Re: Subq question - Wenoka

January 13, 2005

Currently we do 2.5g 2x/week. We use 25cc sterile water to mix the 2.5g, so it

sounds like the same concentration. Are you using Gammagard S/D???

Wenoka

Re: Subq question - Wenoka

Wenoka what is the mixture. We have the 5 gm powder bottle of IgG and we

disolve 50 cc's of sterile water into it. It might be that the mixture

going into his skin is too thick or too concentrated and so it's burning to

his skin.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

January 13, 2005

Currently we do 2.5g 2x/week. We use 25cc sterile water to mix the 2.5g, so it

sounds like the same concentration. Are you using Gammagard S/D???

Wenoka

Re: Subq question - Wenoka

Wenoka what is the mixture. We have the 5 gm powder bottle of IgG and we

disolve 50 cc's of sterile water into it. It might be that the mixture

going into his skin is too thick or too concentrated and so it's burning to

his skin.

Ursula Holleman

mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

January 13, 2005

Yes

Ursula Holleman

mom to (12 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

/

Re: Subq question - Wenoka

>

> Currently we do 2.5g 2x/week. We use 25cc sterile water to mix the 2.5g,

> so it sounds like the same concentration. Are you using Gammagard S/D???

>

> Wenoka

January 13, 2005

Yes

Ursula Holleman

mom to (12 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

/

Re: Subq question - Wenoka

>

> Currently we do 2.5g 2x/week. We use 25cc sterile water to mix the 2.5g,

> so it sounds like the same concentration. Are you using Gammagard S/D???

>

> Wenoka

January 13, 2005

Well, at this point, Sam doesn't want to try to start it any faster than the

4ml. I don't have a problem with a slow start, it's no skin off my nose since

I'm at home and can take care of things around the house while the infusion is

going 8o) so I guess it's not a major issue. Perhaps he'll adjust to it

more over time and we can try a faster start later.

I'm thankful for the timing on it. Having that extra 2.5g on Sunday and again

yesterday was a real plus. The extra boost seems to have helped him kick the

bronchitis out pretty quickly. He was back in school today. (Yeah!)

Thanks for your replies.

God bless,

Wenoka

Re: Subq question - Wenoka

>

> Currently we do 2.5g 2x/week. We use 25cc sterile water to mix the 2.5g,

> so it sounds like the same concentration. Are you using Gammagard S/D???

>

> Wenoka

January 13, 2005

Well, at this point, Sam doesn't want to try to start it any faster than the

4ml. I don't have a problem with a slow start, it's no skin off my nose since

I'm at home and can take care of things around the house while the infusion is

going 8o) so I guess it's not a major issue. Perhaps he'll adjust to it

more over time and we can try a faster start later.

I'm thankful for the timing on it. Having that extra 2.5g on Sunday and again

yesterday was a real plus. The extra boost seems to have helped him kick the

bronchitis out pretty quickly. He was back in school today. (Yeah!)

Thanks for your replies.

God bless,

Wenoka

Re: Subq question - Wenoka

>

> Currently we do 2.5g 2x/week. We use 25cc sterile water to mix the 2.5g,

> so it sounds like the same concentration. Are you using Gammagard S/D???

>

> Wenoka

January 16, 2005

Hi Wenoka,

My son Conner (age 10) had some trouble with pain in the beginning

and I think it was Ursula who mentioned that sometimes slowing the

infusion for the first couple of cc's can help. Conner does 6gm of

Carimune diluted with 40cc sterile water. We have experimented with

adding and subtracting 5cc to change the dilution and he definitely

does better with more dilution. We start at 10cc/hour for the first

1cc, then 20cc/hour for the next 3ccs and then jump to 40cc/hour.

We are doing it in two sites, so technically it would be half that

rate/volume for a single site (right?). We have found that applying

an ice pack during the infusion helps a lot. It's my understanding

that none of these things - changes in dilution, rate, applying ice

or heat will change the effectiveness of the infusion. I also do

believe that there is some experimenting involved to get the most

comfortable rate and dilution, the nice thing is that the kids can

have some control over it. Conner's trough is also running around

800, his level prior to Carimune was 300. He's never done IVIG

except for the bolus he received when starting subq (and we hope to

never have to do that again!).

I was just curious as to why you're not doing two sites once a week,

instead of one site twice a week? I know that Conner would not

tolerate that at all. He HATES his infusions, he just wants to get

them over with. Is that the only way your doc does it or is that

just what Sam prefers?

Take care,

> Well, at this point, Sam doesn't want to try to start it any

faster than the 4ml. I don't have a problem with a slow start, it's

no skin off my nose since I'm at home and can take care of things

around the house while the infusion is going 8o) so I guess

it's not a major issue. Perhaps he'll adjust to it more over time

and we can try a faster start later.

>

> I'm thankful for the timing on it. Having that extra 2.5g on

Sunday and again yesterday was a real plus. The extra boost seems

to have helped him kick the bronchitis out pretty quickly. He was

back in school today. (Yeah!)

>

> Thanks for your replies.

>

> God bless,

>

> Wenoka

>

> Re: Subq question - Wenoka

>

> >

> > Currently we do 2.5g 2x/week. We use 25cc sterile water to

mix the 2.5g,

> > so it sounds like the same concentration. Are you using

Gammagard S/D???

> >

> > Wenoka

>

January 16, 2005

They are starting us off twice a week to see how Sam does. We have a " Y "

extension, so we are infusing the 2.5g to two sites. They may increase to 5g

1x/week, at which time we'll have a triple extension so we will infuse 3 sites.

I've heard that it is even better at keeping the trough levels even when it's

done a couple of times a week. It's twice the prep time for me, but I don't

mind that so much. So far, Sam has been VERY patient about doing it twice a

week. If he continues not to be bothered by the frequency and the levels are

better, we'll keep doing it this way. If it starts bugging him, we'll see about

switching.

So far, so good. But the last two times I've done it, the insertion needle has

been occluded. I would prime the lines, one line would be fine, the other

wouldn't prime and I'd have to replace the line from the extension " Y " down.

Argghh! Talk about frustration. Here I am priming, watching one flow through

just fine and the other not. The first time it happened, (of course, it

happened the first time I was starting the infusion on my own and the nurse was

late coming in to check on how I did) I thought that it might be the male

adapter, but when she arrived, the nurse checked it and it was clear. I thought

maybe something had simply cleared, but it happened the next time too. My

husband was here and he traced the block down to the insertion needle. Since it

did exactly the same thing, I suspect it was the same problem. I'm hoping that

it's not a trend. I plan on reporting it. Sometimes people don't and a problem

goes unresolved that ends up costing someone somewhere a lot of extra money.

I'm hoping I get less stressed as we do it more.

They were very particular about the 25cc of sterile water being used. When it

was mixed together, it came out to about 28cc in the Ig bottle. They told me

just to draw out 25cc of that and throw the rest away. !!!???!!! I know

that 3cc is not an immense amount, but still. This stuff is expensive and the

doc ordered 2.5g, which is what the Ig bottle says it contains. To me, it

didn't make sense not to use it all. So I called the immunologist's office to

doublecheck. Sure enough, his nurse checked with him. They said to draw out

everything in the bottle, we were supposed to be using the whole thing.

So, obviously, we're still working to get the kinks out, but we think we're

going to end up happy with it.

What is the concentration level of the Carimmune? Gammagard is normally 5% when

prepared for IV use (the whole 50cc of sterile water is used with the 2.5g Ig

for IV use) Using just the 25cc of water makes it a 10% solution. I've heard

that there is a 16% solution that is in use for more than just trials, but I

don't know the brand.

I guess I've rambled enough for now.