IVIG

September 27, 2006

Theresa - We used IVIG for Caroline for two purposes. One was for her

Uveitis and the other one was to boost her very much depleted immune system.

However, she did not handle the IVIG well (migraine's and vomiting) so we

discontinued them.

I have heard many success stories with IVIG though. Good luck!

Alia and Caroline, age 4, poly and uveitis

October 3, 2006

Just curious, so I understand-what is a puddle hopper flight? I tried to

figure it out and just couldn't! LOL

_____

From: [mailto: ] On Behalf Of

Schulman

Sent: Tuesday, October 03, 2006 10:52 PM

Subject: Re: IVIG

Carie,

Sorry I am unable to answer your question about flying after an infusion.

But, I do know that those " puddle hopper " flights are not always reliable.

My brother-in-law (to be) scheduled a short one within CA and his flight

home was canceled. He was delayed getting back to his military base -- where

he was being deployed to Iraq. LOL.

mom to Dani CVID

October 4, 2006

Carie - (assuming from your email address) please remember to sign all posts.

The unreliability of communter flights could be an issue, the unreliability of

infusion length could be an issue.

this being the first infusion you may run into problems with reactions,

insurance setup and account setup, history taking and general housekeeping stuff

that is done that first time around.

Most doctors will tell patients that they can watch for reactions up to 48 hrs

after infusion. I would be concerned that a reaction could happen during the

flight.

This being the first infusion and with such a long commute you might inquire

about a 23 hr observation admission. This would allow for a really slow

infusioin rate (optimal for first infusions) and for followup care immediately

after infusion. With 23 hr admission you can get there and get settled and this

might not flip flop his routine and upset him.

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

October 4, 2006

Have you considered just starting with SCIG instead of IVIG???

That is what we do.

S.

Quoting Carie <itsallaboutkreed@...>:

> Hi, I have a question. My child is scheduled to do his first IVIG infusion

> in a few weeks. I will have to drive at least 7 hours with him to do this.

> I did this when we saw Dr Gupta and it was not fun! I was thinking of

> flying. I was wondering from people who have done the IVIG on their kids if

> it too hard to fly out that evening after they have had the infusion? I do

> not know what I should do. My child has autism, and severe feeding

> problems, and he is a nightmare to take anywhere, so I am trying to get this

> done the easiest I can without it being a nightmare. Any suggestions?

> Thank you. I would be flying or from AZ to the OC airport.

>

October 4, 2006

Carie -

Sorry to confuse you. " Puddle hoppers " are small planes that go short

distances; like commuter planes. = ) You might find what Terri and Ursula said

helpful.

Good luck!

mom to CVIDer

Re: IVIG

Carie,

Sorry I am unable to answer your question about flying after an infusion.

But, I do know that those " puddle hopper " flights are not always reliable.

My brother-in-law (to be) scheduled a short one within CA and his flight

home was canceled. He was delayed getting back to his military base -- where

he was being deployed to Iraq. LOL.

mom to Dani CVID

October 4, 2006

If it's yur child's very first IVIG infusion, I would n't plan on travelling

the very same evening. You may have to watch for Reaction,

We did my son's first infusion last week at Dr G's infusion center too. We

styed over that night & drove back the next day. We too had a 6 hr drive

unfortuneately my son does not fly well. So for us we have no option but to

drive.

NAndini

>From: " Carie " <itsallaboutkreed@...>

>Reply-

>< >

>Subject: IVIG

>Date: Tue, 3 Oct 2006 17:27:00 -0700

>

>Hi, I have a question. My child is scheduled to do his first IVIG infusion

>in a few weeks. I will have to drive at least 7 hours with him to do this.

>I did this when we saw Dr Gupta and it was not fun! I was thinking of

>flying. I was wondering from people who have done the IVIG on their kids

>if

>it too hard to fly out that evening after they have had the infusion? I do

>not know what I should do. My child has autism, and severe feeding

>problems, and he is a nightmare to take anywhere, so I am trying to get

>this

>done the easiest I can without it being a nightmare. Any suggestions?

>Thank you. I would be flying or from AZ to the OC airport.

>

October 4, 2006

Where did you stay? I was just curious what is close by. Thanks

_____

From: [mailto: ] On Behalf Of

Nandini Minocha

Sent: Wednesday, October 04, 2006 1:40 PM

Subject: RE: IVIG

If it's yur child's very first IVIG infusion, I would n't plan on travelling

the very same evening. You may have to watch for Reaction,

We did my son's first infusion last week at Dr G's infusion center too. We

styed over that night & drove back the next day. We too had a 6 hr drive

unfortuneately my son does not fly well. So for us we have no option but to

drive.

