IVIG

[Guest guest]

ASK THE DOCTOR. TELL HIM YOU DON'T WANT THE INFUSION TO BE DONE UNTIL YOU

FULLY UNDERSTAND WHAT IT IS AND WHAT IS IT SUPPOSED TO DO FOR YOUR SON. THAT

IS

YOUR RIGHT AS A PARENT, PROTECT YOUR CHILD AT ALL TIMES. DOCTORS ARE FAR

FROM BEING GOD. SO MANY, MAKE WAY TOO MANY MISTAKES TODAY.PATTI

[Guest guest]

ASK THE DOCTOR. TELL HIM YOU DON'T WANT THE INFUSION TO BE DONE UNTIL YOU

FULLY UNDERSTAND WHAT IT IS AND WHAT IS IT SUPPOSED TO DO FOR YOUR SON. THAT

IS

YOUR RIGHT AS A PARENT, PROTECT YOUR CHILD AT ALL TIMES. DOCTORS ARE FAR

FROM BEING GOD. SO MANY, MAKE WAY TOO MANY MISTAKES TODAY.PATTI

[Guest guest]

- thanks for your most informative posting

Good health!

Balan

[Guest guest]

Jan - we've not used it but the IDF has a handout that explains the new drug and

goes into detail about the differences between it and the Gamimmune.

Ursula

[Guest guest]

Oh Jan, I'm so glad you are all set! It sounds like you've got it all figured

out, at least... meaning you will get the info and you're set up to do the

new product in the hospital. I know that must stink, and this is all a shock,

but it must feel great to have a plan in place and know you're ready to go.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

Ursula and ,

Thank you for the information. I went to the IDF website and found

out about a free conference

call for information on transitioning to Gamunex. I signed up today

easily by calling the IDF (anyone wanting to be involved in this free

conference call needs to call the IDF right away) I didn't think about

the IDF having info on this product so I am really thankful.

Well, after several phone calls it has been set up that my son will

be able to take Gamimune N tomorrow with home health care as usual. We

will have to travel (about 7 hour drive one-way)

for his next IVIG and he will receive Gamunex under the Immunologist's

care and then we will see

from there when he can return to home health care. It has been rather

upsetting, but we are happy

that we now have a plan and a little time instead of needing to make the

trip immediately.

I really appreciate this group and the IDF.

Thank you all,

Jan

[Guest guest]

<<<In , Dawn Souza <nwd30@y...> wrote:

> DOES ANYONE KNOW WHICH PRODUCT WAS RECALLED? GAMUNEX OR GAMIMUNE? >>>

Hi Dawn,

It is my understanding that Bayer is replacing Gamimune with Gamunex.

My daughter had been getting Gamimune and the other day she received

Gammar-P IV (Aventis)for the first time. I was tense about the

change, and she did spike a fever at the end of the infusion, but she

did all right with the change.

Sandy

Mom to Riley (age 12, selective antibody deficiency, IVIG, asthma)

[Guest guest]

FYI, IVIG stands for intravenous immune globulin.

Yes, we've tried IVIG. My son was exhibiting symptoms of PANDAS for 8 months

(vocal and gestural tics that were at times extremely severe and had a sudden

onset w/no history of any type of tic disorder), so we decided to go ahead with

the IVIG. We did NOT test for GABHS, just used the other symptoms to diagnose.

About 2-3 weeks after the first infusion, the tics decreased by about half.

Within 2-3 weeks of the second infusion, they disappeared entirely. The other

improvements we saw were hard to pin down, because the tics had been such a big

problem for such a long time. What I mean is that it's hard to say with

certainty that the overall sense of his being so much more alert and connected

to everyone after the IVIG was a RESULT of the IVIG. The tics were at times so

bad that he couldn't even get sentences out or sit down to eat, so they may have

been masking improvements caused by other biomed. interventions or by normal

developmental changes during the 8 months that he had the tics.

We intended to continue with the IVIG, but haven't been able to due to financial

problems. A few tics have resurfaced, but they're *very* mild and not constant.

As soon as we can afford it, we plan to do at least two more infusions because I

feel that we probably haven't totally cleared-up the underlying problem.

FYI, my son (just turned 8) was already about 80% " recovered " when the tic

problem started last year.

