Re: IVIG - really, really nervous...

August 17, 2008

, I am really sorry for the problems your son is having. Generally, the

rate or brand is why they have some of the side effects. If they rate is going

to fast the body as a harder time assimilating it when it crosses from the blood

to the brain. My immunologist said that he believes that some brands have more

cell fragments than others and it causes irritability of the meninges. Either

way generally starting really slow. We started at 7cc and added 7cc every 5

minutes until we got to a rate that seemed to bother him a little bit. Then we

left it there. For several years it was a max of 35cc per hour. After several

years we got to 75cc per hour. So..... how fast did they run it? Also having him

well hydrated does help. My son never had to use steroids but we did use Motrin

and Zyrtec as premedications. ( He gets very grumpy with Benadryl like many

kids) Where in Oregon do you live? I was from Wa state. IDF may be able to find

a place closer to you

if you need. We are now on Sub Q and have NO side effects and he is more well

than he has been in his whole life. It is so wonderful.

BARBIE

IVIG - really, really nervous...

My son has to get IVIG and it seems there are some really nasty side-

effects. I'm kind of freaking out -- do most kids get headaches and

vomit?? Anyone had to give up on the IVIG due to side effects? I heard

that steroids prior to treatment may lessen the effect?

I have to fly to CA for the treatment and I don't know if I should try

to get back the same day (to OR) or stay overnight? Any

recommendations?

August 17, 2008

, I think IVIG is like a lot of things. You hear some isolated

cases of bad side effects and fear the worst. Certainly there is a

risk of side effects, and some can be serious, but that's not

necessarily a done deal. Mark has been on IVIG 7 years and has had

about 4 headaches (on bad stick days) and when he was a baby he ran a

few fevers. We haven't premedicated with anything since he was 3. Not

even tylenol. When he's done, he gets down, plays and goes back to

school. No real problems.

They will start him out a slow rate, like Barbie said, and increase it

slowly. I would strongly encourage you to have him drink lots of

fluids (lots!) the day before/of. That not only helps with his veins

for the stick, it can also help with the side effects of the headaches.

If your son were going to have a reaction, it would occur within a few

hours of receiving the infusion. It is likely if he has been sick a

while that he might feel overall tired, achey type for a couple days

because the IGG is going to go in there and " mop up " the bugs. That

can give him a mild, tired type feeling for a couple days.

You might want to investigate the SubQ method also. Mark is just

getting started on that, and it does have a much lower incidence of

side effects.

Best wishes to you and your son,

mom to Mark 7 CVID

>

> My son has to get IVIG and it seems there are some really nasty side-

> effects. I'm kind of freaking out -- do most kids get headaches and

> vomit?? Anyone had to give up on the IVIG due to side effects? I

heard

> that steroids prior to treatment may lessen the effect?

>

> I have to fly to CA for the treatment and I don't know if I should

try

> to get back the same day (to OR) or stay overnight? Any

> recommendations?

>

August 17, 2008

Adverse reactions can occur. However, if you are having IVIG done at a major

medical center in CA (where are you getting treatment?), they should know how to

prevent or at least minimize adverse reactions.

Still, I would add to what some of the other moms have said:

1. Make sure they run the product slow...really! This is especially applicable

if the body is: (1) infected and (2) not used to IVIG.

(My child give about 45cc/h the first time and this resulted in headache and

vomiting....needlessly. I'd advise you to get there early so the nurses don't

feel pressured to crank up the pump...like they did with my daughter. The next

time, we demanded that the nurses reduce the rate to < 30cc/hr and doc gave her

steroid. She did fine. Only a mild headache 24 hours later...which we managed

with motrin.)

2. If the doctor suggested steroid, don't be afraid to try. You can always ask

that you taper it down for the next infusion, assuming that things go well. You

want to make IVIG as positive an experience as possible...especially the first

few times. They (and you!) need memories of things going well to prevent or

extinguish fears.

3. Push fluids (that is, if they are not contraindicated...like with kidney

conditions) and give snacks.

4. Write down the product and lot number. If things don't go smoothly, you'll

want to know what brand you're child was given so that you can adjust if needed.

If this is the first treatment, and it were my child, I would not fly for 24

hours.

Good luck!

IVIG - really, really nervous...

My son has to get IVIG and it seems there are some really nasty side-

effects. I'm kind of freaking out -- do most kids get headaches and

vomit?? Anyone had to give up on the IVIG due to side effects? I heard

that steroids prior to treatment may lessen the effect?