NAndini

>From: " Carie " <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net>

cox.net>

>Reply-groups (DOT) <mailto:%40> com

><groups (DOT) <mailto:%40> com>

>Subject: IVIG

>Date: Tue, 3 Oct 2006 17:27:00 -0700

>

>Hi, I have a question. My child is scheduled to do his first IVIG infusion

>in a few weeks. I will have to drive at least 7 hours with him to do this.

>I did this when we saw Dr Gupta and it was not fun! I was thinking of

>flying. I was wondering from people who have done the IVIG on their kids

>if

>it too hard to fly out that evening after they have had the infusion? I do

>not know what I should do. My child has autism, and severe feeding

>problems, and he is a nightmare to take anywhere, so I am trying to get

>this

>done the easiest I can without it being a nightmare. Any suggestions?

>Thank you. I would be flying or from AZ to the OC airport.

>

October 6, 2006

candlewood suites, it's about 7 miles from the infusion center. Very

comfortable with a fully equipped kitchen. Great if your on a special diet.

Nandini

>From: " Carie " <itsallaboutkreed@...>

>Reply-

>< >

>Subject: RE: IVIG

>Date: Wed, 4 Oct 2006 13:54:41 -0700

>

>Where did you stay? I was just curious what is close by. Thanks

>

> _____

>

>From: [mailto: ] On Behalf Of

>Nandini Minocha

>Sent: Wednesday, October 04, 2006 1:40 PM

>

>Subject: RE: IVIG

>

>If it's yur child's very first IVIG infusion, I would n't plan on

>travelling

>

>the very same evening. You may have to watch for Reaction,

>

>We did my son's first infusion last week at Dr G's infusion center too. We

>styed over that night & drove back the next day. We too had a 6 hr drive

>unfortuneately my son does not fly well. So for us we have no option but to

>drive.

>

>NAndini

>

> >From: " Carie " <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net>

>cox.net>

> >Reply-groups (DOT) <mailto:%40> com

> ><groups (DOT) <mailto:%40> com>

> >Subject: IVIG

> >Date: Tue, 3 Oct 2006 17:27:00 -0700

> >

> >Hi, I have a question. My child is scheduled to do his first IVIG

>infusion

> >in a few weeks. I will have to drive at least 7 hours with him to do

>this.

> >I did this when we saw Dr Gupta and it was not fun! I was thinking of

> >flying. I was wondering from people who have done the IVIG on their kids

> >if

> >it too hard to fly out that evening after they have had the infusion? I

>do

> >not know what I should do. My child has autism, and severe feeding

> >problems, and he is a nightmare to take anywhere, so I am trying to get

> >this

> >done the easiest I can without it being a nightmare. Any suggestions?

> >Thank you. I would be flying or from AZ to the OC airport.

> >

October 8, 2006

We will be praying for you guys.

It is scary to think about your first IVIG infusion. My guys always felt

well right after their infusion...and the next day. It was the 2nd day

after infusion that they had the side-effects. We learned to manage those

by giving them ibuprofen to prevent headaches...and thus prevented vomiting.

We have now been on SCIG since February of this year and have not had any

side effects at all from the SCIG.

Sending prayers your way. (((HUGS))) Hang in there.

Peace Be With You,

Pattie

" Success is not final, failure is not fatal: it is the courage to continue

that counts. " ~ Winston Churchill

October 9, 2006

We just had our first infusion on Friday. Last week I was freaking

out about it. Then he spent 5 days in Childrens hospital and the day

after he got out they called and said to come in for IVIG in TWO

HOURS- no time to freak out! It was good for us that it happened

that way. My guy is 20 months old and non-verbal with global delays.

How could he tell me ANYTING?

Here's what they did for us: They started it at 1/6th of the goal

rate. They took base reads on temp, BP, heartrate, pulse. They

rechecked vitals 20 minutes later, and ramped it up a bit rechecking

vitals 5 minutes after the ramp and again 15 minutes later just

prior to the next ramp. They said if ANY vitals changed they stopped

ramping at that point. They can slow it back down to halt the side

effects. We couldnt get BPs on my son, he freaked out over the cuff.

But the infusion nurse checked everything else and watched his face

and activity. We went for a walk, we watched movies, we played

trains, we ate lunch. We were infusing for over 6 hours. But it went

beautifully. We haven't had any side effects (and we get side

effects to everything I swear).

Don't cancel. He needs this. You need him to have this. It will be

ok.

-Kimmi (mom to Connor 8 autism, dyslexia, neurofibromatosis, mild

hearing loss; Skye 7; Trew 3; Lochlan 20 months

hypogammaglobulinemia with complement deficiency, select antibody

deficiency, neutropenia, seizures, global delays, limb length

discrepency, torticollis, visual delays, hearing loss one-sided,

anemia, the list goes ON)

>

> I have an appt on the 19th to do my child's first IVIG infusion.

I have to

> say that I am really starting to freak out! I got my I.G. Living

magazine

> and have been reading, and am so scared of the possible side

effects! My

> son is completely nonverbal, and I am so afraid he will have

horrible

> headaches or something like an allergic reacion and I won't know

what is

> wrong with him. I am also afraid of the throwing up afterwards

because my

> son could have a metabolic crisis since he has SCAD. I do not

know how to

> travel home with a sick child throwing up or feeling awful. All

of this is

> really starting to overwhelm me, and I am considering canceling.

Am I being

> overly paranoid? I think it is because my child is sick so much

and

> nonverbal and has an immune and metabolic disorder, and I don't

want to make

> everything worse!

>

> Carie Vercelli

> Mom to Kreed, 8- SCAD, common variable immunodeficiency, autism,

colitis,

> gastritis and epilepsy, and severe allergies, and OCD

> Kaden, 10- nonverbal learning disorder, dyspraxia,

> dysgraphia, and?

> r, 14- optic nerve hypoplasia and?

> itsallaboutkreed@... Gilbert, Arizona

>

October 9, 2006

CArie,

I had my son's first IVIG on the 28th of last month & for a whole month I

was freaking out. I would have cancelled except my husband wouldn't let me.

We had the infusion at Dr G's infusion center. They have a great pediatric

nurse there . She was wonderful. They go really slow there they never

went over 30ml /hr. Since my son is 12 years old that meant it took almost

10 hrs.

We watch vedios, listened to music on dad's laptop, went for walks, ate

food. Did school work & in the ensd he & me were dancing just to make the

time go by.

My son is on the spectrum too, though verbal but extremely reactive to

almost all interventions.

All he got was some flusing which was taken care of by 200mgs of Motrin

every 6 hrs & a max temp of 98.8 . Which was gone the next morning . We

drove back incident free the next day.

I think IVIG is very safe ( from my limited experience ) and way better than

al the other interventions so many autistic kids get like chetaltion etc.

Don't cancel, it'll be OK, your son needs it to heal, just take a deep

breath & pray for the this to be an important tool in your son's healing.

NAndini

>From: " Carie " <itsallaboutkreed@...>

>Reply-

>< >

>Subject: IVIG

>Date: Sun, 8 Oct 2006 18:35:44 -0700

>

>I have an appt on the 19th to do my child's first IVIG infusion. I have to

>say that I am really starting to freak out! I got my I.G. Living magazine

>and have been reading, and am so scared of the possible side effects! My

>son is completely nonverbal, and I am so afraid he will have horrible

>headaches or something like an allergic reacion and I won't know what is

>wrong with him. I am also afraid of the throwing up afterwards because my

>son could have a metabolic crisis since he has SCAD. I do not know how to

>travel home with a sick child throwing up or feeling awful. All of this is

>really starting to overwhelm me, and I am considering canceling. Am I

>being

>overly paranoid? I think it is because my child is sick so much and

>nonverbal and has an immune and metabolic disorder, and I don't want to

>make

>everything worse!

>

>Carie Vercelli

>Mom to Kreed, 8- SCAD, common variable immunodeficiency, autism, colitis,

>gastritis and epilepsy, and severe allergies, and OCD

> Kaden, 10- nonverbal learning disorder, dyspraxia,

>dysgraphia, and?

> r, 14- optic nerve hypoplasia and?

>itsallaboutkreed@... Gilbert, Arizona

>

October 9, 2006

Carie,

Can you take another adult with you for the first time? Do you have a

friend, neighbor or relative who could go with you?

My son Conner also has multiple health issues and we were worried about

starting IVIG. He did end up having trouble with the first time, but they

were monitoring him closely and they stopped the infusion as soon as they

realized there was a problem. Once his vitals were stable we were able to

continue his IVIG later that day, only we went much slower - something they

should have done to begin with! My husband and I drove him home (7 hours)

that evening and he did just fine.

One thing I regret is not understanding enough about was the infusion rate,

I'm not sure what his starting rate was, but I remember it being pretty

fast. Now we start at 25ml/hour for the first half hour, then bump up every

30 minutes. We also started with Carimune, which I think might have been

part of the problem. He is now on Gammagard and he has no issues with it,

we do pretreat with Tylenol and Zofran for nausea, as a precaution.

Incidently, my son's partial seizures stopped within a couple of months of

starting IVIG/SCIG and his " autistic traits " pretty much disappeared. I'm

not sure he technically would qualify as being on the spectrum at this

point. I know there aren't any guarantees, but I hope you see some progress

in those areas too!

Take care,

Mom to Conner (12, NEMO/XHIM, asthma,

Hashimoto's disease and resolved adrenal insufficiency),

Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided),

Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown immune deficiency and asthma)

Please visit us at www.caringbridge.org/in/connersmith

November 29, 2006

That's what happened with , and I was told it was yeast. I don't know that

that was really the case, but he did develop a systemic yeast problem after a

few infusions that is nicely under control with Candex.

-

itsallaboutkreed@... wrote:

I have a question- my son did his first IVIG infusion yesterday of

flebogamma. Not to be gross, but is it common for his first poop afterwards to

be the most foul smelling and weird dark coloring? I really have never seen

anything like it! Just wondered how common it is.

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

Everyone is raving about the all-new beta.

November 29, 2006

That's what happened with , and I was told it was yeast. I don't know that

that was really the case, but he did develop a systemic yeast problem after a

few infusions that is nicely under control with Candex.

-

itsallaboutkreed@... wrote:

I have a question- my son did his first IVIG infusion yesterday of

flebogamma. Not to be gross, but is it common for his first poop afterwards to

be the most foul smelling and weird dark coloring? I really have never seen

anything like it! Just wondered how common it is.

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

Everyone is raving about the all-new beta.

November 29, 2006

it wouldnt be yeast just the first day after the infusion though would it?

Where did you get candex from? Is it a presciption?

---- Rob or Sunseri <RobRose@...> wrote:

> That's what happened with , and I was told it was yeast. I don't know

that that was really the case, but he did develop a systemic yeast problem after

a few infusions that is nicely under control with Candex.

>

> -

>

> itsallaboutkreed@... wrote:

> I have a question- my son did his first IVIG infusion yesterday of

flebogamma. Not to be gross, but is it common for his first poop afterwards to

be the most foul smelling and weird dark coloring? I really have never seen

anything like it! Just wondered how common it is.

>

> ---------------------------------

> Everyone is raving about the all-new beta.

>

December 6, 2006

Hi Deadra,

My daughter is currently on her 22nd month of IVIg infusions. The amount she

receives is too much to be considered to be receiving it at home. She started

out being infused over a 3 day period, but that wasn't enough. They doubled the

dose and has infusions 5 days every month. They will not start you at this

dose, though. The infusions have been amazing for my daughter, but I want to

warn you about a few things.

Some infusion nurses have not worked with ivig even though it is an old drug.

Don't let them give it to him in one day, and don't let them infuse Chase too

fast. The side effects one can get is usually because of those two factors.

Having Chase drink water before being infused, and continuing while he is there

will minimize headaches. Ivig is plasma; clear and viscous. That is why the

water is so important.

My daughter gets tired on the last day, and she has the flushed cheeks look.

Everyone is different, but her eyes have been quiet once they found the right

dose to put her on. There are different brands of ivig, and if one bothers your

son, try another before giving up on it. This might be hard to do, however,

because of the shortage. My daughter is on carrimune, but has tried 3 different

kinds.

Hope this helps,

' & a 11 yr panuveitis/jia

Deadra Dunbar <fortheloveofmyson1998_5@...> wrote:

Chase has been going through a very tough time, as alot of our kids

have right now. His eye is inflamed again, so we are back on hourly pred forte

drops. Seems everytime we go to every four hours, he complains of eye pain, we

rush him to the doctor and he goes back to once an hour. Anyway, his pediatric

rheumy called and wants Chase to stop the Remicade because it has failed him and

begin IVIG. I remember reading that some of you have dealt with this with your

kids. She told us that it was a blood transfusion given monthly and that it

takes longer than the Remicade to infuse. She also told me that the first couple

of times will be done at the hospital so they can monitor him, and then it can

be done at home by a home health aide. I called his insurance to see what we

need referral wise, and am waiting for them to call back. If any of you that

have dealt with this could let me know more, to ease our minds that would be

great.

On another note, two more stressful days till we find out if my husband goes to

Afghanistan. Please keep your fingers crossed that he won't.

Deadra and Chase 8

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

Want to start your own business? Learn how on Small Business.

December 6, 2006

His rheumy said that the infusions would be done once a month. How long does

each infusion last? I am so confused right now, because Dr. (eye

specialist) told us that he would be on this for life, 3 days a week for per

month, every month, but his rheumy said once a month, one day a month for about

9-12 months. If this doesnt work, we would then try Humira. I guess I should ask

her more questions. I am so confused.

Deadra

' Taunton <lcdanceacademy@...> wrote:

Hi Deadra,

My daughter is currently on her 22nd month of IVIg infusions. The amount she

receives is too much to be considered to be receiving it at home. She started

out being infused over a 3 day period, but that wasn't enough. They doubled the

dose and has infusions 5 days every month. They will not start you at this dose,

though. The infusions have been amazing for my daughter, but I want to warn you

about a few things.

Some infusion nurses have not worked with ivig even though it is an old drug.

Don't let them give it to him in one day, and don't let them infuse Chase too

fast. The side effects one can get is usually because of those two factors.

Having Chase drink water before being infused, and continuing while he is there

will minimize headaches. Ivig is plasma; clear and viscous. That is why the

water is so important.

My daughter gets tired on the last day, and she has the flushed cheeks look.

Everyone is different, but her eyes have been quiet once they found the right

dose to put her on. There are different brands of ivig, and if one bothers your

son, try another before giving up on it. This might be hard to do, however,

because of the shortage. My daughter is on carrimune, but has tried 3 different

kinds.

Hope this helps,

' & a 11 yr panuveitis/jia

Deadra Dunbar <fortheloveofmyson1998_5@...> wrote:

Chase has been going through a very tough time, as alot of our kids have right

now. His eye is inflamed again, so we are back on hourly pred forte drops. Seems

everytime we go to every four hours, he complains of eye pain, we rush him to

the doctor and he goes back to once an hour. Anyway, his pediatric rheumy called

and wants Chase to stop the Remicade because it has failed him and begin IVIG. I

remember reading that some of you have dealt with this with your kids. She told

us that it was a blood transfusion given monthly and that it takes longer than

the Remicade to infuse. She also told me that the first couple of times will be

done at the hospital so they can monitor him, and then it can be done at home by

a home health aide. I called his insurance to see what we need referral wise,

and am waiting for them to call back. If any of you that have dealt with this

could let me know more, to ease our minds that would be great.

On another note, two more stressful days till we find out if my husband goes to

Afghanistan. Please keep your fingers crossed that he won't.

Deadra and Chase 8

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

Want to start your own business? Learn how on Small Business.

December 6, 2006

Dr. is in charge of my daughters care, too. He's a rheumatologist, too.

I'm sure you know that already. I was never told that this would go on for

life, but there is something to be said about preparing for the worst, then

expecting the least. The infusions should take a few hours every day for three

days in the beginning. Dr. worked this out with a hematologist at home

here in Oregon. If I let the rheumatologist at home here drive my daughters

health care bus (for lack of a better term) he would of done things differently.

While I was in Boston, Dr. personally called the hematologist here and

asked if he would interested in collaborating with him for my daughters care.

They fax each other, and I bring copies of lab work to Dr. s when we go

back. I had been pre-warned about those that infuse too fast and or during only

one day. Dr. told me that once my daughters eyes got quiet, off of all

steroid, that she would be on the infusions for one year.

Between you and me, though, it wouldn't surprise me if she was on infusions

for a very long time. She has felt better (than she has in a long time) being

on them, and her immune system is not suppressed. Ivig actually helps the body

to fight infection.

I don't want to confuse you more. I would write Dr. about your

concers, though. Let him know the other doctors thoughts and ask how you should

handle this. Maybe you could get your rheumie and him to converse over a phone

call?

Let me know what happens,

'

Deadra Dunbar <fortheloveofmyson1998_5@...> wrote:

His rheumy said that the infusions would be done once a month. How

long does each infusion last? I am so confused right now, because Dr.

(eye specialist) told us that he would be on this for life, 3 days a week for

per month, every month, but his rheumy said once a month, one day a month for

about 9-12 months. If this doesnt work, we would then try Humira. I guess I

should ask her more questions. I am so confused.