Re: location for ivig....

[Guest guest]

They really advocated for us to get the Sub Q going here in WA state. We were

told that we had to do it IV but finally got it put together to do the Sub Q

They promised that they would send a nurse to us in Bellingham which is about 2

hours from Seattle but stopped it abruptly without talking to me.( I was in

Oklahoma at the time due my son losing his insurance there, I had to send him

to WA state to live with his dad for 5 months. ) They said it was too expensive

to send a nurse any longer when I called but did not tell me until they had

stopped the service. ( I get it but then my 17 yo daughter had to start giving

infusions. When I finally was able to move I found her technique HORRIBLE( not

sterile in any way) . I could not believe they let her do it. Lots of stories

good thing I do not freak out easily myself.

BARBIE

________________________________

From: Sue Bordelon <sudubo@...>

Sent: Fri, October 15, 2010 9:06:22 PM

Subject: Re: location for ivig....

I like Accredo, they were who supplied his IVIG to the heme/onc clinic where he

would go to the infusion clinic, but now the Infusion Center gets it directly

from Talecris. Sue

From: SKGCI Family <skgcifamily@...>

Subject: RE: location for ivig....

Date: Friday, October 15, 2010, 4:57 PM

Thanks . I would really rather do the SCIG. I pulled up some of the

studies of reactions with IVIG vs the SCIG and it was such a dramatic

difference. I have a medical background so it's not like I'm squeamish about

setting it up etc. Plus, we pay a % co-pay so cheaper is much better!

Thanks,

Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation

defect)

From: bluetaelon@...

Date: Fri, 15 Oct 2010 09:51:58 -0700

Subject: Re: location for ivig....

Way cheaper, it was costing the insurance $5000 mo for 1 day in the

hem/ATC

infusion center, I didn't check the price on SCIQ at first but later I got

curious after we doubled the Ig dose and asked. Even after we doubled the Ig

dose it was only costing the insurance co $1,200 mo for everything. Its no

wonder the they jumped on it when we asked. It saves so much that some states

medicaid programs only cover SCIG in home and not regular IVIG.

________________________________

From: K <nalla70@...>

Sent: Fri, October 15, 2010 9:24:48 AM

Subject: location for ivig....

I am betting the subq is cheaper as you learn quickly to do it at home

yourselves and do not incur hospital charges etc....really check into it!!!

Makenzie 10

21

[Guest guest]

They really advocated for us to get the Sub Q going here in WA state. We were

told that we had to do it IV but finally got it put together to do the Sub Q

They promised that they would send a nurse to us in Bellingham which is about 2

hours from Seattle but stopped it abruptly without talking to me.( I was in

Oklahoma at the time due my son losing his insurance there, I had to send him

to WA state to live with his dad for 5 months. ) They said it was too expensive

to send a nurse any longer when I called but did not tell me until they had

stopped the service. ( I get it but then my 17 yo daughter had to start giving

infusions. When I finally was able to move I found her technique HORRIBLE( not

sterile in any way) . I could not believe they let her do it. Lots of stories

good thing I do not freak out easily myself.

BARBIE

________________________________

From: Sue Bordelon <sudubo@...>

Sent: Fri, October 15, 2010 9:06:22 PM

Subject: Re: location for ivig....

I like Accredo, they were who supplied his IVIG to the heme/onc clinic where he

would go to the infusion clinic, but now the Infusion Center gets it directly

from Talecris. Sue

From: SKGCI Family <skgcifamily@...>

Subject: RE: location for ivig....

Date: Friday, October 15, 2010, 4:57 PM

Thanks . I would really rather do the SCIG. I pulled up some of the

studies of reactions with IVIG vs the SCIG and it was such a dramatic

difference. I have a medical background so it's not like I'm squeamish about

setting it up etc. Plus, we pay a % co-pay so cheaper is much better!

Thanks,

Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation

defect)

From: bluetaelon@...

Date: Fri, 15 Oct 2010 09:51:58 -0700

Subject: Re: location for ivig....

Way cheaper, it was costing the insurance $5000 mo for 1 day in the

hem/ATC

infusion center, I didn't check the price on SCIQ at first but later I got

curious after we doubled the Ig dose and asked. Even after we doubled the Ig

dose it was only costing the insurance co $1,200 mo for everything. Its no

wonder the they jumped on it when we asked. It saves so much that some states

medicaid programs only cover SCIG in home and not regular IVIG.

________________________________

From: K <nalla70@...>

Sent: Fri, October 15, 2010 9:24:48 AM

Subject: location for ivig....

I am betting the subq is cheaper as you learn quickly to do it at home

yourselves and do not incur hospital charges etc....really check into it!!!

Makenzie 10

21

[Guest guest]

I would address it with them. I was surprised actually. When we did go to the

Immunologists office to start it weekly he wanted me to hold him and have him

put his arm around me. Again I was VERY surprised because it really did not hurt

that much it was the comforting that he wanted.

BARBIE

________________________________

From: SKGCI Family <skgcifamily@...>

Sent: Fri, October 15, 2010 9:02:50 PM

Subject: RE: location for ivig....

Barbie,

Thank you for sharing your story. That is actually one of my biggest worries

with the sub-Q. I have no issue with starting it ( have a medical background),

but I worry about my son feeling like it is something that I am doing to him or

that I am hurting him.

From: mother5590@...

Date: Fri, 15 Oct 2010 19:42:16 -0700

Subject: Re: location for ivig....

The BIGGEST issue for me is that my son has spent a great deal of counseling

$$$'s trying to get over " mom " sticking him or MAKING him get poked. It has been

a LONG haul trying to convince him that I do not LIKE to punish him by

requiring all of this. I know that is NOT this way for all of our kids. But for

my kid it has been traumatic to not be allowed the assistance of a nurse to work

with at home or for him to have the choice to go to a clinic to get his Sub Q

started. We are finally doing well about it all. I had to insist 2 years ago

that it be started by a nurse in the Immunologists office. ( I am a Pediatric RN

so makes NO sense at all). We were REALLY struggling for many months trying to

figure out his refusal to do his Gamma and finally figured it out.. He finally

told me at 12 that a mom is suppose to HUG you and love you not Poke you. This

did not become an issue until he was a teen and I am glad he figured it out or

we could have continued in a very difficult relationship throughout his teen

years. It is important to talk to your kids about all of this so they do not

" carry " this resentment.

BARBIE

[Guest guest]

that is the reason my kids dont want to switch to subq. They say they want me to

stay their mom and comfort them, not be the nure and stick them. Right now, Im

respecting that. If they change their minds, they know they can switch. But Im

not going to force them. They do great with IVIG, and have wonderful nurses.

We go to our hospitals infusion room and always have. Its nice, its not like a

regular hospital room. There are comfy recliners, games, a big flat screen for

movies, a game cube and tons of games. Often, my daughter will bring beads or

crafts and the nurses will sit and do those with her:)

We used to have a problem with my sons fighting over who HAD to go first. Then,

last yr for Christmas, we bought one boy a DSI and one boy a PSP. The catch is,

they are only allowed to play with them on IVIG day:) now they just about knock

each other down trying to get to their line in first, ROFL.

valarie

mom to 3 w/cvid

>

>

>

> Barbie,

>

> Thank you for sharing your story. That is actually one of my biggest worries

with the sub-Q. I have no issue with starting it ( have a medical background),

but I worry about my son feeling like it is something that I am doing to him or

that I am hurting him.

>

>

>

> From: mother5590@...

> Date: Fri, 15 Oct 2010 19:42:16 -0700

> Subject: Re: location for ivig....

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> The BIGGEST issue for me is that my son has spent a great deal of

counseling

>

> $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has

been

>

> a LONG haul trying to convince him that I do not LIKE to punish him by

>

> requiring all of this. I know that is NOT this way for all of our kids. But

for

>

> my kid it has been traumatic to not be allowed the assistance of a nurse to

work

>

> with at home or for him to have the choice to go to a clinic to get his Sub Q

>

> started. We are finally doing well about it all. I had to insist 2 years ago

>

> that it be started by a nurse in the Immunologists office. ( I am a Pediatric

RN

>

> so makes NO sense at all). We were REALLY struggling for many months trying to

>

> figure out his refusal to do his Gamma and finally figured it out.. He finally

>

> told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

>

> did not become an issue until he was a teen and I am glad he figured it out or

>

> we could have continued in a very difficult relationship throughout his teen

>

> years. It is important to talk to your kids about all of this so they do not

>

> " carry " this resentment.

