Re: Question/HELP!

[Guest guest]

Sandy,

We did that for three years in a row. would go off for the summer

sleep all summer go back in the fall and her levels be so low it took 4-6

months to get them back into the normal range for her. My Immuno kept

thinking that this would give her a break. Well now for the past 4 years we

do it year round every other week. Some kids do fine during the summer so

unfortunately it is sometimes a trial and error! Good luck

Lorri * CVID 16 years old (and now a first time driver I have new

worries!)

Question/HELP!

[Guest guest]

Sandi-unfortunately we had a similar battle-- BUT luckily for us we had the

ped and immuno in our corner - our now retired hem along with the ped and

immuno had decided the boys needed IVIG. Then when the hem retired our new

hem came onboard-he sometimes questioned the use of IVIG because what he saw

was post-IVIG healthier children! He kept mentioning a trial off of

IVIG.so I wrote him a letter and CC'd the other doctors. Then talked to

him. They then wrote and talked to him. Because S & J still had

cellulitis and other infections while on IVIG (J had to be hospitalized) I

think the other two doctors had a bit of influence-BUT I have to tell you

that our hem thanked me for the letter I wrote. If I get on my laptop

later, I will share with you a copy of the letter. I was forthright and let

him know what a difference IVIG made in our lives and that I did not want to

go back. I also said we would be willing to try a trial off of IVIG IF we

had established parameters prior to doing so. I wanted to know: How long?

How many infections before he decided to put them back, etc.. gotta dash at

the moment-will send a copy of the letter later (if I can find it)

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.

_____

From: [mailto: ] On Behalf Of

sassykay59@...

Sent: Wednesday, March 22, 2006 2:44 AM

Subject: Question/HELP!

Hi Everyone,

has been on IVIG now for almost a year and three months. His Immuno

wants to take him off for the summer to retest him. He can only test his Ig

levels because Bri was allergic to Pneumovax, so that will not be repeated.

Since IVIG has made such a dramatic difference in his life, I am wondering

if this is really necessary?? It is obvious to everyone who knows that

he isn't well by accident. If this is necessary, why and for how long??

My thinking is that Bri is still recovering his stamina. He is only able

to attend school for four hours each day. Besides PE, he only misses

Language

Arts which is taught here at home. If we take him off, and expect him to go

back in September, I'm not sure how his stamina will ever recover?? I was

hoping he could go full time next year, but I don't think that will be

possible

when he's been off IVIG. He is exhausted a lot, usually the week of IVIG.

But

just today, in the middle his month, he was so exhausted he didn't want to

go

to school, which is rare.

Just as a reminder, this is the Immuno who insists that CVID patients need

IVIG for either two years or the rest of their lives. If so, we're not at

two

years anyway, so I guess I'm just confused. Or maybe every mom feels this

way when they taper??

Thanks--

Sandi

_____

[Guest guest]

Sandi,

Please refresh my memory. When started IVIG, what were his IgG

levels? In other words -- was there a clear-cut, no question, diagnosis

-- or were you one of the ones that the numbers were good, but the

clinical picture was ugly? I can't remember.

The reason I ask is that I heard a talk by Dr. Lederman of s

Hopkins several years ago. He said if the IgG numbers have been

documented to be low and then you start IVIG and you retest the IgG

level and you call that number (X where X = native IgG level plus IVIG

addition). Then the only reason you need to ever " trial off " would be

if the " X " level raises consistently over time without a change in dose

of IVIG. He is totally against " trialing off " if the IgG numbers have

been documented to be low and there is no consistent rise in the " X "

number. Now initially upon beginning IVIG you will see a rise in the

" X " level but after a while (6 months or so) it stabilizes into a pattern.

Now, you also need to know that many, many doctors DO still trial off.

Dr. Lederman is an exception because he's actually seen it work. He had

a patient who had been on long-time IVIG receiver suddenly have her " X "

number go up. They trialed her off and her native IgG had begun to work

at around age 20. So, he feels strongly that there is no reason to go

off.

And you are right. Many doctors do not understand that taking a child

off of IVIG for 3 months (which is the time necessary to get a native

blood IgG level) will possibly set them back for 6 months or longer

before the IVIG can get them back to a therapeutic level. That's

because the clinical picture lags behind the blood work.

I would definitely write the letter and also give him Dr.

Lederman's information and see what happens. Most doctors are willing

to listen to the parents -- especially if they've got medical and

scientific reasons to do so. I like Patty's demand for parameters to be

in place.

By setting those paramenters first, then if at week 5 or 6 if gets

sick -- you could immediately go back on rather than making him suffer

for the whole 3 months. Katy actually requested a trial off at one

period. She was being relatively healthy and tired of IVIG and a new

immunologist suggested that she should trial off. Katy lasted to week 6

(2 weeks past her usual) before begging them to restart. They did.

Best wishes for a happy resolution to this. I really think this one is

worth fighting against! Oh, and if is aware of this debate and

upset by it -- certainly encourage him to write a letter, too!!!!

In His service,

dale

[Guest guest]

In a message dated 3/22/2006 5:34:29 AM Pacific Standard Time,

llkraft@... writes:

* CVID 16 years old (and now a first time driver I have new

worries!)

Lorri,

Thanks. Bri has never done any better in the summer. I guess you have

different things to worry about now that is driving!! YIKES

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 3/22/2006 6:06:50 AM Pacific Standard Time,

catholicmomof3@... writes:

IF we

had established parameters prior to doing so. I wanted to know: How long?

