted her to try

to go 6 weeks instead of 4. At 5 weeks she was so much worse and we

tested the trough. It had not dipped at all. We decided to go ahead

and start IVIG -- she was immediately better clinically. His theory was

that the IgG was still circulating in the blood but it had lost it's

capability to build a response. (Shooting blanks). So, the trough can

show whether or not you are getting enough IgG's but can't be depended

on to determine function. Does that make sense. It's the same reason

that you can't test her native IgG level for 3 months after giving IVIG

-- anytime sooner would show the circulating IgG's that are still left

over from the IVIG even though they have no strength or function.

I think that what you are seeing is that the trough level can only

measure the circulating IgG -- but does not check to see if they are

still functional. The clinical picture tells you whether or not they

are functioning. Does that make sense?

Can she get too much IgG? I don't think so. The body actually

regulates in a really beautiful way. IgM is a precursor molecule that

then breaks into IgA and IgG's - depending on which is needed most. It

would be an interesting study to see if consistently giving her more IgG

would eventually lead the IgM to produce more IgA. As far as I know --

it's never been tested. But, my theory would be that it wouldn't hurt!

There are several medical procedures where IVIG is given at massive

doses to people with perfectly good immune systems and they suffer no

ill effects.

I would worry more about needless infections than overdosing on IgG.

Those needless infections can cause permanent damage and weaken the body.

In His service,

Dale

> her IgG levels sometimes seem really good at 900-1000 at trough and think to

myself, " I don't want to put her though another IVIG too early...and wonder if

more IgG than absolutely necessary could affect her little body " ...and then I

think, " I don't want to cause her more pain and suffering by not doing an

infusion soon enough and causing her to get a needless infection " .

>

[Guest guest]

from Dale, Mom to Katy CVID, age 20

, Katy's trough level was taken very frequently while they were

introducing IVIG. We watched it climb, climb, climb. That was so cool.

But then she reached the therapeutic level - for her that was around

950. Once about a year later, her doctor decided he wanted her to try

to go 6 weeks instead of 4. At 5 weeks she was so much worse and we

tested the trough. It had not dipped at all. We decided to go ahead

and start IVIG -- she was immediately better clinically. His theory was

that the IgG was still circulating in the blood but it had lost it's

capability to build a response. (Shooting blanks). So, the trough can

show whether or not you are getting enough IgG's but can't be depended

on to determine function. Does that make sense. It's the same reason

that you can't test her native IgG level for 3 months after giving IVIG

-- anytime sooner would show the circulating IgG's that are still left

over from the IVIG even though they have no strength or function.

I think that what you are seeing is that the trough level can only

measure the circulating IgG -- but does not check to see if they are

still functional. The clinical picture tells you whether or not they

are functioning. Does that make sense?

Can she get too much IgG? I don't think so. The body actually

regulates in a really beautiful way. IgM is a precursor molecule that

then breaks into IgA and IgG's - depending on which is needed most. It

would be an interesting study to see if consistently giving her more IgG

would eventually lead the IgM to produce more IgA. As far as I know --

it's never been tested. But, my theory would be that it wouldn't hurt!

There are several medical procedures where IVIG is given at massive

doses to people with perfectly good immune systems and they suffer no

ill effects.

I would worry more about needless infections than overdosing on IgG.

Those needless infections can cause permanent damage and weaken the body.

In His service,

Dale

> her IgG levels sometimes seem really good at 900-1000 at trough and think to

myself, " I don't want to put her though another IVIG too early...and wonder if

more IgG than absolutely necessary could affect her little body " ...and then I

think, " I don't want to cause her more pain and suffering by not doing an

infusion soon enough and causing her to get a needless infection " .

>

[Guest guest]

Thanks, Dayna.

Unfortunately, she is not over the infection -- yet. Also, you mentioned that

the pain in her leg is probably growing pain. Wouldn't that be cool.

fladfam <fladfam@...> wrote:

-

Maybe Dale could correct me if I'm wrong - but does one time of her

getting sick with a longer interval warrant moving it up? It sounds to

me like the IDEAL thing happened - she got passed it, on her own,

without the need for serious intervention. I always try to think that

with IVIG they are more like normal kids - they'll get infections, but

they should get passed them, and it should not piggy back into multiple

infections. I know there are three major bugs going around the SCV

right now - one is RotaVirus, one is pink eye and one is some virus with

a high fever, and nonspecific symptoms... Do any of those sound like

what she got?

Good luck with your decision, it's a difficult balancing act.