- Becky B. (in Indiana)

[Guest guest]

In a message dated 4/12/04 7:48:40 AM Pacific Daylight Time, nwd30@...

writes:

ALSO FOR HOW LONG? IN

THE EVENT HE REACTS NORMALLY TO THIS ONE I WANT TO BE SURE HE IS NOT IN

PAIN. HE DOESN'T TALK, SO IT'S HARD TO TELL.

Hi Dawn,

What about his blood pressure? That usually goes up when someone is in

pain. I'm glad it went well!!

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, possible Tethered Cord Syndrome.

[Guest guest]

In a message dated 4/12/04 7:48:40 AM Pacific Daylight Time, nwd30@...

writes:

ALSO FOR HOW LONG? IN

THE EVENT HE REACTS NORMALLY TO THIS ONE I WANT TO BE SURE HE IS NOT IN

PAIN. HE DOESN'T TALK, SO IT'S HARD TO TELL.

Hi Dawn,

What about his blood pressure? That usually goes up when someone is in

pain. I'm glad it went well!!

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, possible Tethered Cord Syndrome.

[Guest guest]

In a message dated 4/12/04 5:56:18 PM Pacific Daylight Time, nwd30@...

writes:

i was thinking if your in pain

your blood pressure goes up, so i was wondering if that's how i could

tell. thanks

Hi Dawn,

Good thinking!! When a person is in a coma, or they think someone is

drug-seeking in the ER, they often use this method to see if they are really in

pain. However, I've been in pain for enough years that I can tell you it isn't

foolproof. But it probably works with me about 95% of the time.

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, possible Tethered Cord Syndrome.

[Guest guest]

In a message dated 4/12/04 5:56:18 PM Pacific Daylight Time, nwd30@...

writes:

i was thinking if your in pain

your blood pressure goes up, so i was wondering if that's how i could

tell. thanks

Hi Dawn,

Good thinking!! When a person is in a coma, or they think someone is

drug-seeking in the ER, they often use this method to see if they are really in

pain. However, I've been in pain for enough years that I can tell you it isn't

foolproof. But it probably works with me about 95% of the time.

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, possible Tethered Cord Syndrome.

[Guest guest]

Dawn,

I am so happy for and you all turned out so well:)

Janet

[Guest guest]

hello all!!! i am letting everyone know how mitchell made out with

his 1st. (second overall) ivig. so we were all waiting in the icu

and

nothing!!! we waited, doctors nurses my husband and i all watched

the

infusion as if it were the best movie we had ever seen. no reaction

at

all. no headache, vomiting nor even sleepiness!!!! we went to the

hospital at 9:30 came home at 5:30 no nap and didn't fall asleep in

the

car!! what a change....from black (total reaction to white nothing).

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dawn......CONGRATULATIONS!!!! This is great to hear. I am really

glad it went soooooo well!! Keep up the GOOD work !!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

maybe he'll have a delayed reaction?

Hopefully not. Then this will give you the encouragement you need

to do this at home sooner that you ever thought possible!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

He will see the immune doc today.

GOOD LUCK!!!! I am sure the Doc will be just AS happy as you are

about the infusion!!!

(mom to Blake CVID with Complete T-Cell Dysfunction:IVIG 5 yrs.

PICC Line still holding up fine.....5-months; Asthma, GERD(surgery

11.04.02)tube fed via Mic-Key button; InterSensory Motor Skills

Delays, Asperger's Syndrome, ADHD, & My Adventure of A

lifetime........ & Loving EVERY Moment of it!!!!)

http://www.caringbridge.org/ca/blake

[Guest guest]

from Dale, Mom to Katy, CVID, age 19

Dawn, I just want to take this opportunity to remind everyone that

IDF's recent survey of people receiving IVIG states that 55% have never

shown serious side effects, 22% not in the past year. That leaves 22%

that did have side effects during this past year. Here's the list of

side effects:

28% had headaches

19% had fever

14% had nasuea

12% had vomiting

12% had chills

10% had shortness of breath

10% had hives

9% had migraines

8% had skin rashes

7% had joint swelling

7% had high blood pressure

6% had back pain

5% had chest pain

5% had fatigue

5% had anaphylaxis

5% had shaking

5% had flu symptoms

5% had low blood pressure

4% had dizziness

3% had itching

Now the interesting thing about reading a survey like this one is that

you look at these percentages and say, " Wow, 9% of people receiving IVIG

get migraines. " But that's not entirely true -- All this survey shows

is that 9% of the people reported that once upon a time they had a

migraine in relation to IVIG. -- It doesn't show how often these side

effects happen. When you realize that -- and realize that this survey

was of 1000 IVIG users -- those percentages are pretty darn good!

