Re: Immuno Appointment on Friday

[Guest guest]

Sandi, I am so sorry. I just can't believe it! How long is he going to keep

Bri off, did he give you a date? I know he probably wouldn't consider calling

the IDF huh? I wish you could find another doctor. Have you thought about

that? Anyone? Your Ped? I will keep praying for this to work out.

I'll talk at you later the baby is crying! (((Sandi)))

Janet, mom to Brittany CVID age 15

[Guest guest]

In a message dated 3/27/2006 5:20:13 PM Pacific Standard Time,

BBsmart2@... writes:

How long is he going to keep

Bri off, did he give you a date? I know he probably wouldn't consider calling

the IDF huh? I wish you could find another doctor. Have you thought about

that? Anyone? Your Ped?

Janet,

He plans on keeping Bri off for the summer. He said if Bri gets sick, he

can go back on. But then he backtracked on that saying if he had something

" life threatening " like Pneumonia, he could go back on IVIG. I brought up the

fact that Bri would have to have surgery for another ear tube if he is off

IVIG--he said to call him if he's sick. He kept saying, " You're talking about

the

old , the one without IVIG. " HUH?? I thought that's what we were

talking about: taking him off IVIG??

I have tried every avenue to find another Immuno, but none of the others in

this town (not that there are that many) accept Bri's insurance. We are

basically stuck. I have asked the Ped if he would consider it (since he is the

one treating Bri anyway for infections) but he was clearly uncomfortable.

Thanks!

Sandi

[Guest guest]

In a message dated 3/27/2006 8:25:35 PM Pacific Standard Time,

catholicmomof3@... writes:

I am sorry that it did not go well.

Thanks, Pattie, me, too.

Sandi

[Guest guest]

Sandi, I'm sorry. I sure would like to see a copy of that paper that

states that kids only need IVIG for 2 years. Sounds really fishy to me.

That runs counter to everything we know about PID so far!

It's totally your call, but I would certainly recommend having a plan in

place to get him back without ANY delays if he gets sick.

It might be worth it to see a top level Immunologist just once so that

he can give instructions to your pediatrician. But if the old

immunologist is in the same group -- the pediatrician may not agree to

that. I HATE it when they put politics and friendships above our kids.

You know that we opted to by-pass the immunologist in our area because

they didn't seem to have Katy's best interests at heart and her

pediatrician did. So, we asked her to call the shots. She was great

about it. We just kept her supplied with all the latest and greatest

from IDF and she followed their recommendations with just consults with

other immunologists when she had a question. I don't remember what

part of the country you are located in so I can't say how far you would

have to travel.....

How does feel about all this? I hate it that he's being bounced

around. I think though, at 13, I would take some cues from him as to

whether he wants to do this or not. Is he thinking he can go off safely?

Anyway -- I'm hurting for you tonight. Sorry you have to go through it.

Wouldn't it be nice if all the doctors in the world understood this

stuff like they do the measles or something???????

We can hope for future generations!!!!

In His service,

dale

[Guest guest]

I am sorry that it did not go well.

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

_____

[Guest guest]

I am sorry that it did not go well.

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

_____

[Guest guest]

I really hope and pray that he don't get to terribly sick while this

smarty-pants tries things his way and it don't matter what mom and other

docs have said.

CAssei

sassykay59@... wrote:

> Hello Everyone,

> I've needed this past weekend just to sit with my feeling about our

> visit

> with Bri's Immuno on Friday afternoon.

> Basically, he refused to listen to me and is taking Bri off IVIG for

> the

> summer. When he brought up the " fact " that summer is the best time, I

> told him

> that Bri's infections have never cared if it was summer or not. In

> fact, I've

> never known another person who has had strep as many times as Bri in the

> summer--ear infections, too.

> He then proceeded to tell us (Bri was in the room at the time) that at

> Bri's age, he has a 90% chance of not needing IVIG any further. This

> really

> frosted my Wheaties because I didn't want to give Bri any false hope.