I have to fly to CA for the treatment and I don't know if I should try

to get back the same day (to OR) or stay overnight? Any

recommendations?

August 17, 2008

---We have had a few side effects over two yrs of IVIG. None of them

made me think it was not worth the benefits of overall health for my

kids. I have one child who does always get IV steroid, now, bc once,

over a yr ago, he had a bad reaction, called rigors. But, his nurses

acted quickly, his dr was there within minutes, and he was fine in a

short time, and its never happened again....and I have three kids on

IVIG.

We found with one product, called Carrimmune, we had more side

effects, like achy back, headache, and vomiting. We switched to

Gammagard, and that all stopped. My 10 yr old daughter needs a slower

rate than her 6 and 8 yr old brothers. It will be trial and error, but

you will soon find out what works best for your child.

I would see about staying overnight, if for no other reason than that

you are both going to be really tired out, most likely.

good luck!

valarie

In , Schulman <dietdoc@...> wrote:

>

> Adverse reactions can occur. However, if you are having IVIG done

at a major medical center in CA (where are you getting treatment?),

they should know how to prevent or at least minimize adverse reactions.

>

> Still, I would add to what some of the other moms have said:

>

> 1. Make sure they run the product slow...really! This is

especially applicable if the body is: (1) infected and (2) not used to

IVIG.

> (My child give about 45cc/h the first time and this resulted in

headache and vomiting....needlessly. I'd advise you to get there

early so the nurses don't feel pressured to crank up the pump...like

they did with my daughter. The next time, we demanded that the nurses

reduce the rate to < 30cc/hr and doc gave her steroid. She did fine.

Only a mild headache 24 hours later...which we managed with motrin.)

>

> 2. If the doctor suggested steroid, don't be afraid to try. You

can always ask that you taper it down for the next infusion, assuming

that things go well. You want to make IVIG as positive an experience

as possible...especially the first few times. They (and you!) need

memories of things going well to prevent or extinguish fears.

>

> 3. Push fluids (that is, if they are not contraindicated...like

with kidney conditions) and give snacks.

>

> 4. Write down the product and lot number. If things don't go

smoothly, you'll want to know what brand you're child was given so

that you can adjust if needed.

>

> If this is the first treatment, and it were my child, I would not

fly for 24 hours.

>

> Good luck!

>

> IVIG - really, really nervous...

>

> My son has to get IVIG and it seems there are some really nasty side-

> effects. I'm kind of freaking out -- do most kids get headaches and

> vomit?? Anyone had to give up on the IVIG due to side effects? I heard

> that steroids prior to treatment may lessen the effect?

>

> I have to fly to CA for the treatment and I don't know if I should try

> to get back the same day (to OR) or stay overnight? Any

> recommendations?

>

August 17, 2008

I'll ask about subQ. I guess the immunologist is hoping that there

is a rare chance that the IVIG will recover his immune system, but

he's skeptical since my son is 6.

Do the subQ injections hurt a lot?

>

> , I am really sorry for the problems your son is having.

Generally, the rate or brand is why they have some of the side

effects. If they rate is going to fast the body as a harder time

assimilating it when it crosses from the blood to the brain. My

immunologist said that he believes that some brands have more cell

fragments than others and it causes irritability of the meninges.

Either way generally starting really slow. We started at 7cc and

added 7cc every 5 minutes until we got to a rate that seemed to

bother him a little bit. Then we left it there. For several years it

was a max of 35cc per hour. After several years we got to 75cc per

hour. So..... how fast did they run it? Also having him well hydrated

does help. My son never had to use steroids but we did use Motrin and

Zyrtec as premedications. ( He gets very grumpy with Benadryl like

many kids) Where in Oregon do you live? I was from Wa state. IDF may

be able to find a place closer to you

> if you need. We are now on Sub Q and have NO side effects and he

is more well than he has been in his whole life. It is so wonderful.

>

> BARBIE

>

> IVIG - really, really nervous...

>

> My son has to get IVIG and it seems there are some really nasty

side-

> effects. I'm kind of freaking out -- do most kids get headaches

and

> vomit?? Anyone had to give up on the IVIG due to side effects? I

heard

> that steroids prior to treatment may lessen the effect?

>

> I have to fly to CA for the treatment and I don't know if I should

try

> to get back the same day (to OR) or stay overnight? Any

> recommendations?

>

August 17, 2008