>

>

>

> BARBIE

>

>

>

>

[Guest guest]

that is the reason my kids dont want to switch to subq. They say they want me to

stay their mom and comfort them, not be the nure and stick them. Right now, Im

respecting that. If they change their minds, they know they can switch. But Im

not going to force them. They do great with IVIG, and have wonderful nurses.

We go to our hospitals infusion room and always have. Its nice, its not like a

regular hospital room. There are comfy recliners, games, a big flat screen for

movies, a game cube and tons of games. Often, my daughter will bring beads or

crafts and the nurses will sit and do those with her:)

We used to have a problem with my sons fighting over who HAD to go first. Then,

last yr for Christmas, we bought one boy a DSI and one boy a PSP. The catch is,

they are only allowed to play with them on IVIG day:) now they just about knock

each other down trying to get to their line in first, ROFL.

valarie

mom to 3 w/cvid

>

>

>

> Barbie,

>

> Thank you for sharing your story. That is actually one of my biggest worries

with the sub-Q. I have no issue with starting it ( have a medical background),

but I worry about my son feeling like it is something that I am doing to him or

that I am hurting him.

>

>

>

> From: mother5590@...

> Date: Fri, 15 Oct 2010 19:42:16 -0700

> Subject: Re: location for ivig....

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> The BIGGEST issue for me is that my son has spent a great deal of

counseling

>

> $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has

been

>

> a LONG haul trying to convince him that I do not LIKE to punish him by

>

> requiring all of this. I know that is NOT this way for all of our kids. But

for

>

> my kid it has been traumatic to not be allowed the assistance of a nurse to

work

>

> with at home or for him to have the choice to go to a clinic to get his Sub Q

>

> started. We are finally doing well about it all. I had to insist 2 years ago

>

> that it be started by a nurse in the Immunologists office. ( I am a Pediatric

RN

>

> so makes NO sense at all). We were REALLY struggling for many months trying to

>

> figure out his refusal to do his Gamma and finally figured it out.. He finally

>

> told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

>

> did not become an issue until he was a teen and I am glad he figured it out or

>

> we could have continued in a very difficult relationship throughout his teen

>

> years. It is important to talk to your kids about all of this so they do not

>

> " carry " this resentment.

>

>

>

> BARBIE

>

>

>

>

[Guest guest]

Please keep in mind....those of you considering Subq......we all have very

different experiences with our children. If you use EMLA, the " sticking " part

won't hurt.....in fact they won't feel it. IVIG was terrible for our

daughter...poor access and horrible anxiety no matter what we did. We have

always been very matter of fact with the subq infusions. Our child with IV

anxiety had a rough start....through on infusion, until she realized that it did

not hurt. We have always made it as " small " a part of our life as possible. We

put everything away in places where we did not have to look at it and be

reminded of it when we were not doing it (we have a veritable hospital hidden

behind closet doors). We have always believed in nurturing, but have been very

careful to not teach the children that infusing and scary....or bad....or even a

negative event. Instead, given that it is a painfree activity, we have always

told them that it is no different than brushing their teeth. The few times

there has been any trauma associated with it, we divert their attention.

So please consider that we all have widely different experiences. I know that,

at times, I wish I did not have to be the one sticking them.....but it is my

worry, not theirs as they don't seem to care and prefer to have me over a nurse.

We have lived with PIDD all of our lives.....all 3 of us having been diagnosed

from a very early age. My children really have no memory of life any other way

and we have helped them understand that it is part of their life....that

everyone has something they live with that they would rather not. At times, my

10 yo will say " I hate this disease " and " I wish I was normal " . I look at her

and say " tell me someone you think is normal " . She will rattle off a few names

and I will remind her of how that person is not normal (after all, are any of us

really normal?). And she will say, " you are right mom (cause aren't moms always

right too?). " It is never about infusing though. It is about having to wear a

mask in public and getting started at when her counts are down; or when she is

not well and cannot go to theater; or when we struggle with docs.......but never

about infusing.

One caveat....if you notice your child is struggling with the issues they live

with on a daily basis, be proactive.....not reactive. Talk to the hospital

child life folks or to a social worker who understands what our children live

with.....even if you notice subtle warning signs. Our children are having to

grow up far before they are ready and have to learn to cope with all the

complexities of their health issues.....from the stress of not feeling good, to

not being able to really explain how they are feeling, to the anxiety they might

have over procedures. Giving them tools to work out their emotions is so

important. They are so much stronger than most adults.....bur they are children

first and those little bodies can hide a ton of emotions that they don't know

how to express or sort through. As their parents, we have to try to comprehend

this and help them through.

Terri

> >

> >

> >

> > Barbie,

> >

> > Thank you for sharing your story. That is actually one of my biggest worries

with the sub-Q. I have no issue with starting it ( have a medical background),

but I worry about my son feeling like it is something that I am doing to him or

that I am hurting him.

> >

> >

> >

> > From: mother5590@

> > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > Subject: Re: location for ivig....

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > The BIGGEST issue for me is that my son has spent a great deal of

counseling

> >

> > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has

been

> >

> > a LONG haul trying to convince him that I do not LIKE to punish him by

> >

> > requiring all of this. I know that is NOT this way for all of our kids. But

for

> >

> > my kid it has been traumatic to not be allowed the assistance of a nurse to

work

> >

> > with at home or for him to have the choice to go to a clinic to get his Sub

Q

> >

> > started. We are finally doing well about it all. I had to insist 2 years ago

> >

> > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric RN

> >

> > so makes NO sense at all). We were REALLY struggling for many months trying

to

> >

> > figure out his refusal to do his Gamma and finally figured it out.. He

finally

> >

> > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

> >

> > did not become an issue until he was a teen and I am glad he figured it out

or

> >

> > we could have continued in a very difficult relationship throughout his teen

> >

> > years. It is important to talk to your kids about all of this so they do not

> >

> > " carry " this resentment.

> >

> >

> >

> > BARBIE

> >

> >

> >

> >

[Guest guest]

Please keep in mind....those of you considering Subq......we all have very

different experiences with our children. If you use EMLA, the " sticking " part

won't hurt.....in fact they won't feel it. IVIG was terrible for our

daughter...poor access and horrible anxiety no matter what we did. We have

always been very matter of fact with the subq infusions. Our child with IV

anxiety had a rough start....through on infusion, until she realized that it did

not hurt. We have always made it as " small " a part of our life as possible. We

put everything away in places where we did not have to look at it and be

reminded of it when we were not doing it (we have a veritable hospital hidden

behind closet doors). We have always believed in nurturing, but have been very

careful to not teach the children that infusing and scary....or bad....or even a

negative event. Instead, given that it is a painfree activity, we have always

told them that it is no different than brushing their teeth. The few times

there has been any trauma associated with it, we divert their attention.

So please consider that we all have widely different experiences. I know that,

at times, I wish I did not have to be the one sticking them.....but it is my

worry, not theirs as they don't seem to care and prefer to have me over a nurse.

We have lived with PIDD all of our lives.....all 3 of us having been diagnosed

from a very early age. My children really have no memory of life any other way

and we have helped them understand that it is part of their life....that

everyone has something they live with that they would rather not. At times, my

10 yo will say " I hate this disease " and " I wish I was normal " . I look at her

and say " tell me someone you think is normal " . She will rattle off a few names

and I will remind her of how that person is not normal (after all, are any of us

really normal?). And she will say, " you are right mom (cause aren't moms always

right too?). " It is never about infusing though. It is about having to wear a

mask in public and getting started at when her counts are down; or when she is

not well and cannot go to theater; or when we struggle with docs.......but never

about infusing.