> I told the

> Immuno that I would believe it when I see it. He told me I was being

> pessimistic. I told him that I wasn't pessimistic, but have lived

> with Bri for 13

> years and watched him be infected constantly for 7 of those years. I

> think I'm

> more of a realist at this point. He halfway listened.

> Then, I brought up Bri's stamina (or lack thereof) issue. I felt

> like if we

> were going to take him off for the summer, he wouldn't be able to go

> back to

> school full time in the fall like we had planned. He said that

> exhaustion

> didn't necessarily have anything to do with the immune system!!!

> Then, he

> contradicted himself and told me the girl in the next room (who was

> receiving IVIG

> at the time) also struggled with stamina. I have seen my very active

> child

> become chronically ill and then...TIRED. You will simply never

> convince me that

> it is anything other than his immune system. I did tell the Immuno

> that Bri

> had just had his Cardiac checkup and he is doing great--so he wouldn't

> even

> think of blaming his cardiac status.

> The one positive thing that I did accomplish was to talk him into

> letting

> me do SubQ if/when Bri goes back on. He said it was " more pokes " but I

> reminded him that it would be less painful, cause less scar tissue in

> the veins and

> Bri wouldn't be exposed to bugs at the hospital each month and miss

> school. He

> agreed. FINALLY. Of course, he is thinking there is only a 10%

> chance that

> we'll be going back on.

> This Immuno's mentor was Dr. Soronsen who has published papers on

> the need

> for IVIG for only two years in a percentage of patients. Apparently,

> this is

> what he's basing his 90% figure on.

> After all of this, I had to take my son to dinner and tell him that

> 90% was

> probably not at all accurate. I HATED to do this, but refuse to give him

> false hope. He's lived through too much to let him believe a

> misstatement at

> this point. He was not too happy but took it better than I expected.

> After all,

> going to the hospital once a month is not too high on his list of

> priorities

> at age 13!!!

> Thank you all for your support!

>

>

>

> Sandi, Mom to --age 13--CVID

>

>

>

[Guest guest]

" ...refused to listen to me...He told me I was being

pessimistic...but have lived with Bri for 13

years and watched him be infected constantly...He halfway listened...He said

that exhaustion

didn't necessarily have anything to do with the immune system...told me the girl

in the next room (who was receiving IVIG at the time) also struggled with

stamina...do SubQ if/when Bri goes back on...he said it was " more pokes " ... "

Sandi -

You have gone to great effort to be reasonable and explain things to Bri's

doc. It is important to give him a chance, obviously, but it is often futile to

try to reason with an irrational person. Some fruit-loops will " listen " to

paper trails/letters, but not always.

I could not put my child's fate in the hands of anyone that does not listen,

makes unilaterial decisions, and manipulates information so that it serves their

own ideology. Sadly, some docs are still using their own personal biases (and

gossip in the halls) instead of scientifically grounded protocols to practice

medicine.

You said that Bri's doc has not been monitoring him closely (e.g., IgG/IgM

levels/function) -- yet is making a life altering decision for him. I can not

see how this is practicing responsible medicine.

If Bri is going off of IVIG, and you are forced to work with this doc, than he

needs to be closely monitored. Make sure that there is a CONCRETE plan and

proper tests are run. Usually, past behavior on the part of the doc predicts

future behavior so it would surprise me if he flaked on testing. From what you

said, he may very well rely on morbidity instead of laboratory data.

Bri needs to get properly monitored -- perhaps call the IDF for advice about

how to do this. Other docs can order blood as well. This is an opportunity to

see what the heck is really going on with his immune system. Don't let Bri's

doc convolute the process.

We are all hoping for the best and that Bri is part of that special 10% (still

praying for Katy, Em, Becki's kiddo and others pumpkins here) but, based on

Bri's history, you have to get your ducks in a row and prepare for the worst.

You are not being pessimistic; this is called being a responsible parent. By

your docs logic, I am also a " pessimist " because I live in So. California -- I

am preparing for an earthquake that may never happen. Because you have been

labeled as a " pessimist " it may impact the way that Bri's doc treats him and

you. You are in a bit of a double bind here. If you pretend that everything is

just peaches, the doc will be pleased but Bri could get hurt.