Katy's had IVIG for 5 years and she would have to say that she's had

headaches (when they run it too fast), she's had fever

when she was already getting sick and the IVIG started working, a couple

of times she's felt dizzy and nauseated. She's had chills occasionally.

She got hives around the site one time that itched like crazy. She had

a migraine once and she often feels flu like for 24 hours. Yet, she and

I agree that she's never had a " bad " experience when you consider the

way it makes her feel within 48 hours -- full of energy and knowing that

she's protected for another 28 days.

Hope that helps. And congratulations to -- hopefully his body

is ready to respond properly to IVIG. Did they change brands or

anything?

In His service,

Dale

Dawn Souza wrote:

>hello all!!! i am letting everyone know how mitchell made out with his

>1st. (second overall) ivig.

>

[Guest guest]

Faye and Dawn,

Thank you. I'm so glad to hear of positive experiences with Gamunex.

We are not sure whether our son will have Gamunex in May or June, but it

will involve traveling to the Immuno so we are waiting on the insurance

approval.

He has done so well with the Gamimune N. We think that he will do

well with Gamunex also. Thanks for replying.

Jan

[Guest guest]

Jan

I wish you well. Keep us posted on how your son does.

Faye

Jan wrote:

> Faye and Dawn,

> Thank you. I'm so glad to hear of positive experiences with Gamunex.

> We are not sure whether our son will have Gamunex in May or June, but it

> will involve traveling to the Immuno so we are waiting on the insurance

> approval.

> He has done so well with the Gamimune N. We think that he will do

> well with Gamunex also. Thanks for replying.

> Jan

>

>

>

>

> 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]

We use gammaguard because Rebekah was first thought to have next to no IgA.

She did have reactions at first (headache, vomiting, achiness) but she

probably would have had those anyway. She was very infected at that time.

She has very, very few side effects now. Her infusion is tomorrow, too.

This will be her 36th IVIG....but who's counting! LOL

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3

IVIG

I spoke with the

nurse this morning and she said they may use Gammagard. She says these are

the ones they use. Anyone have any experience with this one?

[Guest guest]

Hello, Janet

My son has no detectable IgA and we are in a " tussle " to get him switched over

to a lower IgA product such as Gammagard. Our problem has been that we have

another doctor who oversees infusions besides our immuno....which makes

everthing more tricky. Calvin had Gammagard on his first infusion with no

trouble and needing only tylenol. Gammagard and Polygam are both very low

IgA----the lowest ones available.We hope to switch products after our infusion

tomorrow....by bringing his treatment home. This puts it under the direction of

our Ped and Immuno directly.

Anecdotal evidence is very promising for Gammagard.....hope it all goes well.

Fisher

mom of Calvin, 3yo, XLA

BBsmart2@... wrote:

Brittany's 4th. IVIG is tom. She is afraid because of the awful delayed side

effects from last month. She has no IGA and she was getting Caramune. I read

that was high in IGA. So why in the world would he give that one to her? Since

the reaction from last time he is going to change it I guess. I spoke with the

nurse this morning and she said they may use Gammagard. She says these are

the ones they use. Anyone have any experience with this one?

Janet, mom to Brittany, CVID, age 13

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Janet, Gammaguard is the only IVIG recommended for IgA deficient

patients. (I just found out that Polygam also has low IgA --

interesting!) If those two don't work without reactions, then you'll

need to start looking into SubQ which seems to diminish reactions even

for IgA deficient patients. But, yes, Gammaguard is the right product

for her. Hope tomorrow goes better. No one can promise is will be

better -- but, it should be. Also -- be sure and remind the nurses that

it is a new product and to run it SLOWLY. Any new product needs to be

run in slowly to watch for reactions.

Carimune contains 720 ug/mL of IgA

Gammaguard contains less than 2.2 ug/mL of IgA

Polygam also contains less than 2.2 ug/mL of IgA (I didn't know that)

And remember that post-infusion headaches can often be directly related

to speed of infusion even if they occur 24-48 hours later!

Why would they have ordered Caramune in the first place -- because a lot

of doctors don't know all these details. That's why you are on this

list!!!!!!!

Give Brittany a hug and remind her that IVIG will eventually make her

feel better -- not worse!