One caveat....if you notice your child is struggling with the issues they live

with on a daily basis, be proactive.....not reactive. Talk to the hospital

child life folks or to a social worker who understands what our children live

with.....even if you notice subtle warning signs. Our children are having to

grow up far before they are ready and have to learn to cope with all the

complexities of their health issues.....from the stress of not feeling good, to

not being able to really explain how they are feeling, to the anxiety they might

have over procedures. Giving them tools to work out their emotions is so

important. They are so much stronger than most adults.....bur they are children

first and those little bodies can hide a ton of emotions that they don't know

how to express or sort through. As their parents, we have to try to comprehend

this and help them through.

Terri

> >

> >

> >

> > Barbie,

> >

> > Thank you for sharing your story. That is actually one of my biggest worries

with the sub-Q. I have no issue with starting it ( have a medical background),

but I worry about my son feeling like it is something that I am doing to him or

that I am hurting him.

> >

> >

> >

> > From: mother5590@

> > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > Subject: Re: location for ivig....

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > The BIGGEST issue for me is that my son has spent a great deal of

counseling

> >

> > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has

been

> >

> > a LONG haul trying to convince him that I do not LIKE to punish him by

> >

> > requiring all of this. I know that is NOT this way for all of our kids. But

for

> >

> > my kid it has been traumatic to not be allowed the assistance of a nurse to

work

> >

> > with at home or for him to have the choice to go to a clinic to get his Sub

Q

> >

> > started. We are finally doing well about it all. I had to insist 2 years ago

> >

> > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric RN

> >

> > so makes NO sense at all). We were REALLY struggling for many months trying

to

> >

> > figure out his refusal to do his Gamma and finally figured it out.. He

finally

> >

> > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

> >

> > did not become an issue until he was a teen and I am glad he figured it out

or

> >

> > we could have continued in a very difficult relationship throughout his teen

> >

> > years. It is important to talk to your kids about all of this so they do not

> >

> > " carry " this resentment.

> >

> >

> >

> > BARBIE

> >

> >

> >

> >

[Guest guest]

My son had sub-q when he was 12 & 13. He's been off it for 3 years and vows

that he will never do sub-q again -- he would do IVIG in the hospital.

Although he's never had IVIG (and may change his mind once he has it), here

are his reasons:

1. He hates the look of the 4 injection sites on his abdomen (self-conscious

and " feels like a freak " ).

2. Doesn't like being tied to the machine weekly.

3. Worries about it between injections -- easier to " get it over with " and

only have to deal with it every 4 weeks.

I respect all of those. I told him he's old enough to make the decision

between his doctor and the insurance company. He may feel that SCIG is a

better option. Certainly, when I look at the copay difference, I may have

other opinions, although we usually reach our maximum anyway.

Sue in NY

On Sat, Oct 16, 2010 at 9:12 AM, osdbmom <osdbmom@...> wrote:

>

>

>

> that is the reason my kids dont want to switch to subq. They say they want

> me to stay their mom and comfort them, not be the nure and stick them. Right

> now, Im respecting that. If they change their minds, they know they can

> switch. But Im not going to force them. They do great with IVIG, and have

> wonderful nurses.

> We go to our hospitals infusion room and always have. Its nice, its not

> like a regular hospital room. There are comfy recliners, games, a big flat

> screen for movies, a game cube and tons of games. Often, my daughter will

> bring beads or crafts and the nurses will sit and do those with her:)

> We used to have a problem with my sons fighting over who HAD to go first.

> Then, last yr for Christmas, we bought one boy a DSI and one boy a PSP. The

> catch is, they are only allowed to play with them on IVIG day:) now they

> just about knock each other down trying to get to their line in first, ROFL.

>

>

> valarie

> mom to 3 w/cvid

>

> >

> >

> >

> > Barbie,

> >

> > Thank you for sharing your story. That is actually one of my biggest

> worries with the sub-Q. I have no issue with starting it ( have a medical

> background), but I worry about my son feeling like it is something that I am

> doing to him or that I am hurting him.

> >

> >

> > <%40>

> > From: mother5590@...

> > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > Subject: Re: location for ivig....

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > The BIGGEST issue for me is that my son has spent a great deal of

> counseling

> >

> > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

> has been

> >

> > a LONG haul trying to convince him that I do not LIKE to punish him by

> >

> > requiring all of this. I know that is NOT this way for all of our kids.

> But for

> >

> > my kid it has been traumatic to not be allowed the assistance of a nurse

> to work

> >

> > with at home or for him to have the choice to go to a clinic to get his

> Sub Q

> >

> > started. We are finally doing well about it all. I had to insist 2 years

> ago

> >

> > that it be started by a nurse in the Immunologists office. ( I am a

> Pediatric RN

> >

> > so makes NO sense at all). We were REALLY struggling for many months

> trying to

> >

> > figure out his refusal to do his Gamma and finally figured it out.. He

> finally

> >

> > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

> This

> >

> > did not become an issue until he was a teen and I am glad he figured it

> out or

> >

> > we could have continued in a very difficult relationship throughout his

> teen

> >

> > years. It is important to talk to your kids about all of this so they do

> not

> >

> > " carry " this resentment.

> >

> >

> >

> > BARBIE

> >

> >

> >

> >

[Guest guest]

My son had sub-q when he was 12 & 13. He's been off it for 3 years and vows

that he will never do sub-q again -- he would do IVIG in the hospital.

Although he's never had IVIG (and may change his mind once he has it), here

are his reasons:

1. He hates the look of the 4 injection sites on his abdomen (self-conscious

and " feels like a freak " ).

2. Doesn't like being tied to the machine weekly.

3. Worries about it between injections -- easier to " get it over with " and

only have to deal with it every 4 weeks.

I respect all of those. I told him he's old enough to make the decision

between his doctor and the insurance company. He may feel that SCIG is a

better option. Certainly, when I look at the copay difference, I may have

other opinions, although we usually reach our maximum anyway.

Sue in NY

On Sat, Oct 16, 2010 at 9:12 AM, osdbmom <osdbmom@...> wrote:

>

>

>

> that is the reason my kids dont want to switch to subq. They say they want

> me to stay their mom and comfort them, not be the nure and stick them. Right

> now, Im respecting that. If they change their minds, they know they can

> switch. But Im not going to force them. They do great with IVIG, and have

> wonderful nurses.

> We go to our hospitals infusion room and always have. Its nice, its not

> like a regular hospital room. There are comfy recliners, games, a big flat

> screen for movies, a game cube and tons of games. Often, my daughter will

> bring beads or crafts and the nurses will sit and do those with her:)

> We used to have a problem with my sons fighting over who HAD to go first.

> Then, last yr for Christmas, we bought one boy a DSI and one boy a PSP. The

> catch is, they are only allowed to play with them on IVIG day:) now they

> just about knock each other down trying to get to their line in first, ROFL.

>

>

> valarie

> mom to 3 w/cvid

>

> >

> >

> >

> > Barbie,

> >

> > Thank you for sharing your story. That is actually one of my biggest

> worries with the sub-Q. I have no issue with starting it ( have a medical

> background), but I worry about my son feeling like it is something that I am

> doing to him or that I am hurting him.

> >

> >

> > <%40>

> > From: mother5590@...

> > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > Subject: Re: location for ivig....

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > The BIGGEST issue for me is that my son has spent a great deal of

> counseling

> >

> > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

> has been

> >

> > a LONG haul trying to convince him that I do not LIKE to punish him by

> >

> > requiring all of this. I know that is NOT this way for all of our kids.

> But for

> >

> > my kid it has been traumatic to not be allowed the assistance of a nurse

> to work

> >

> > with at home or for him to have the choice to go to a clinic to get his

> Sub Q

> >

> > started. We are finally doing well about it all. I had to insist 2 years

> ago

> >

> > that it be started by a nurse in the Immunologists office. ( I am a

> Pediatric RN

> >

> > so makes NO sense at all). We were REALLY struggling for many months

> trying to

> >

> > figure out his refusal to do his Gamma and finally figured it out.. He

> finally

> >

> > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

> This

> >

> > did not become an issue until he was a teen and I am glad he figured it

> out or

> >

> > we could have continued in a very difficult relationship throughout his

> teen

> >

> > years. It is important to talk to your kids about all of this so they do

> not

> >

> > " carry " this resentment.

