Re: Why still IVIG?

[Guest guest]

>

> My daughter, 14, has CVID and has had severe reactions to IVIG since she

started IVIG 1 1/2 yrs ago. She started out with migraines. We had to get a

neurologist involved to help with that. Also, she has MAJOR problems with her

veins and we've had to reschedule due to not being able to get one. The Dr.

finally got her to where she could tolerate the IVIG getting 24 grams over a 10

hour period once a month. She's gone back and forth with being lethargic and

having migraines. It doesn't happen every time. Well, now this last time she

had IVIG she developed aseptic meningitis. She had to stay in the hospital for

4 days. She is better now but has had a headache everyday ever since this

happened. I have been talking to her Dr. about switching to SCIG. It looks

like there are no side effects other than a possible rash. He is not willing to

switch her and told me that the side effects are no different than with IVIG.

????? That's not what I'm finding. Is this true? I also know that his office

doesn't do this and has not had one patient on it. Anyone know of any Dr.'s in

the DFW area that do this? I feel like he doesn't want to do this b/c his

office doesn't do it. Any suggestions or comments?

>

> Thanks,

>

>

>

[Guest guest]

There are several sources of information about subcutaneous Ig replacement.

Try the Immune Deficiency Foundation. Try the Vivaglobin website (it is

still up http://www.vivaglobin.com/)

Possibly your best bet is to have your doctor call the IDF's Consulting

Immunologist program so that one doctor can speak to another doctor. It

will reassure him that the subq form can have less side effects.

Now what they are finding is that subq is not always side effect free and

some patients do have similar reactions. But it is a small percentage and

definitely not the norm.

Macey was an IVIG patient for 7 years before subq was trialed here in

Atlanta. She had reactions every infusion, she had the trial off because

they were so bad. Her reactions were so bad that even though her

vaccination tests and levels came back too low it was still considered safer

to leave her off infusions as long as she wasn't getting sick. She couldn't

stay off because of sepsis and infection. Then she had to go back on. But

we sweated through the reactions until subq. She is having no reactions

(topical or systemic) with subq.

our experience.

Ursula

mom to Macey (15,CVID)

[Guest guest]

Your Dr is misinformed, SCIG generally has less side effects then IVIG for most

people. We had horrible side effects from IG and the worst we've gotten in 3

years of sub-q is mild/moderate site reactions when we 1st started.

________________________________

From: goldilockskiki <kiki@...>

Sent: Thu, October 28, 2010 7:22:04 AM

Subject: Why still IVIG?

My daughter, 14, has CVID and has had severe reactions to IVIG since she started

IVIG 1 1/2 yrs ago. She started out with migraines. We had to get a

neurologist involved to help with that. The Dr. finally got her to where she

could tolerate the IVIG getting 24 grams over a 10 hour period once a month.

She's gone back and forth with being lethargic and having migraines. It doesn't

happen every time. Well, now this last time she had IVIG she developed aseptic

meningitis. She had to stay in the hospital for 4 days. She is better now but

has had a headache everyday ever since this happened. I have been talking to

her Dr. about switching to SCIG. It looks like there are no side effects other

than a possible rash. He is not willing to switch her and told me that the side

effects are no different than with IVIG. ????? That's not what I'm finding.

Is this true? I also know that his office doesn't do this and has not had one

patient on it. Anyone know of any Dr.'s in the DFW area that do this? I feel

like he doesn't want to do this b/c his office doesn't do it. Any suggestions

or comments?

Thanks,

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

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

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

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

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

I agree with about the Dr.

 

In our experience, Blake is one of the RARE cases as far as SCIG(Documented  by

CSL) He not only had Psycological issues he had severe breathing probles as well

as the Hives & unbearable GI issues...this while Premedicated with the benadryl

and steroids.

We later found out it was because of the amount of IgA that was in the product.

Blake has NO IgA so that makes getting VIVA contradictory to Blake's body.

Whe they switched Blaek's Product to what he was geting through IV...we had a

completly different turn out & will NOT look back at IV again UNLESS it is

necessary to do so.

Blake is now on Gammagard S/D. He was getting 25 grams every 2 weeks but still

was not staying well and had several life threatening infections due to the

Central line he had....It was being used for IVIG and IV antibiotics(Blake

cannot break down the oral antibiotics to make them effective for the infections

he had). 

When we switched to the 16% solution of VIVA we did not think PROBLEMS we were

excited. THen after the first reaction....we were okay it is just Blake's

body.....well after 3 months of infections and worsening of sensory issues and

his Autism became more violent even for him!!!

Blake's Immunologisr started looking for answers to help Blake. The only one was

to go back to Gammagard S/D but we knew Blake has Factor V Liden which is a Rare

Form of Blood Clotting Disease...his is genetic and he was found to have 4

different mutations of the Blood Clotting disorder that made his system attack

anything forign in his body, so he could NOT possible have a Central line

placed!