Ultimately, you are his best advocate and have to do what it right for your

child. I hope that you have already been in touch with advocates at the IDF.

Hoping for the best,

mom to CVIDer

[Guest guest]

Sandi, My heart goes out to you. How crushing to be told you are

being pessimistic about 's health! As parents we must look out

for our children's best interest and given the past history with

, how could you not question the very real possibility of

future infections and lack of stamina? We are the ones living with

the PIDers -- we feel the pain. The doctors do not, so I think some

lack the empathy needed to properly communicate with parents. I

pray that all works out in 's favor -- and I must agree with

Dale, make sure you have a SOLID PLAN in place with that immuno or

your pediatrician.

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def,

GERD, possible Celiac)

-- In , sassykay59@... wrote:

>

> Hello Everyone,

> I've needed this past weekend just to sit with my feeling about

our visit

> with Bri's Immuno on Friday afternoon.

> Basically, he refused to listen to me and is taking Bri off IVIG

for the

> summer. When he brought up the " fact " that summer is the best

time, I told him

> that Bri's infections have never cared if it was summer or not.

In fact, I've

> never known another person who has had strep as many times as Bri

in the

> summer--ear infections, too.

> He then proceeded to tell us (Bri was in the room at the time)

that at

> Bri's age, he has a 90% chance of not needing IVIG any further.

This really

> frosted my Wheaties because I didn't want to give Bri any false

hope. I told the

> Immuno that I would believe it when I see it. He told me I was

being

> pessimistic. I told him that I wasn't pessimistic, but have lived

with Bri for 13

> years and watched him be infected constantly for 7 of those

years. I think I'm

> more of a realist at this point. He halfway listened.

> Then, I brought up Bri's stamina (or lack thereof) issue. I felt

like if we

> were going to take him off for the summer, he wouldn't be able to

go back to

> school full time in the fall like we had planned. He said that

exhaustion

> didn't necessarily have anything to do with the immune system!!!

Then, he

> contradicted himself and told me the girl in the next room (who

was receiving IVIG

> at the time) also struggled with stamina. I have seen my very

active child

> become chronically ill and then...TIRED. You will simply never

convince me that

> it is anything other than his immune system. I did tell the Immuno

that Bri

> had just had his Cardiac checkup and he is doing great--so he

wouldn't even

> think of blaming his cardiac status.

> The one positive thing that I did accomplish was to talk him

into letting

> me do SubQ if/when Bri goes back on. He said it was " more pokes "

but I

> reminded him that it would be less painful, cause less scar tissue

in the veins and

> Bri wouldn't be exposed to bugs at the hospital each month and

miss school. He

> agreed. FINALLY. Of course, he is thinking there is only a 10%

chance that

> we'll be going back on.

> This Immuno's mentor was Dr. Soronsen who has published papers

on the need

> for IVIG for only two years in a percentage of patients.

Apparently, this is

> what he's basing his 90% figure on.

> After all of this, I had to take my son to dinner and tell him

that 90% was

> probably not at all accurate. I HATED to do this, but refuse to

give him

> false hope. He's lived through too much to let him believe a

misstatement at

> this point. He was not too happy but took it better than I

expected. After all,

> going to the hospital once a month is not too high on his list of

priorities

> at age 13!!!

> Thank you all for your support!

>

>

>

> Sandi, Mom to --age 13--CVID

>

>

>

[Guest guest]

In a message dated 3/28/2006 11:46:47 AM Pacific Standard Time,

nurse2008@... writes:

I really hope and pray that he don't get to terribly sick while this

smarty-pants tries things his way and it don't matter what mom and other

docs have said.

Cassie,

The only thing keeping me going right now is that Bri doesn't get life

threatening infections--usually. He gets sinus, ear and strep infections--but

constantly. The strep can become life threatening, of course, because he is

also

a cardiac kid. But most of the infections

do not result in hospitalizations. What I am concerned about is his

spirit--he has just blossomed during this time of being well and I'm not willing

to

let that go!! He's always been amazing, but so sick--it's been awesome to see

everything he can do when well.