> >

> >

> >

> > BARBIE

> >

> >

> >

> >

[Guest guest]

Good gosh...please forgive all the typos....one of these days, I will learn to

proof read before posting!

Terri

> > >

> > >

> > >

> > > Barbie,

> > >

> > > Thank you for sharing your story. That is actually one of my biggest

worries with the sub-Q. I have no issue with starting it ( have a medical

background), but I worry about my son feeling like it is something that I am

doing to him or that I am hurting him.

> > >

> > >

> > >

> > > From: mother5590@

> > > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > > Subject: Re: location for ivig....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > The BIGGEST issue for me is that my son has spent a great deal of

counseling

> > >

> > > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

has been

> > >

> > > a LONG haul trying to convince him that I do not LIKE to punish him by

> > >

> > > requiring all of this. I know that is NOT this way for all of our kids.

But for

> > >

> > > my kid it has been traumatic to not be allowed the assistance of a nurse

to work

> > >

> > > with at home or for him to have the choice to go to a clinic to get his

Sub Q

> > >

> > > started. We are finally doing well about it all. I had to insist 2 years

ago

> > >

> > > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric RN

> > >

> > > so makes NO sense at all). We were REALLY struggling for many months

trying to

> > >

> > > figure out his refusal to do his Gamma and finally figured it out.. He

finally

> > >

> > > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

> > >

> > > did not become an issue until he was a teen and I am glad he figured it

out or

> > >

> > > we could have continued in a very difficult relationship throughout his

teen

> > >

> > > years. It is important to talk to your kids about all of this so they do

not

> > >

> > > " carry " this resentment.

> > >

> > >

> > >

> > > BARBIE

> > >

> > >

> > >

> > >

[Guest guest]

Good gosh...please forgive all the typos....one of these days, I will learn to

proof read before posting!

Terri

> > >

> > >

> > >

> > > Barbie,

> > >

> > > Thank you for sharing your story. That is actually one of my biggest

worries with the sub-Q. I have no issue with starting it ( have a medical

background), but I worry about my son feeling like it is something that I am

doing to him or that I am hurting him.

> > >

> > >

> > >

> > > From: mother5590@

> > > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > > Subject: Re: location for ivig....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > The BIGGEST issue for me is that my son has spent a great deal of

counseling

> > >

> > > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

has been

> > >

> > > a LONG haul trying to convince him that I do not LIKE to punish him by

> > >

> > > requiring all of this. I know that is NOT this way for all of our kids.

But for

> > >

> > > my kid it has been traumatic to not be allowed the assistance of a nurse

to work

> > >

> > > with at home or for him to have the choice to go to a clinic to get his

Sub Q

> > >

> > > started. We are finally doing well about it all. I had to insist 2 years

ago

> > >

> > > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric RN

> > >

> > > so makes NO sense at all). We were REALLY struggling for many months

trying to

> > >

> > > figure out his refusal to do his Gamma and finally figured it out.. He

finally

> > >

> > > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

> > >

> > > did not become an issue until he was a teen and I am glad he figured it

out or

> > >

> > > we could have continued in a very difficult relationship throughout his

teen

> > >

> > > years. It is important to talk to your kids about all of this so they do

not

> > >

> > > " carry " this resentment.

> > >

> > >

> > >

> > > BARBIE

> > >

> > >

> > >

> > >

[Guest guest]

yes, we all have different experiences and different situations work well for

some and not others. However, my kids have had this presented to them by us and

by the nurses and by their drs....and I will leave the decisions up to them. My

kids are old enough to make choices about their care and I will not force them

to do what they dont wish to do. They are comfortable with what we do...they

love their nurses and have a great bond with them....they look forward to IG day

and know they get things they dont usually get....we did at one time have a lot

of problems with our daughters anxiety...due to many traumatic events happening

all at once with her, and then a " float " nurse rather than a regular nurse did

some things that traumatized her....we spent a year working with a psych, a

behavior therapist, and a local therapist...most of that year we did infusions

with ativan just so that she didnt vomit on the nurse or zone out and be unable

to snap out of it....we very nearly had to put her on anti anxiety meds during

this time. Now, she is comfortable with what we are doing, she loves her nurse

and has a strong bond, a good routine and no meds other than emla, she has

positive associations with IG now and does not wish to change. I will not force

her to do it when she is doing so well now.

That said, all of our kids are different. If they do well on subq and that is

how they are comfortable, then absolutely, that is what they should do. I

strongly believe that my kids should have a decision in their care, not whether

or not they should do their meds, of course, but how they do it as much as

possible, they deserve the choice.

Coincidentally, we recently got a puppy--which is a whole other story!

lol--suffice it to say the vet has joked about running an IG panel on her due to

some health issues!--but it turns out, the vet has CVID(odd, right?) and we were

talking about infusions the other day. For herself, she chooses to stick with

IVIG rather than subq for various reasons.

Im not trying to be argumentative, its not that, its just that I feel that both

choices are valid and merit consideration. We have to do what works with our own

kids and support them in those choices.

valarie

3 kids w/cvid

> > >

> > >

> > >

> > > Barbie,

> > >

> > > Thank you for sharing your story. That is actually one of my biggest

worries with the sub-Q. I have no issue with starting it ( have a medical

background), but I worry about my son feeling like it is something that I am

doing to him or that I am hurting him.

> > >

> > >

> > >

> > > From: mother5590@

> > > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > > Subject: Re: location for ivig....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > The BIGGEST issue for me is that my son has spent a great deal of

counseling

> > >

> > > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

has been

> > >

> > > a LONG haul trying to convince him that I do not LIKE to punish him by

> > >

> > > requiring all of this. I know that is NOT this way for all of our kids.

But for

> > >

> > > my kid it has been traumatic to not be allowed the assistance of a nurse

to work

> > >

> > > with at home or for him to have the choice to go to a clinic to get his

Sub Q

> > >

> > > started. We are finally doing well about it all. I had to insist 2 years

ago

> > >

> > > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric RN

> > >

> > > so makes NO sense at all). We were REALLY struggling for many months

trying to

> > >

> > > figure out his refusal to do his Gamma and finally figured it out.. He

finally

> > >

> > > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

> > >

> > > did not become an issue until he was a teen and I am glad he figured it

out or

> > >

> > > we could have continued in a very difficult relationship throughout his

teen

> > >

> > > years. It is important to talk to your kids about all of this so they do

not

> > >

> > > " carry " this resentment.

> > >

> > >

> > >

> > > BARBIE

> > >

> > >

> > >

> > >

[Guest guest]

yes, we all have different experiences and different situations work well for

some and not others. However, my kids have had this presented to them by us and

by the nurses and by their drs....and I will leave the decisions up to them. My

kids are old enough to make choices about their care and I will not force them

to do what they dont wish to do. They are comfortable with what we do...they

love their nurses and have a great bond with them....they look forward to IG day

and know they get things they dont usually get....we did at one time have a lot

of problems with our daughters anxiety...due to many traumatic events happening

all at once with her, and then a " float " nurse rather than a regular nurse did

some things that traumatized her....we spent a year working with a psych, a

behavior therapist, and a local therapist...most of that year we did infusions

with ativan just so that she didnt vomit on the nurse or zone out and be unable

to snap out of it....we very nearly had to put her on anti anxiety meds during

this time. Now, she is comfortable with what we are doing, she loves her nurse

and has a strong bond, a good routine and no meds other than emla, she has

positive associations with IG now and does not wish to change. I will not force

her to do it when she is doing so well now.

That said, all of our kids are different. If they do well on subq and that is

how they are comfortable, then absolutely, that is what they should do. I

strongly believe that my kids should have a decision in their care, not whether

or not they should do their meds, of course, but how they do it as much as

possible, they deserve the choice.

Coincidentally, we recently got a puppy--which is a whole other story!

lol--suffice it to say the vet has joked about running an IG panel on her due to

some health issues!--but it turns out, the vet has CVID(odd, right?) and we were

talking about infusions the other day. For herself, she chooses to stick with

IVIG rather than subq for various reasons.