Dayna

Re: Our appt this morning-comedy relief and Dale

" , the latest studies are showing that the half-life of IgG is 21

days -- so many doctors who once recommended 4 to 6 weeks for infusions "

Hi, Dale. Thanks for your reply. I remember you saying this last month

and was nervous that our daughter was scheduled for a 4.5 week interval

and then, bang, she got sooo sick. I feel so torn because her IgG

levels sometimes seem really good at 900-1000 at trough and think to

myself, " I don't want to put her though another IVIG too early...and

wonder if more IgG than absolutely necessary could affect her little

body " ...and then I think, " I don't want to cause her more pain and

suffering by not doing an infusion soon enough and causing her to get a

needless infection " . It is so difficult to juggle these things but we

do feel fortunate that our immuno gives la some flexibility with

the intervals.

Do you have any thoughts about this?

Thank you. (mom to la, low everything and still healing

from infection)

Dale Weatherford <dale@...> wrote:

from Dale, Mom to Katy, CVID, age 20

>

>Dale -

>This is the longest my daughter has ever gone b/t infusions and, would

you believe, she got nailed with a nasty bug last week? I asked out

immuno what he thought about my daughter's IgG levels being okay and he

said, " what is as important is her clinical symptoms " . So, we are back

to 3.5 week interval this time around. It is possible that she needed

more so some " specific " antibody that had a short 1/2 life in the bag...

>

>

>

, the latest studies are showing that the half-life of IgG is 21

days -- so many doctors who once recommended 4 to 6 weeks for infusions

have changed to a 3 week schedule. But a lot of it depends on the

clinical picture -- if I was giving it every 4 weeks and they were

staying healthy, I wouldn't change. But, if the clinical picture is not

good -- then 3 weeks is the preferred time because of the new research

showing that IgG begins to deteriorate at that point. Katy did fine at

4 weeks for several years -- but for the past 2 or 3 years she was

always showing a dip in energy level and rate of infections during that

last week -- nothing big or nasty -- just stomach bugs and headaches and

sniffles, etc.

Katy switched to SCIG (Sub-Q) in January and absolutely loves it. It

also seems to be keeping her at a continual level so that she doesn't

feel that 4th week drop in energy or protection.

Hope that helps,

In His service,

Dale

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

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

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

professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

---------------------------------

[Guest guest]

" trough can show whether or not you are getting enough IgG's but can't be

depended on to determine function. Does that make sense. "

Hi, Dale. This makes perfect sense! Right now, she is holding her ground with

some crud in her lungs -- but is not over the infection. Our doc wants to give

her antibiotics if she does not get better soon. But, she does not respond well

to antibiotics so they are only given in dire circumstances. Our hope is that

she will keep improving and make it to the next IVIG without them.

She did the best with 3-4 week intervals -- just a little cold now and then.

Like " normal " kids. I am so grateful for your informed opinions.

Warmly,

(mom to la, low everything and a real trooper).

Dale Weatherford <dale@...> wrote:

from Dale, Mom to Katy CVID, age 20

, Katy's trough level was taken very frequently while they were

introducing IVIG. We watched it climb, climb, climb. That was so cool.

But then she reached the therapeutic level - for her that was around

950. Once about a year later, her doctor decided he wanted her to try

to go 6 weeks instead of 4. At 5 weeks she was so much worse and we

tested the trough. It had not dipped at all. We decided to go ahead

and start IVIG -- she was immediately better clinically. His theory was

that the IgG was still circulating in the blood but it had lost it's

capability to build a response. (Shooting blanks). So, the trough can

show whether or not you are getting enough IgG's but can't be depended

on to determine function. Does that make sense. It's the same reason

that you can't test her native IgG level for 3 months after giving IVIG

-- anytime sooner would show the circulating IgG's that are still left

over from the IVIG even though they have no strength or function.

I think that what you are seeing is that the trough level can only

measure the circulating IgG -- but does not check to see if they are

still functional. The clinical picture tells you whether or not they

are functioning. Does that make sense?

Can she get too much IgG? I don't think so. The body actually

regulates in a really beautiful way. IgM is a precursor molecule that

then breaks into IgA and IgG's - depending on which is needed most. It

would be an interesting study to see if consistently giving her more IgG

would eventually lead the IgM to produce more IgA. As far as I know --

it's never been tested. But, my theory would be that it wouldn't hurt!

There are several medical procedures where IVIG is given at massive

doses to people with perfectly good immune systems and they suffer no

ill effects.

I would worry more about needless infections than overdosing on IgG.

Those needless infections can cause permanent damage and weaken the body.

In His service,

Dale

> her IgG levels sometimes seem really good at 900-1000 at trough and think to

myself, " I don't want to put her though another IVIG too early...and wonder if

more IgG than absolutely necessary could affect her little body " ...and then I

think, " I don't want to cause her more pain and suffering by not doing an

infusion soon enough and causing her to get a needless infection " .

>

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

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

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

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

---------------------------------