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 3/28/2006 1:25:28 PM Pacific Standard Time,

dietdoc@... writes:

Ultimately, you are his best advocate and have to do what it right for your

child. I hope that you have already been in touch with advocates at the IDF.

,

I have spoken with them before, but I will be calling again--very soon!!

This is an excellent idea. Bri has an excellent Ped who also thinks like we do

about this Immuno, but he also realizes that we unfortunately need him. But

I do think the Ped would run certain tests if he felt the need. That's an

excellent idea--thanks!

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 3/28/2006 2:31:57 PM Pacific Standard Time,

mrlbrinks@... writes:

The doctors do not, so I think some

lack the empathy needed to properly communicate with parents. I

pray that all works out in 's favor -- and I must agree with

Dale, make sure you have a SOLID PLAN in place with that immuno or

your pediatrician.

Thanks, Rogena. We have a plan in place, I'm just not sure if he will honor

it. But you can bet if he doesn't, I will be very loud and very obnoxious

until he does. I am generally not a pessimist, but you're right, I'm the one

that has lived with Bri during all of the (what must be) hundreds of infections.

The Immuno has not seen those.

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 3/29/2006 1:30:22 AM Central Standard Time,

sassykay59@... writes:

> The only thing keeping me going right now is that Bri doesn't get life

> threatening infections--usually. He gets sinus, ear and strep

> infections--but

> constantly. The strep can become life threatening, of course, because he is

> also

> a cardiac kid. But most of the infections

> do not result in hospitalizations. What I am concerned about is his

> spirit--he has just blossomed during this time of being well and I'm not

> willing to

> let that go

Sandi:

I know you know this and feel this, but it seems like should not trial

off. Maybe the cardiac issue is your ace in the hole? Seems like many docs

(and others in power) don't argue against you when you present a nicely veiled

threat. I remember in 's last 504 meeting, they were saying they did NOT

want to renew her plan. Two things I said seemed to do the trick to get my way.

One was that I said I " do not feel comfortable " going without a plan. The

other was that I said if we don't do the plan and she gets sicker, I'll wonder

if

it isn't because we didn't do the plan.

Seems like there is no earthly reason to trial him off. I missed many of the

posts on this subject, so someone might have covered this. But can you

document illness rate before and after starting IVIG? Can you " document " plain

ole

observation about his life before and after treatment? What are the

complications of strep and cardiac patients? Shouldn't everything be done to

avoid that?

I'm sorry if I'm complicating things by supporting the idea of not trialing

off, I don't know if it's a done deal. But it seems like they've thrown him a

lifeline, pulled him up to let him see the beautiful calm blue water, and are

now saying " Give it back. Swim on your own. " My heart just aches for both of

you!

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 3/29/2006 8:01:20 AM Pacific Standard Time,

bunneegirl@... writes:

Can you " document " plain ole

observation about his life before and after treatment? What are the

complications of strep and cardiac patients? Shouldn't everything be done to

avoid that?

I'm sorry if I'm complicating things by supporting the idea of not trialing

off, I don't know if it's a done deal. But it seems like they've thrown him a

lifeline, pulled him up to let him see the beautiful calm blue water, and are

now saying " Give it back. Swim on your own. " My heart just aches for both of

you!

Hi ,

As with any bacteria, strep can get into Bri's transplanted Pulmonary

valve. This can happen because strep gets into the bloodstream. It is by far,

what has made me the most nervous in the past. And yes, everything should be

done to avoid that. Bri has a past history of bacterial endocarditis so he is

even more at risk.

I hadn't even thought of bringing up his cardiac status with this Immuno,

but I think you have an excellent point. If Bri gets strep, that will be the

first thing I mention.

You have beautifully captured exactly how I feel. The lifeline has been

pulled back and we're supposed to swim all by ourselves in this big ocean!!

YIKES!!

How are your girls??

Sandi, Mom to --age 13--CVID