 

Since Gammagard S/D has not been approved for Sub-Q we went straight the Baxter

Company. THey then helped us go to the FDA and get Medical Mercy for Blake to

get Gammagard s?D through sub-q. Blake is currently on Gammagard S/D via Sub-Q

and he receives 30 grams a week...(10 grams for 3 days)...we do it ALL at

home...No Nurse is needed and Blake & I have the freedom to choose which days we

will infuse and we can do it at night while Blake sleeps all he does is remove

the needles when he awakens!!!!

We have not been a hopsital since summer 2008.  only last yr. when he had H1N1

and the regular flu...

 

It can be accomplished to get sub- and you surely will see a big

difference....Blake went from spending 9 mos. a yr in a hospital to NOT being in

one in 2 yrs.  Yes he does still have infections but nothng that one or 2

rounds can clear......I Knock on wood everytime I say that because I do not want

to send bad vibes to Blake's body and start having in issues.

As far as the Psychological issue....no the meds. did not cause his Autism nor

did it cause his Sensory issues But he is not back to the way he was when we had

the worsening with VIVA. But we kenw there were chances that some folks may have

reverse reactions just so happend Blake is one of the RARE folks who did.....

But it still does NOT make Blake want to go back to IV and he is happy with

doing his Treatments at home!!!!!

 

Just our Experience

 

,

Mom to Blake 18

Severe Combined Immunodeficiency with Complete T-Cell Dysfunction,

Autisim, Severe Asthma GERD, Pancratic Insufficiency, Factor V Lieden(BLood

clotting disorder)

http://www.caringbrige.org/visit/thetalesofblake

Come & see just WHY i call him

The Greatest Adventure of MY Lifetime!!!!

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: <bluetaelon@...>

Subject: Re: Why still IVIG?

Date: Thursday, October 28, 2010, 1:03 PM

 

Your Dr is misinformed, SCIG generally has less side effects then IVIG for most

people. We had horrible side effects from IG and the worst we've gotten in 3

years of sub-q is mild/moderate site reactions when we 1st started.

________________________________

From: goldilockskiki <kiki@...>

Sent: Thu, October 28, 2010 7:22:04 AM

Subject: Why still IVIG?

My daughter, 14, has CVID and has had severe reactions to IVIG since she started

IVIG 1 1/2 yrs ago. She started out with migraines. We had to get a

neurologist involved to help with that. The Dr. finally got her to where she

could tolerate the IVIG getting 24 grams over a 10 hour period once a month.

She's gone back and forth with being lethargic and having migraines. It doesn't

happen every time. Well, now this last time she had IVIG she developed aseptic

meningitis. She had to stay in the hospital for 4 days. She is better now but

has had a headache everyday ever since this happened. I have been talking to

her Dr. about switching to SCIG. It looks like there are no side effects other

than a possible rash. He is not willing to switch her and told me that the side

effects are no different than with IVIG. ????? That's not what I'm finding.

Is this true? I also know that his office doesn't do this and has not had one

patient on it. Anyone know of any Dr.'s in the DFW area that do this? I feel

like he doesn't want to do this b/c his office doesn't do it. Any suggestions

or comments?

Thanks,

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

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

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

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

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

It is a VERY viable option. He can contact Dr. Jane Purser in Tulsa if he wants

to talk to someone who has been doing it for YEARS. She is FANTASTIC. We lived

in Tulsa until last year and Acreedo (home infusion company out of Arkansas)

provided it at home for us for 3 years without ANY problems. My son is 14 was on

IV for 8 years and then switched to sub Q. We personally are VERY happy with the

outcome and he does not even get a localized problem now at all. You could also

have him call IDF and talk to some of the other doctors in the Dallas area to

see if he could get more comfortable. Worst case scenario is to go to the

Childrens Hospital in Dallas to get another opinion since I am sure they are

doing it there.

BARBIE

________________________________

From: goldilockskiki <kiki@...>

Sent: Thu, October 28, 2010 7:22:04 AM

Subject: Why still IVIG?

My daughter, 14, has CVID and has had severe reactions to IVIG since she started

IVIG 1 1/2 yrs ago. She started out with migraines. We had to get a

neurologist involved to help with that. The Dr. finally got her to where she

could tolerate the IVIG getting 24 grams over a 10 hour period once a month.

She's gone back and forth with being lethargic and having migraines. It doesn't

happen every time. Well, now this last time she had IVIG she developed aseptic

meningitis. She had to stay in the hospital for 4 days. She is better now but

has had a headache everyday ever since this happened. I have been talking to

her Dr. about switching to SCIG. It looks like there are no side effects other

than a possible rash. He is not willing to switch her and told me that the side

effects are no different than with IVIG. ????? That's not what I'm finding.

Is this true? I also know that his office doesn't do this and has not had one

patient on it. Anyone know of any Dr.'s in the DFW area that do this? I feel

like he doesn't want to do this b/c his office doesn't do it. Any suggestions

or comments?