In His service,

Dale

BBsmart2@... wrote:

>Brittany's 4th. IVIG is tom. She is afraid because of the awful delayed side

>effects from last month. She has no IGA and she was getting Caramune. I read

>that was high in IGA. So why in the world would he give that one to her? Since

>the reaction from last time he is going to change it I guess. I spoke with the

>nurse this morning and she said they may use Gammagard. She says these are

>the ones they use. Anyone have any experience with this one?

>

>

[Guest guest]

- your first infusion will probably be the most difficult. His little

body is so use to having bacteria running rampant through it and now that

you are introducing antibodies into the system the bacteria isn't going to

like it at all. First infusions need to be started at a very low rate on

the medication pump and gradually increased over several hours. They may

premedicate him with an antihistamine (to help calm down the body as it

reacts to this foreign amount of antibodies) and possibly a steroid. These

drugs will help to ready to the body. The medication should be run on a

medication pump programmed for a certain rate per hour. Some offices will

try to drip the medicine in by chamber and gravity but this is very

dangerous and imprecise and could cause problems because if the IVIG goes in

too quick it can cause headaches, nausea, vomitting, chills, shakes, fever,

drop in blood pressure or other side effects.

Information can be found at

http://www.primaryimmune.org/pubs/book_pats/e_ch14.pdf

and

http://www..com/intravenous_immune_globulin.htm

Also you will want to keep track of what brand of IVIG he gets each time and

so I would recommend you go to

http://www.primaryimmune.org/pubs/infusion_log.pdf and print out a copy of

the IDF's infusion log with instructions

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

I started getting IVIG's under the MS dx , ins won't pay under the chronic lyme

dx. I have heard good things aobut this, I have one lyme friend who has been

getting them for 3yrs every 2wks under a different dx than lyme (CIPD) Of all

my lyme friends, he is doing the best, still functioning well, working fulll

time, traveling, etc. I think that has been a big part of his recovery.

eric_s11050 <eric_s11050@...> wrote:

anybody doing ivig?

eric

Questions and/or comments can be directed to the list owner at

-Owner

[Guest guest]

Of all my lyme friends, he is doing the best, still functioning

well, working fulll time, traveling, etc. I think that has been a

big part of his recovery.

>

Do you mean that being busy has helped this person with their

recovery? Because I would have to say, that FOR ME lying in bed was

more aggravating than just doing anything - and then I fell in love

with my present carreer - but I am happy for your friend too. there

are many days ( 3 weeks a month ) I cannot work. but at least I have

a bit of an 'out'.

I feel for people who cannot do anything because even a hobby is so

healthy to get your mind into a healthier space.....I find my

anxiety takes over, and if I didn't have distractions, I would

probably be more ill. Carmen

[Guest guest]

- I just noticed in your email response regarding IVIG's that you

have a friend with CIPD. Is it CIPD or CIDP. I have a friend with the

latter-CIDP...Chronic Inflammatory Deyelating Polyneuropathy. If that's

what you are thinking about, is it known that CIPD is Lyme related???

Thanks!! Elaine

[Guest guest]

Here is a little blurb on IVIG....I haven't tried it myself but I have heard

of three people now with Lyme Disease that get a lot of benefit from it.

" IVIG is a solution of globulins containing antibodies normally present in

adult human blood. Globulins are simple proteins that provide immunity

against disease. A protein is made up of several amino acids, which are the

microscopic building blocks that make up all cells. Many globulins are

inherited, so that the body is able from birth to fight off bacteria and

other infections. IVIG is used for maintenance treatment of people who are

unable to produce sufficient amounts of immune globulin antibodies. Children

who are HIV+ have impaired primary and secondary responses to infection.

IVIG can help prevent or treat infections such as meningitis, bacteremia,

osteomyelitis, septic arthritis, acute sinusitis, pneumonia, acute

mastoiditis, or abscess of an internal organ. "

Re: [ ] ivig

>

>

> I started getting IVIG's under the MS dx , ins won't pay under the chronic

> lyme dx. I have heard good things aobut this, I have one lyme friend who

> has been getting them for 3yrs every 2wks under a different dx than lyme

> (CIPD) Of all my lyme friends, he is doing the best, still functioning

> well, working fulll time, traveling, etc. I think that has been a big

> part of his recovery.

>

>

> eric_s11050 <eric_s11050@...> wrote:

>

>

> anybody doing ivig?

> eric