Im not trying to be argumentative, its not that, its just that I feel that both

choices are valid and merit consideration. We have to do what works with our own

kids and support them in those choices.

valarie

3 kids w/cvid

> > >

> > >

> > >

> > > Barbie,

> > >

> > > Thank you for sharing your story. That is actually one of my biggest

worries with the sub-Q. I have no issue with starting it ( have a medical

background), but I worry about my son feeling like it is something that I am

doing to him or that I am hurting him.

> > >

> > >

> > >

> > > From: mother5590@

> > > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > > Subject: Re: location for ivig....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > The BIGGEST issue for me is that my son has spent a great deal of

counseling

> > >

> > > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

has been

> > >

> > > a LONG haul trying to convince him that I do not LIKE to punish him by

> > >

> > > requiring all of this. I know that is NOT this way for all of our kids.

But for

> > >

> > > my kid it has been traumatic to not be allowed the assistance of a nurse

to work

> > >

> > > with at home or for him to have the choice to go to a clinic to get his

Sub Q

> > >

> > > started. We are finally doing well about it all. I had to insist 2 years

ago

> > >

> > > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric RN

> > >

> > > so makes NO sense at all). We were REALLY struggling for many months

trying to

> > >

> > > figure out his refusal to do his Gamma and finally figured it out.. He

finally

> > >

> > > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

> > >

> > > did not become an issue until he was a teen and I am glad he figured it

out or

> > >

> > > we could have continued in a very difficult relationship throughout his

teen

> > >

> > > years. It is important to talk to your kids about all of this so they do

not

> > >

> > > " carry " this resentment.

> > >

> > >

> > >

> > > BARBIE

> > >

> > >

> > >

> > >

[Guest guest]

Valarie,

I think you are right. We all do what works for us and none of the decisions are

wrong at all, it's just a difference in what works for one might not work for

another.

I am really struggling with whether we are making the right decision to put

Caelan back on IVIG. My husband is very set on putting him back on. The doctor

wants him back on. I guess my hesitance is more out of the mom guilt of putting

him through all of this. On the other hand, he's already feeling crummy all the

time, constant sinus infections, chronic hives, chronic fatigue etc. He's

severely allergic to two antibiotics classes already and we've overused

penicillins so much that we are concerned about resistance and developing an

allergy to those. I also don't want any permanent damage. His last chest CT

showed some bronchiectasis and I don't want any of that to progress. It's just

so hard to know what the right thing is. I read the list of adverse event for

the IVIG and I'm freaked. I remember his really bad reaction when he was 2 and

getting IVIG and it scares me. What if something really bad happens? He would

have been better off living with a sinus infection. KWIM? Sometimes this

parenting thing is really hard and it feels like I'm stuck between a rock and a

hard place. My hope is that if we get to sub-q that I can have Caelan assist as

much as he is comfortable with and feel like he is somewhat in control of what

is happening to him.

Anyway, I think everyone here is doing what they feel is best for their child in

their given situation. We (our kids and ourselves) were dealt a hard deck to

deal with and there are no easy answers with all of this.

[Guest guest]

Valarie,

I think you are right. We all do what works for us and none of the decisions are

wrong at all, it's just a difference in what works for one might not work for

another.

I am really struggling with whether we are making the right decision to put

Caelan back on IVIG. My husband is very set on putting him back on. The doctor

wants him back on. I guess my hesitance is more out of the mom guilt of putting

him through all of this. On the other hand, he's already feeling crummy all the

time, constant sinus infections, chronic hives, chronic fatigue etc. He's

severely allergic to two antibiotics classes already and we've overused

penicillins so much that we are concerned about resistance and developing an

allergy to those. I also don't want any permanent damage. His last chest CT

showed some bronchiectasis and I don't want any of that to progress. It's just

so hard to know what the right thing is. I read the list of adverse event for

the IVIG and I'm freaked. I remember his really bad reaction when he was 2 and

getting IVIG and it scares me. What if something really bad happens? He would

have been better off living with a sinus infection. KWIM? Sometimes this

parenting thing is really hard and it feels like I'm stuck between a rock and a

hard place. My hope is that if we get to sub-q that I can have Caelan assist as

much as he is comfortable with and feel like he is somewhat in control of what

is happening to him.

Anyway, I think everyone here is doing what they feel is best for their child in

their given situation. We (our kids and ourselves) were dealt a hard deck to

deal with and there are no easy answers with all of this.

[Guest guest]

Thanks Teri for sharing your experience and knowledge with your girls. Clearly

you are doing an INCREDIBLE job working with them to understand their lives.

They sound very well adjusted and are handling their immune disorder with grace.

For some of us our kids have more emotional issues related to life in general.

I was surprised to learn years ago that kids with PIDDs can have more neuropsych

issues than the general population.( There were some studies from Rainbow

Childrens Hospital and I spoke with a Phd there about it when my son was

struggling as a preschooler). Whether this is due to genetics or due to the

bombardment of not feeling well or the consistent inclusion of hurts and medical

procedures I do not know. We have ALWAYS made it a NORMAL part of Lucas' life. (

I am a Pediatric RN so this is also my passion.) What I have been surprised

about is how my son has STILL not processed it all well. And HE has taught me

that he STILL is struggling with me poking him. I shared my experience in hopes

that others would not miss this with their kids.

BARBIE

________________________________

From: " cerdaclan@... " <tcerda@...>

Sent: Sat, October 16, 2010 7:00:22 AM

Subject: Re: location for ivig....

Please keep in mind....those of you considering Subq......we all have very

different experiences with our children. If you use EMLA, the " sticking " part

won't hurt.....in fact they won't feel it. IVIG was terrible for our

daughter...poor access and horrible anxiety no matter what we did. We have

always been very matter of fact with the subq infusions. Our child with IV

anxiety had a rough start....through on infusion, until she realized that it did

not hurt. We have always made it as " small " a part of our life as possible. We

put everything away in places where we did not have to look at it and be

reminded of it when we were not doing it (we have a veritable hospital hidden

behind closet doors). We have always believed in nurturing, but have been very

careful to not teach the children that infusing and scary....or bad....or even a

negative event. Instead, given that it is a painfree activity, we have always

told them that it is no different than brushing their teeth. The few times

there has been any trauma associated with it, we divert their attention.

So please consider that we all have widely different experiences. I know that,

at times, I wish I did not have to be the one sticking them.....but it is my

worry, not theirs as they don't seem to care and prefer to have me over a nurse.

We have lived with PIDD all of our lives.....all 3 of us having been diagnosed

from a very early age. My children really have no memory of life any other way

and we have helped them understand that it is part of their life....that

everyone has something they live with that they would rather not. At times, my

10 yo will say " I hate this disease " and " I wish I was normal " . I look at her

and say " tell me someone you think is normal " . She will rattle off a few names

and I will remind her of how that person is not normal (after all, are any of us

really normal?). And she will say, " you are right mom (cause aren't moms always

right too?). " It is never about infusing though. It is about having to wear a

mask in public and getting started at when her counts are down; or when she is

not well and cannot go to theater; or when we struggle with docs.......but never

about infusing.

One caveat....if you notice your child is struggling with the issues they live

with on a daily basis, be proactive.....not reactive. Talk to the hospital

child life folks or to a social worker who understands what our children live

with.....even if you notice subtle warning signs. Our children are having to

grow up far before they are ready and have to learn to cope with all the

complexities of their health issues.....from the stress of not feeling good, to

not being able to really explain how they are feeling, to the anxiety they might

have over procedures. Giving them tools to work out their emotions is so

important. They are so much stronger than most adults.....bur they are children

first and those little bodies can hide a ton of emotions that they don't know

how to express or sort through. As their parents, we have to try to comprehend

this and help them through.

Terri

> >

> >

> >

> > Barbie,

> >

> > Thank you for sharing your story. That is actually one of my biggest worries

>with the sub-Q. I have no issue with starting it ( have a medical background),

>but I worry about my son feeling like it is something that I am doing to him or

>that I am hurting him.