Thanks,

[Guest guest]

We have been using Gammagard SD since 2006 without ANY problems. My son also has

had no IgA most of his life. Some people have had better experiences just by

changing products but your daughter does not need to suffer due to the ignorance

of your doctor. Just keep on looking out there for someone to help you. You are

on the right track.

BARBIE

________________________________

From: s <momtoboywholoveshisgoats@...>

Sent: Thu, October 28, 2010 11:58:41 AM

Subject: Re: Why still IVIG?

I agree with about the Dr.

In our experience, Blake is one of the RARE cases as far as SCIG(Documented by

CSL) He not only had Psycological issues he had severe breathing probles as well

as the Hives & unbearable GI issues...this while Premedicated with the benadryl

and steroids.

We later found out it was because of the amount of IgA that was in the product.

Blake has NO IgA so that makes getting VIVA contradictory to Blake's body.

Whe they switched Blaek's Product to what he was geting through IV...we had a

completly different turn out & will NOT look back at IV again UNLESS it is

necessary to do so.

Blake is now on Gammagard S/D. He was getting 25 grams every 2 weeks but still

was not staying well and had several life threatening infections due to the

Central line he had....It was being used for IVIG and IV antibiotics(Blake

cannot break down the oral antibiotics to make them effective for the infections

he had).

When we switched to the 16% solution of VIVA we did not think PROBLEMS we were

excited. THen after the first reaction....we were okay it is just Blake's

body.....well after 3 months of infections and worsening of sensory issues and

his Autism became more violent even for him!!!

Blake's Immunologisr started looking for answers to help Blake. The only one was

to go back to Gammagard S/D but we knew Blake has Factor V Liden which is a Rare

Form of Blood Clotting Disease...his is genetic and he was found to have 4

different mutations of the Blood Clotting disorder that made his system attack

anything forign in his body, so he could NOT possible have a Central line

placed!

Since Gammagard S/D has not been approved for Sub-Q we went straight the Baxter

Company. THey then helped us go to the FDA and get Medical Mercy for Blake to

get Gammagard s?D through sub-q. Blake is currently on Gammagard S/D via Sub-Q

and he receives 30 grams a week...(10 grams for 3 days)...we do it ALL at

home...No Nurse is needed and Blake & I have the freedom to choose which days we

will infuse and we can do it at night while Blake sleeps all he does is remove

the needles when he awakens!!!!

We have not been a hopsital since summer 2008. only last yr. when he had H1N1

and the regular flu...

It can be accomplished to get sub- and you surely will see a big

difference....Blake went from spending 9 mos. a yr in a hospital to NOT being in

one in 2 yrs. Yes he does still have infections but nothng that one or 2 rounds

can clear......I Knock on wood everytime I say that because I do not want to

send bad vibes to Blake's body and start having in issues.

As far as the Psychological issue....no the meds. did not cause his Autism nor

did it cause his Sensory issues But he is not back to the way he was when we had

the worsening with VIVA. But we kenw there were chances that some folks may have

reverse reactions just so happend Blake is one of the RARE folks who did.....

But it still does NOT make Blake want to go back to IV and he is happy with

doing his Treatments at home!!!!!

Just our Experience

,

Mom to Blake 18

Severe Combined Immunodeficiency with Complete T-Cell Dysfunction,

Autisim, Severe Asthma GERD, Pancratic Insufficiency, Factor V Lieden(BLood

clotting disorder)

http://www.caringbrige.org/visit/thetalesofblake

Come & see just WHY i call him

The Greatest Adventure of MY Lifetime!!!!

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: <bluetaelon@...>

Subject: Re: Why still IVIG?

Date: Thursday, October 28, 2010, 1:03 PM

Your Dr is misinformed, SCIG generally has less side effects then IVIG for most

people. We had horrible side effects from IG and the worst we've gotten in 3

years of sub-q is mild/moderate site reactions when we 1st started.

________________________________

From: goldilockskiki <kiki@...>

Sent: Thu, October 28, 2010 7:22:04 AM

Subject: Why still IVIG?

My daughter, 14, has CVID and has had severe reactions to IVIG since she started

IVIG 1 1/2 yrs ago. She started out with migraines. We had to get a

neurologist involved to help with that. The Dr. finally got her to where she

could tolerate the IVIG getting 24 grams over a 10 hour period once a month.

She's gone back and forth with being lethargic and having migraines. It doesn't

happen every time. Well, now this last time she had IVIG she developed aseptic

meningitis. She had to stay in the hospital for 4 days. She is better now but

has had a headache everyday ever since this happened. I have been talking to

her Dr. about switching to SCIG. It looks like there are no side effects other

than a possible rash. He is not willing to switch her and told me that the side

effects are no different than with IVIG. ????? That's not what I'm finding.

Is this true? I also know that his office doesn't do this and has not had one

patient on it. Anyone know of any Dr.'s in the DFW area that do this? I feel

like he doesn't want to do this b/c his office doesn't do it. Any suggestions

or comments?

Thanks,

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

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

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

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

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages