Re: why do they need to speed up the IVIG

[Guest guest]

Definitely Yes! There is no reason why they should schedule him into a time slot

unless they know how he will react to the treatment. since he reacted badly talk

to your doc( if he/she is supportive) and let them know what went on etc. We

just talk with the nurses where goes, they are unwilling to increase

her rate past 45cc/hr because she reacts any faster, we are there 5-6 hours.

They just schedule her for the day incase of problems. But she is infused at the

hospital in the Apheresis Unit, so I don't know how other places work. But as a

parent you have the right to say something and make it better for your child.

Just my 2 cents.

mom to - CVID, asthma, GERD?

why do they need to speed up the IVIG

conan reacted very badly last time , which was his first... they

said if he acts like that again, they will switch products.... This

time on nov 23 they scheduled it for a 3 hr, infusion.... If

children or adults have delayed reactions, why chance it... Can I as

a parent suggest they slow it down, or due to the booking slots, is

that impossible... and do some people always get it at a slow rate,

similar to the first time....kahtleen mom to conan 21 months

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[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Kathleen, I'm hoping that all that stuff was reaction to other things

and not the IVIG. The hives were quite possibly related to the Tylenol,

and the screaming and throwing up could be from the impaction. I would

expect a first IVIG to cause him to feel tired and droopy for several

days as the immunoglobulins go to work attacking the infections. I'm

wondering -- and again this is just off the top of my head -- if maybe

the flush was the last straw that he could handle that day. Sometimes

the nurses flush a little too quickly and Katy says it feels like your

arm is going to explode. Sounds to me like there was a LOT going on

that day. Talk with your immuno because ultimately whatever he orders,

the nurses HAVE to do. I had to go that way for Katy because the nurses

just weren't listening to me and kept bumping up the speed. Once I got

the doctor to write the procedure into the order -- we got it slowed

down. I really want to encourage you to go in optimistically (but

prepared otherwise!). I know that's a tall order -- but it takes 4 or 5

months to get this routine into something that begins to feel familiar.

Every person tolerates a different speed, a different product, a

different regiment of pre-meds, etc. For a while you will feel

overwhelmed absolutely every single month and then about 6 months to a

year down the road -- you'll realize that it's just part of your life

and it will startle you! Also, because of the build up of infections

-- the first 2 or 3 IV's are the roughest because of the fever and

flu-like symptoms.

Hang in there, it will get better!

In His service,

Dale

trowlake wrote:

>-Dale I will call the immuno today, but the booking time really

>leaves no time for a slow infusion. he is scheduled at 3pm, and they

>close at 7pm.. of course they are open before that but, were all

>booked up.. I am nervous about a repeat of last time.. and are these

>delayed reaction common???? meaning right at the flush.....

>

>

[Guest guest]

>

> we also are at a childrens hospital.. His appt is at 3 and they

> close at 7pm.. He is 21 months old, and being infused near the end

> of the day, makes me nervous after his last infusion( which was the

> first)... I asked what happens if he is sick , they saidI guess :

> someone will have to stay after hours for him.... It was not a very

> friendly or specific answer... Can I ask them to run it slow??? or

> is that up to the immuno. I know these questions may seem old

school

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

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

Kathleen

Yes you CAN ask them to slow the rare down. If you are usuing an

infusion center as we are for Blake(We use the infusion center for

the Children's Cancer & Blood Disorders). What their protpcol

is....If the child leaves after the infusion(weather it went well or

not)you call the center & if they are still there they will have you

bring him back. If they are closed, & the reaction is bad, either

call the Dr. in charge of the IVIG or take him to the nearest ER.

Blake's is run over 3.5-4.5 hrs. He gets 12.5 grams every 2 weeks. We

hada problem at first with one or 2 ov the nurses with trying to run

it at too fast a rate & had BIG time problems. When I told the nurse

that running it faster than 40-60 cc makes Blake to where he is

unable to even move during the weekend into the next Tues(they do his

every other Friday)THey noted it & did turn it down. Then we had one

nurse that said she would NOT because there are certain protocol for

the Hospitla IVIG & they need to get the children out because they

were on a set time to leave also, I talked to Blake's Immuno. Told

him what was said & he made it Blake's protocol to NOT run his IVIG

over 60cc hr. He was using Polygam at the time also. His reactions

became more & more problematic so the Immuno. palced him on Gammagard

(He also has a very severe Latex allery so he is on latex alert. What

this means is every time IVIG is done everything down to the bottle

is Latex Free!!!).

So, If they folks will not run the rate slower after you ask then go

to the ordering Dr.

Another thing make sure you chart the reactions you are seeing.

Because he has a " good " treatment during infusion time does not he

will fair well in the hrs. after or the days after. This is what I

di with Blake & usually the Immuno. will agree with me & the nurses

may not like it, but, you are the care taker & have to deal with life

beyond the Hospital or center so you know Conan best & are his best

chance for anything to be done for his health & your peace of mind!!!

( Mom to Blake 12, CVID with complete T-Cell Dysfunction(IVIG

every 2 weeks), Asthma, GERD, Asperger's Syndrome, Steroid Induced

Osteoporosis, & Rare Blood Clotting Disorder)

http://wwww.caringbridge.com/ca/blake

Kick your shoes off, sit for a spell & see the Miracle we have in

Blake!!!!

[Guest guest]

thanks, I will insist they slow it down..... and if reaction

happens, I am not leaving.

> >

> > we also are at a childrens hospital.. His appt is at 3 and they

> > close at 7pm.. He is 21 months old, and being infused near the

end

> > of the day, makes me nervous after his last infusion( which was

the

> > first)... I asked what happens if he is sick , they saidI

guess :

> > someone will have to stay after hours for him.... It was not a

very

> > friendly or specific answer... Can I ask them to run it slow???

or

> > is that up to the immuno. I know these questions may seem old

> school

>

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

~

>

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

~

>

> Kathleen

> Yes you CAN ask them to slow the rare down. If you are usuing an

> infusion center as we are for Blake(We use the infusion center for

> the Children's Cancer & Blood Disorders). What their protpcol

> is....If the child leaves after the infusion(weather it went well

or

> not)you call the center & if they are still there they will have

you

> bring him back. If they are closed, & the reaction is bad, either

> call the Dr. in charge of the IVIG or take him to the nearest ER.

> Blake's is run over 3.5-4.5 hrs. He gets 12.5 grams every 2 weeks.

We

> hada problem at first with one or 2 ov the nurses with trying to

run

> it at too fast a rate & had BIG time problems. When I told the

nurse

> that running it faster than 40-60 cc makes Blake to where he is

> unable to even move during the weekend into the next Tues(they do

his

> every other Friday)THey noted it & did turn it down. Then we had

one

> nurse that said she would NOT because there are certain protocol

for

> the Hospitla IVIG & they need to get the children out because they

> were on a set time to leave also, I talked to Blake's Immuno. Told

> him what was said & he made it Blake's protocol to NOT run his

IVIG

> over 60cc hr. He was using Polygam at the time also. His reactions

> became more & more problematic so the Immuno. palced him on

Gammagard

> (He also has a very severe Latex allery so he is on latex alert.

What

> this means is every time IVIG is done everything down to the

bottle

> is Latex Free!!!).

> So, If they folks will not run the rate slower after you ask then

go

> to the ordering Dr.

> Another thing make sure you chart the reactions you are seeing.

> Because he has a " good " treatment during infusion time does not he

> will fair well in the hrs. after or the days after. This is what

I

> di with Blake & usually the Immuno. will agree with me & the

nurses

> may not like it, but, you are the care taker & have to deal with

life

> beyond the Hospital or center so you know Conan best & are his

best

> chance for anything to be done for his health & your peace of

mind!!!

> ( Mom to Blake 12, CVID with complete T-Cell Dysfunction(IVIG

> every 2 weeks), Asthma, GERD, Asperger's Syndrome, Steroid Induced

> Osteoporosis, & Rare Blood Clotting Disorder)

>

> http://wwww.caringbridge.com/ca/blake

> Kick your shoes off, sit for a spell & see the Miracle we have in

> Blake!!!!

[Guest guest]

-

thanks dale, I am TRYING to be optimistic, and hope al is well.. We

need a good thanksgiving, we have alot to be grateful for, and I

hope he is feeling good for it... k

-- In , Dale Weatherford <dale@x> wrote:

> from Dale, Mom to Katy, CVID, age 20

>

> Kathleen, I'm hoping that all that stuff was reaction to other

things

> and not the IVIG. The hives were quite possibly related to the

Tylenol,

> and the screaming and throwing up could be from the impaction. I

would

> expect a first IVIG to cause him to feel tired and droopy for

several

> days as the immunoglobulins go to work attacking the infections.

I'm

> wondering -- and again this is just off the top of my head -- if

maybe

> the flush was the last straw that he could handle that day.

Sometimes

> the nurses flush a little too quickly and Katy says it feels like

your

> arm is going to explode. Sounds to me like there was a LOT going

on

> that day. Talk with your immuno because ultimately whatever he

orders,

> the nurses HAVE to do. I had to go that way for Katy because the

nurses

> just weren't listening to me and kept bumping up the speed. Once

I got

> the doctor to write the procedure into the order -- we got it

slowed

> down. I really want to encourage you to go in optimistically

(but

> prepared otherwise!). I know that's a tall order -- but it takes

4 or 5

> months to get this routine into something that begins to feel

familiar.

> Every person tolerates a different speed, a different product, a

> different regiment of pre-meds, etc. For a while you will feel

> overwhelmed absolutely every single month and then about 6 months

to a

> year down the road -- you'll realize that it's just part of your

life

> and it will startle you! Also, because of the build up of

infections

> -- the first 2 or 3 IV's are the roughest because of the fever and

> flu-like symptoms.

>

> Hang in there, it will get better!

>

> In His service,

> Dale

>

> trowlake wrote:

>

> >-Dale I will call the immuno today, but the booking time really

> >leaves no time for a slow infusion. he is scheduled at 3pm, and

they

> >close at 7pm.. of course they are open before that but, were all

> >booked up.. I am nervous about a repeat of last time.. and are

these

> >delayed reaction common???? meaning right at the flush.....

> >

> >