>

> >

> >

> >

> > From: mother5590@

> > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > Subject: Re: location for ivig....

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > The BIGGEST issue for me is that my son has spent a great deal of

>counseling

>

> >

> > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has

>been

>

> >

> > a LONG haul trying to convince him that I do not LIKE to punish him by

> >

> > requiring all of this. I know that is NOT this way for all of our kids. But

>for

>

> >

> > my kid it has been traumatic to not be allowed the assistance of a nurse to

>work

>

> >

> > with at home or for him to have the choice to go to a clinic to get his Sub

Q

>

> >

> > started. We are finally doing well about it all. I had to insist 2 years ago

> >

> > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric

>RN

>

> >

> > so makes NO sense at all). We were REALLY struggling for many months trying

>to

>

> >

> > figure out his refusal to do his Gamma and finally figured it out.. He

>finally

>

> >

> > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

>This

>

> >

> > did not become an issue until he was a teen and I am glad he figured it out

>or

>

> >

> > we could have continued in a very difficult relationship throughout his teen

> >

> > years. It is important to talk to your kids about all of this so they do not

> >

> > " carry " this resentment.

> >

> >

> >

> > BARBIE

> >

> >

> >

> >

[Guest guest]

Thanks Teri for sharing your experience and knowledge with your girls. Clearly

you are doing an INCREDIBLE job working with them to understand their lives.

They sound very well adjusted and are handling their immune disorder with grace.

For some of us our kids have more emotional issues related to life in general.

I was surprised to learn years ago that kids with PIDDs can have more neuropsych

issues than the general population.( There were some studies from Rainbow

Childrens Hospital and I spoke with a Phd there about it when my son was

struggling as a preschooler). Whether this is due to genetics or due to the

bombardment of not feeling well or the consistent inclusion of hurts and medical

procedures I do not know. We have ALWAYS made it a NORMAL part of Lucas' life. (

I am a Pediatric RN so this is also my passion.) What I have been surprised

about is how my son has STILL not processed it all well. And HE has taught me

that he STILL is struggling with me poking him. I shared my experience in hopes

that others would not miss this with their kids.

BARBIE

________________________________

From: " cerdaclan@... " <tcerda@...>

Sent: Sat, October 16, 2010 7:00:22 AM

Subject: Re: location for ivig....

Please keep in mind....those of you considering Subq......we all have very

different experiences with our children. If you use EMLA, the " sticking " part

won't hurt.....in fact they won't feel it. IVIG was terrible for our

daughter...poor access and horrible anxiety no matter what we did. We have

always been very matter of fact with the subq infusions. Our child with IV

anxiety had a rough start....through on infusion, until she realized that it did

not hurt. We have always made it as " small " a part of our life as possible. We

put everything away in places where we did not have to look at it and be

reminded of it when we were not doing it (we have a veritable hospital hidden

behind closet doors). We have always believed in nurturing, but have been very

careful to not teach the children that infusing and scary....or bad....or even a

negative event. Instead, given that it is a painfree activity, we have always

told them that it is no different than brushing their teeth. The few times

there has been any trauma associated with it, we divert their attention.

So please consider that we all have widely different experiences. I know that,

at times, I wish I did not have to be the one sticking them.....but it is my

worry, not theirs as they don't seem to care and prefer to have me over a nurse.

We have lived with PIDD all of our lives.....all 3 of us having been diagnosed

from a very early age. My children really have no memory of life any other way

and we have helped them understand that it is part of their life....that

everyone has something they live with that they would rather not. At times, my

10 yo will say " I hate this disease " and " I wish I was normal " . I look at her

and say " tell me someone you think is normal " . She will rattle off a few names

and I will remind her of how that person is not normal (after all, are any of us

really normal?). And she will say, " you are right mom (cause aren't moms always

right too?). " It is never about infusing though. It is about having to wear a

mask in public and getting started at when her counts are down; or when she is

not well and cannot go to theater; or when we struggle with docs.......but never

about infusing.

One caveat....if you notice your child is struggling with the issues they live

with on a daily basis, be proactive.....not reactive. Talk to the hospital

child life folks or to a social worker who understands what our children live

with.....even if you notice subtle warning signs. Our children are having to

grow up far before they are ready and have to learn to cope with all the

complexities of their health issues.....from the stress of not feeling good, to

not being able to really explain how they are feeling, to the anxiety they might

have over procedures. Giving them tools to work out their emotions is so

important. They are so much stronger than most adults.....bur they are children

first and those little bodies can hide a ton of emotions that they don't know

how to express or sort through. As their parents, we have to try to comprehend

this and help them through.

Terri

> >

> >

> >

> > Barbie,

> >

> > Thank you for sharing your story. That is actually one of my biggest worries

>with the sub-Q. I have no issue with starting it ( have a medical background),

>but I worry about my son feeling like it is something that I am doing to him or

>that I am hurting him.

>

> >

> >

> >

> > From: mother5590@

> > Date: Fri, 15 Oct 2010 19:42:16 -0700

> > Subject: Re: location for ivig....

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > The BIGGEST issue for me is that my son has spent a great deal of

>counseling

>

> >

> > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has

>been

>

> >

> > a LONG haul trying to convince him that I do not LIKE to punish him by

> >

> > requiring all of this. I know that is NOT this way for all of our kids. But

>for

>

> >

> > my kid it has been traumatic to not be allowed the assistance of a nurse to

>work

>

> >

> > with at home or for him to have the choice to go to a clinic to get his Sub

Q

>

> >

> > started. We are finally doing well about it all. I had to insist 2 years ago

> >

> > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric

>RN

>

> >

> > so makes NO sense at all). We were REALLY struggling for many months trying

>to

>

> >

> > figure out his refusal to do his Gamma and finally figured it out.. He

>finally

>

> >

> > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

>This

>

> >

> > did not become an issue until he was a teen and I am glad he figured it out

>or

>

> >

> > we could have continued in a very difficult relationship throughout his teen

> >

> > years. It is important to talk to your kids about all of this so they do not

> >

> > " carry " this resentment.

> >

> >

> >

> > BARBIE

> >

> >

> >

> >

[Guest guest]

I know what you mean...when my youngest son was smaller, he had a rigors

reaction during infusion and it scared the crap out of me!!

When I have to make medical decisions...I have come to a place where I try to

think 20 yrs ahead....in twenty years, will my child wish I would have done

different? It was so hard for me to make the decision for IG...I was on this

list when we started and four yrs ago there are probably tons of posts of me

flipping out about starting. In the end, I decided that:

1. I already knew what life was like W/O IVIG...how could we not try and see how

life would be WITH it?

2. I would hate for my kids to come to me as adults and ask why I let them be

sick all through their childhood when there was something we could have at least

tried. We may try and it may not work...but I least I can tell them I tried

every option we had.

My kids health has really improved since being on IVIG. We trialed off once for

several months and it was awful. It really reminded me what IG does for us. My

kids have a " normal " life now...and one day a month, they skip school, get pop

and candy bars for breakfast(LOL), play games and make crafts and also happen to

get an IV for a couple of hrs...which is totally worth trading for the constant

illnesses, abx and steroids we used to do.

good luck with your decision,

valarie

>

>

> Valarie,

>

> I think you are right. We all do what works for us and none of the decisions

are wrong at all, it's just a difference in what works for one might not work

for another.

>

> I am really struggling with whether we are making the right decision to put

Caelan back on IVIG. My husband is very set on putting him back on. The doctor

wants him back on. I guess my hesitance is more out of the mom guilt of putting

him through all of this. On the other hand, he's already feeling crummy all the

time, constant sinus infections, chronic hives, chronic fatigue etc. He's

severely allergic to two antibiotics classes already and we've overused

penicillins so much that we are concerned about resistance and developing an

allergy to those. I also don't want any permanent damage. His last chest CT

showed some bronchiectasis and I don't want any of that to progress. It's just

so hard to know what the right thing is. I read the list of adverse event for

the IVIG and I'm freaked. I remember his really bad reaction when he was 2 and

getting IVIG and it scares me. What if something really bad happens? He would

have been better off living with a sinus infection. KWIM? Sometimes this

parenting thing is really hard and it feels like I'm stuck between a rock and a

hard place. My hope is that if we get to sub-q that I can have Caelan assist as

much as he is comfortable with and feel like he is somewhat in control of what

is happening to him.

>

> Anyway, I think everyone here is doing what they feel is best for their child

in their given situation. We (our kids and ourselves) were dealt a hard deck to

deal with and there are no easy answers with all of this.

>

>

>

>

>

[Guest guest]

I know what you mean...when my youngest son was smaller, he had a rigors

reaction during infusion and it scared the crap out of me!!

When I have to make medical decisions...I have come to a place where I try to

think 20 yrs ahead....in twenty years, will my child wish I would have done

different? It was so hard for me to make the decision for IG...I was on this

list when we started and four yrs ago there are probably tons of posts of me

flipping out about starting. In the end, I decided that:

1. I already knew what life was like W/O IVIG...how could we not try and see how

life would be WITH it?

2. I would hate for my kids to come to me as adults and ask why I let them be

sick all through their childhood when there was something we could have at least

tried. We may try and it may not work...but I least I can tell them I tried

every option we had.

My kids health has really improved since being on IVIG. We trialed off once for

several months and it was awful. It really reminded me what IG does for us. My

kids have a " normal " life now...and one day a month, they skip school, get pop

and candy bars for breakfast(LOL), play games and make crafts and also happen to

get an IV for a couple of hrs...which is totally worth trading for the constant

illnesses, abx and steroids we used to do.

good luck with your decision,

valarie

>

>

> Valarie,

>

> I think you are right. We all do what works for us and none of the decisions

are wrong at all, it's just a difference in what works for one might not work

for another.

>

> I am really struggling with whether we are making the right decision to put

Caelan back on IVIG. My husband is very set on putting him back on. The doctor

wants him back on. I guess my hesitance is more out of the mom guilt of putting

him through all of this. On the other hand, he's already feeling crummy all the

time, constant sinus infections, chronic hives, chronic fatigue etc. He's

severely allergic to two antibiotics classes already and we've overused

penicillins so much that we are concerned about resistance and developing an

allergy to those. I also don't want any permanent damage. His last chest CT

showed some bronchiectasis and I don't want any of that to progress. It's just

so hard to know what the right thing is. I read the list of adverse event for

the IVIG and I'm freaked. I remember his really bad reaction when he was 2 and

getting IVIG and it scares me. What if something really bad happens? He would

have been better off living with a sinus infection. KWIM? Sometimes this

parenting thing is really hard and it feels like I'm stuck between a rock and a

hard place. My hope is that if we get to sub-q that I can have Caelan assist as

much as he is comfortable with and feel like he is somewhat in control of what

is happening to him.

>

> Anyway, I think everyone here is doing what they feel is best for their child

in their given situation. We (our kids and ourselves) were dealt a hard deck to

deal with and there are no easy answers with all of this.

>

>

>

>

>

[Guest guest]

,

It TRULY is an individual decision about which way you go whether it is IV or

Sub Q, Access to veins and side effects is a HUGE part of which way to go. In my

son's case he crashed the 3rd week with fatigue so the Sub Q has kept his levels

better therefore reducing his fatigue and illnesses. You will figure it out just

know this is an OPPORTUNITY to get to know your child better. I have 2 children

with chronic health issues and I feel I am closer to them because of the

challenges we have faced. I am THANKFUL to have the choice to give my son Gamma.

We truly are blessed.

BARBIE

________________________________

From: osdbmom <osdbmom@...>

Sent: Sat, October 16, 2010 9:59:45 AM

Subject: Re: location for ivig....

I know what you mean...when my youngest son was smaller, he had a rigors

reaction during infusion and it scared the crap out of me!!

When I have to make medical decisions...I have come to a place where I try to

think 20 yrs ahead....in twenty years, will my child wish I would have done

different? It was so hard for me to make the decision for IG...I was on this

list when we started and four yrs ago there are probably tons of posts of me

flipping out about starting. In the end, I decided that:

1. I already knew what life was like W/O IVIG...how could we not try and see how

life would be WITH it?

2. I would hate for my kids to come to me as adults and ask why I let them be

sick all through their childhood when there was something we could have at least

tried. We may try and it may not work...but I least I can tell them I tried

every option we had.

My kids health has really improved since being on IVIG. We trialed off once for

several months and it was awful. It really reminded me what IG does for us. My

kids have a " normal " life now...and one day a month, they skip school, get pop

and candy bars for breakfast(LOL), play games and make crafts and also happen to

get an IV for a couple of hrs...which is totally worth trading for the constant

illnesses, abx and steroids we used to do.

good luck with your decision,

valarie

>

>

> Valarie,

>

> I think you are right. We all do what works for us and none of the decisions

>are wrong at all, it's just a difference in what works for one might not work

>for another.

>

>

> I am really struggling with whether we are making the right decision to put

>Caelan back on IVIG. My husband is very set on putting him back on. The doctor

>wants him back on. I guess my hesitance is more out of the mom guilt of putting

>him through all of this. On the other hand, he's already feeling crummy all the

>time, constant sinus infections, chronic hives, chronic fatigue etc. He's

>severely allergic to two antibiotics classes already and we've overused

>penicillins so much that we are concerned about resistance and developing an

>allergy to those. I also don't want any permanent damage. His last chest CT

>showed some bronchiectasis and I don't want any of that to progress. It's just

>so hard to know what the right thing is. I read the list of adverse event for

>the IVIG and I'm freaked. I remember his really bad reaction when he was 2 and

>getting IVIG and it scares me. What if something really bad happens? He would

>have been better off living with a sinus infection. KWIM? Sometimes this

>parenting thing is really hard and it feels like I'm stuck between a rock and a

>hard place. My hope is that if we get to sub-q that I can have Caelan assist as

>much as he is comfortable with and feel like he is somewhat in control of what

>is happening to him.

>

>

> Anyway, I think everyone here is doing what they feel is best for their child

>in their given situation. We (our kids and ourselves) were dealt a hard deck to

>deal with and there are no easy answers with all of this.

>

>

>

>

>

[Guest guest]

,

It TRULY is an individual decision about which way you go whether it is IV or

Sub Q, Access to veins and side effects is a HUGE part of which way to go. In my

son's case he crashed the 3rd week with fatigue so the Sub Q has kept his levels

better therefore reducing his fatigue and illnesses. You will figure it out just

know this is an OPPORTUNITY to get to know your child better. I have 2 children

with chronic health issues and I feel I am closer to them because of the

challenges we have faced. I am THANKFUL to have the choice to give my son Gamma.

We truly are blessed.

BARBIE

________________________________

From: osdbmom <osdbmom@...>

Sent: Sat, October 16, 2010 9:59:45 AM

Subject: Re: location for ivig....

I know what you mean...when my youngest son was smaller, he had a rigors

reaction during infusion and it scared the crap out of me!!

When I have to make medical decisions...I have come to a place where I try to

think 20 yrs ahead....in twenty years, will my child wish I would have done

different? It was so hard for me to make the decision for IG...I was on this

list when we started and four yrs ago there are probably tons of posts of me

flipping out about starting. In the end, I decided that:

1. I already knew what life was like W/O IVIG...how could we not try and see how

life would be WITH it?

2. I would hate for my kids to come to me as adults and ask why I let them be

sick all through their childhood when there was something we could have at least

tried. We may try and it may not work...but I least I can tell them I tried

every option we had.

My kids health has really improved since being on IVIG. We trialed off once for

several months and it was awful. It really reminded me what IG does for us. My

kids have a " normal " life now...and one day a month, they skip school, get pop

and candy bars for breakfast(LOL), play games and make crafts and also happen to

get an IV for a couple of hrs...which is totally worth trading for the constant

illnesses, abx and steroids we used to do.

good luck with your decision,

valarie

>

>

> Valarie,

>

> I think you are right. We all do what works for us and none of the decisions

>are wrong at all, it's just a difference in what works for one might not work

>for another.