How many infections before he decided to put them back, etc.. gotta dash at

the moment-will send a copy of the letter later (if I can find it)

Thanks Pattie.

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 3/22/2006 10:17:27 AM Pacific Standard Time,

dale@... writes:

I really think this one is

worth fighting against! Oh, and if is aware of this debate and

upset by it -- certainly encourage him to write a letter, too!!!!

Dale,

Thank you, it's good to know that this isn't just me freaking out!!

Although at this point, it takes a lot to freak me out.

To answer your question, Bri's Ig levels were low: specifically Ig1

subclass. He also did not make enough antibodies to Pneumovax. The few that

were

made were almost gone four months later. So yes, there was a clear-cut diagnosis

made by this Immuno.

To add to the problem, Bri will need an ear tube to go off of IVIG. I

don't like putting him through even MORE surgery just for a trial (he's had 12

surgeries). I think I would feel more comfortable if it were next summer--after

he had a chance to regain his strength.

In my previous experience, I cannot talk this Immuno into much although he

clearly respects me. He has other moms come to me to ask questions. So I

love the idea of setting parameters first. I guess I'll be praying a lot--we

see

him on Friday.

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 3/22/2006 3:15:07 PM Pacific Standard Time,

dietdoc@... writes:

Your immuno's new plan makes me wonder if he has new information you don't

know about or if any other docs have discussed your child's situation with the

him. I would think that the immuno would want to re-evaluate your son, review

everything/trends/patterns, and talk with you before making any decisions.

But, there are some odd ducks out there.

I hope the immuno is doing routine monitoring of quantitative

immunoglobins. I can not imagine doing a trial on or off IVIG with a doc that

is not

monitoring my child carefully. Are 's IgG at troughs increasing?

You mention the severe fatigue lately -- are his current IgG levels are

adequate as it stands?

Hi ,

No, his Immuno has not tested his Ig's. This isn't a new plan on his part,

but apparently one he has had all along. In the beginning, it just seemed so

far away and I just wanted to get started on the IVIG. Now, the time is

almost here and I'm worried.

The fatigue should be starting to get somewhat better. I keep thinking

that when Bri goes to the hospital they could easily do bloodwork while he is

accessed.

This Immuno is an odd duck. However, he is the only Ped Immuno in our area

who accepts Bri's insurance. He was an excellent diagnostician, I will give

him that.

What is unclear to me is that Bri has not had one single ear infection or

strep infection since starting IVIG. I have no idea how that could be

interpreted into needing to trial off?!

Obviously, we have a lot to discuss on Friday.

Sandi, Mom to --age 13--CVID

[Guest guest]

Sandi -

I am not aware of the reasoning for taking a CVIDer off of IVIG for testing

quantitative Ig levels -- if antibody function testing is not going to be done.

What Dale said seems so logical to me.

Your immuno's new plan makes me wonder if he has new information you don't

know about or if any other docs have discussed your child's situation with the

him. I would think that the immuno would want to re-evaluate your son, review

everything/trends/patterns, and talk with you before making any decisions. But,

there are some odd ducks out there.

I hope the immuno is doing routine monitoring of quantitative immunoglobins.

I can not imagine doing a trial on or off IVIG with a doc that is not monitoring

my child carefully. Are 's IgG at troughs increasing?

You mention the severe fatigue lately -- are his current IgG levels are

adequate as it stands?

Is the immuno checking his IgM levels too? B- and T-cells? Sometimes, these

other features can be predictive of whether or not IgG numbers/function are

expected to improve as well. For example, if IgM is low, you would not expect

IgG to improve much -- though crazy things do happen.

Seems reasonable to ask questions, be prepared with a letter, and share your

concerns with your child's immuno. I think the idea of having an informal

contract of sorts (e.g., an actual care plan or if this happens than what...)

will help to protect your child.

Others (Ursula?) have done some trialing off of IVIG -- but I thought it was

mainly to determine antibody function. Perhaps others can shed light.

How stressful for you.

Take care,

(mom to CVIDer)

[Guest guest]

In a message dated 3/22/2006 10:07:37 P.M. Eastern Standard Time,

sassykay59@... writes:

The fatigue should be starting to get somewhat better

Sandi, Britt still has chronic fatigue, that has never changed.

Janet mom to Brittany CVID age 15

[Guest guest]

In a message dated 3/22/2006 10:07:37 P.M. Eastern Standard Time,

sassykay59@... writes:

The fatigue should be starting to get somewhat better

Sandi, Britt still has chronic fatigue, that has never changed.

Janet mom to Brittany CVID age 15

[Guest guest]

In a message dated 3/23/2006 10:08:24 PM Pacific Standard Time,

BBsmart2@... writes:

Sandi, Britt still has chronic fatigue, that has never changed.

Janet,

Did they ever test Britt for Autoimmune disease?? Did they ever increase

her dosage of IVIG?? I'm sorry she isn't feeling energy, she is a teenager and

deserves to be full of it!

Sandi, Mom to --age 13--CVID

[Guest guest]

In a message dated 3/24/2006 4:08:15 P.M. Eastern Standard Time,

sassykay59@... writes:

Did they ever test Britt for Autoimmune disease?? Did they ever increase

her dosage of IVIG??

They checked her ANA I know. It was okay. She has been referred to a

rheumatoid doctor. I am waiting on insurance issues at the moment. Yes, they

have

increased her IVIG.

Janet