>

>

> I am really struggling with whether we are making the right decision to put

>Caelan back on IVIG. My husband is very set on putting him back on. The doctor

>wants him back on. I guess my hesitance is more out of the mom guilt of putting

>him through all of this. On the other hand, he's already feeling crummy all the

>time, constant sinus infections, chronic hives, chronic fatigue etc. He's

>severely allergic to two antibiotics classes already and we've overused

>penicillins so much that we are concerned about resistance and developing an

>allergy to those. I also don't want any permanent damage. His last chest CT

>showed some bronchiectasis and I don't want any of that to progress. It's just

>so hard to know what the right thing is. I read the list of adverse event for

>the IVIG and I'm freaked. I remember his really bad reaction when he was 2 and

>getting IVIG and it scares me. What if something really bad happens? He would

>have been better off living with a sinus infection. KWIM? Sometimes this

>parenting thing is really hard and it feels like I'm stuck between a rock and a

>hard place. My hope is that if we get to sub-q that I can have Caelan assist as

>much as he is comfortable with and feel like he is somewhat in control of what

>is happening to him.

>

>

> Anyway, I think everyone here is doing what they feel is best for their child

>in their given situation. We (our kids and ourselves) were dealt a hard deck to

>deal with and there are no easy answers with all of this.

>

>

>

>

>

[Guest guest]

, our German Shepherd has doggy PIDD. We laughed so hard when the vet

told us. He has granulo...what ya ma call it.

Terri

Sent from my Verizon Wireless BlackBerry

Re: location for ivig....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > The BIGGEST issue for me is that my son has spent a great deal of

counseling

> > >

> > > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

has been

> > >

> > > a LONG haul trying to convince him that I do not LIKE to punish him by

> > >

> > > requiring all of this. I know that is NOT this way for all of our kids.

But for

> > >

> > > my kid it has been traumatic to not be allowed the assistance of a nurse

to work

> > >

> > > with at home or for him to have the choice to go to a clinic to get his

Sub Q

> > >

> > > started. We are finally doing well about it all. I had to insist 2 years

ago

> > >

> > > that it be started by a nurse in the Immunologists office. ( I am a

Pediatric RN

> > >

> > > so makes NO sense at all). We were REALLY struggling for many months

trying to

> > >

> > > figure out his refusal to do his Gamma and finally figured it out.. He

finally

> > >

> > > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

This

> > >

> > > did not become an issue until he was a teen and I am glad he figured it

out or

> > >

> > > we could have continued in a very difficult relationship throughout his

teen

> > >

> > > years. It is important to talk to your kids about all of this so they do

not

> > >

> > > " carry " this resentment.

> > >

> > >

> > >

> > > BARBIE

> > >

> > >

> > >

> > >

[Guest guest]

we had a cat with an immune disorder. The vet had me give him sub Q left over

gamma one time. LOL

BARBIE

________________________________

From: Terri Cerda <tcerda@...>

Sent: Sat, October 16, 2010 10:14:50 AM

Subject: Re: Re: location for ivig....

, our German Shepherd has doggy PIDD. We laughed so hard when the vet

told us. He has granulo...what ya ma call it.

Terri

Sent from my Verizon Wireless BlackBerry

Re: location for ivig....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > The BIGGEST issue for me is that my son has spent a great deal of

>counseling

>

> > >

> > > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

has

>been

>

> > >

> > > a LONG haul trying to convince him that I do not LIKE to punish him by

> > >

> > > requiring all of this. I know that is NOT this way for all of our kids.

But

>for

>

> > >

> > > my kid it has been traumatic to not be allowed the assistance of a nurse

to

>work

>

> > >

> > > with at home or for him to have the choice to go to a clinic to get his

Sub

>Q

>

> > >

> > > started. We are finally doing well about it all. I had to insist 2 years

>ago

>

> > >

> > > that it be started by a nurse in the Immunologists office. ( I am a

>Pediatric RN

>

> > >

> > > so makes NO sense at all). We were REALLY struggling for many months

trying

>to

>

> > >

> > > figure out his refusal to do his Gamma and finally figured it out.. He

>finally

>

> > >

> > > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

>This

>

> > >

> > > did not become an issue until he was a teen and I am glad he figured it

out

>or

>

> > >

> > > we could have continued in a very difficult relationship throughout his

>teen

>

> > >

> > > years. It is important to talk to your kids about all of this so they do

>not

>

> > >

> > > " carry " this resentment.

> > >

> > >

> > >

> > > BARBIE

> > >

> > >

> > >

> > >

[Guest guest]

we had a cat with an immune disorder. The vet had me give him sub Q left over

gamma one time. LOL

BARBIE

________________________________

From: Terri Cerda <tcerda@...>

Sent: Sat, October 16, 2010 10:14:50 AM

Subject: Re: Re: location for ivig....

, our German Shepherd has doggy PIDD. We laughed so hard when the vet

told us. He has granulo...what ya ma call it.

Terri

Sent from my Verizon Wireless BlackBerry

Re: location for ivig....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > The BIGGEST issue for me is that my son has spent a great deal of

>counseling

>

> > >

> > > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It

has

>been

>

> > >

> > > a LONG haul trying to convince him that I do not LIKE to punish him by

> > >

> > > requiring all of this. I know that is NOT this way for all of our kids.

But

>for

>

> > >

> > > my kid it has been traumatic to not be allowed the assistance of a nurse

to

>work

>

> > >

> > > with at home or for him to have the choice to go to a clinic to get his

Sub

>Q

>

> > >

> > > started. We are finally doing well about it all. I had to insist 2 years

>ago

>

> > >

> > > that it be started by a nurse in the Immunologists office. ( I am a

>Pediatric RN

>

> > >

> > > so makes NO sense at all). We were REALLY struggling for many months

trying

>to

>

> > >

> > > figure out his refusal to do his Gamma and finally figured it out.. He

>finally

>

> > >

> > > told me at 12 that a mom is suppose to HUG you and love you not Poke you.

>This

>

> > >

> > > did not become an issue until he was a teen and I am glad he figured it

out

>or

>

> > >

> > > we could have continued in a very difficult relationship throughout his

>teen

>

> > >

> > > years. It is important to talk to your kids about all of this so they do

>not

>

> > >

> > > " carry " this resentment.

> > >

> > >

> > >

> > > BARBIE

> > >

> > >

> > >

> > >

[Guest guest]

, I want you to know that what you are going through is something I have

gone through....even now....after years of Ig replacement....going off and now

what inevitably seems to be starting back up....I hate it. As mentioned in the

previous posts, I think it is harder for us than it is for our kids....we are

moms and don't want them to suffer. It is that never ending place of " darned if

I do and darned if I don't. " It is a tough spot to be in. Just know you have

support here to help you through.

Terri

Sent from my Verizon Wireless BlackBerry

RE: Re: location for ivig....

Valarie,

I think you are right. We all do what works for us and none of the decisions are

wrong at all, it's just a difference in what works for one might not work for

another.

I am really struggling with whether we are making the right decision to put

Caelan back on IVIG. My husband is very set on putting him back on. The doctor

wants him back on. I guess my hesitance is more out of the mom guilt of putting

him through all of this. On the other hand, he's already feeling crummy all the

time, constant sinus infections, chronic hives, chronic fatigue etc. He's

severely allergic to two antibiotics classes already and we've overused

penicillins so much that we are concerned about resistance and developing an

allergy to those. I also don't want any permanent damage. His last chest CT

showed some bronchiectasis and I don't want any of that to progress. It's just

so hard to know what the right thing is. I read the list of adverse event for

the IVIG and I'm freaked. I remember his really bad reaction when he was 2 and

getting IVIG and it scares me. What if something really bad happens? He would

have been better off living with a sinus infection. KWIM? Sometimes this

parenting thing is really hard and it feels like I'm stuck between a rock and a

hard place. My hope is that if we get to sub-q that I can have Caelan assist as

much as he is comfortable with and feel like he is somewhat in control of what

is happening to him.

Anyway, I think everyone here is doing what they feel is best for their child in

their given situation. We (our kids and ourselves) were dealt a hard deck to

deal with and there are no easy answers with all of this.