Re: Best product for SCIG?

[Guest guest]

Macey uses Gammagard S/D 10% and does fine.

Infusion before last she started sticking the needles in herself. We are so

proud of her. Also infusion before last her dad mixed and primed the meds

himself. I had a stomach bug and we didn't want me near the med or the

tubing. I answered questions from the living room while they did things in

the kitchen. At the end I went to the kitchen door and peered in to make

sure everything looked good. He set the pump and she stuck the needles and

did the tegaderm.

I feel so un-needed. NOT

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

>

> I'm seriously thinking at some point we will try SCIG again.

Conner was

> using Carimune and had a lot of pain and inflammation at the

sites, I wonder

> if it was due to the fact it was so thick. Are there products out

there

> that are a thinner solution that might work better?

,

Any of the products theoretically can be used for SCIG. However,

the 5% products are not recommended as too much volume is needed.

My son uses Gamunex. The problem is not what to use as much as what

is available. Tne new ZLB product that is coming out is going to be

a higher concentration much like baygam. However, only 7 companies

in the US will be allowed to carry it. No clinics or hospitals will

have it. That product will only come through home care companies.

Baygam has been renamed gamastan. It is suprising to me how many

people are able to get it though as it is the most expensive product

out there and many companies cannot afford to carry it. Any of the

products that come in powder form can be concentrated to a higher or

lower concentration depending on what you are trying to accomplish.

Most of the liquid products such as Gamunex and the new Gamaguard

liquid are 10%. Therefore, if you need 5 grams a week you would use

50 cc's a week. That makes the math really easy! The dose on each

product can also vary depending on the vial sizes that the product

comes in. For instance Gamunex comes in 1, 2.5,5 and 10 gram

vials.

Many patients have been taught to push the infusion. If the volume

is low enough and there is no pain, that is great. Some docs do it

because as was stated it seems to be a healthier way to go. Some

docs also do it because they think it's cheaper. Depending on the

company that is not necessarily true and in fact can be more

expensive because you are using more supplies. Some companies

include the cost of supplies and pump all into one price per gram.

Others try and get more by charging seperate for the pump and

supplies, which is perfectly legal and acceptable. The point is to

ask these questions and know how much of your cap is being spent and

why. The choice to use a pump or not is ultimately yours. Be aware

of your choices. As the child gets bigger the volume gets to be

more and the pump may then be a necessary option. If you know your

choices it's not a big deal to make the switch when a problem

arrises. That logic goes for anything associated with giving IgG.

Know the products, supplies and what not. Things change and you

don't want to be in crisis mode making decisions.

One more note when switching to SCIG, especially for a child, it's

still okay to use emla should the patient choose. Especially in a

child it does tend to decrease the anxiety about the needle. It can

also help with some of the initial stinging and itching that can be

felt in the beginning of an infusion.

Good luck!

Kris

[Guest guest]

" I feel so un-needed. NOT "

HAHAHAHAHA!!!!!!! That was funny!

>

> From: " Ursula " <uahollem1@...>

> Date: 2005/12/31 Sat AM 11:30:27 EST

> < >

> Subject: Re: Best product for SCIG?

>

>

[Guest guest]

The more I think about it, the more I suspect the Carimune is much thicker

than other products being used for SCIG, it is one with a very high sucrose

level. I think that may have been why Conner had so much pain. We were

unable to use the syringe driver with it, it was too thick! Conner had pain

throughout the entire infusion. We used Elamax for the sticks, but the

sites would become terribly red and swollen during the infusion. The slower

we went, the better it was, but when we stopped SCIG, it was taking over 4

hours to infuse 50cc (25 per site), every week. That's why Conner insisted

on switching to IVIG.

What products is everyone using? Conner has low IgA, but not absent.

Thanks again,

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency, antibody

deficiency, NK cell defect, and resolved adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

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

[Guest guest]

Hi, Kris!

My daughter uses Gamunex as well. I can't imagine having to work with a 16%

solution -- particulary after 's experience. LOL. Thanks for checking in

on us. I have been so busy and apologize for not getting back to you -- am just

going through a landslide of emails right now. la is doing fine right now

but the flu has hit our area fairly hard so we are hunkered down for a bit.

-

I am happy to know that your son is tolerating IVIg/S-Q treatment and am

hopeful that this year will bring your family much better health and happiness.

When the children are well, the parents are well. = )

Thanks so much to the whole group for supporting us.

Warm and well wishes to all,

(mom to 4 year old, low everything and doing well with Ig therapy).

mcfalls11 <k.mcfalls@...> wrote:

>

> I'm seriously thinking at some point we will try SCIG again.

Conner was

> using Carimune and had a lot of pain and inflammation at the

sites, I wonder

> if it was due to the fact it was so thick. Are there products out

there

> that are a thinner solution that might work better?

,

Any of the products theoretically can be used for SCIG. However,

the 5% products are not recommended as too much volume is needed.

My son uses Gamunex. The problem is not what to use as much as what

is available. Tne new ZLB product that is coming out is going to be

a higher concentration much like baygam. However, only 7 companies

in the US will be allowed to carry it. No clinics or hospitals will

have it. That product will only come through home care companies.

Baygam has been renamed gamastan. It is suprising to me how many

people are able to get it though as it is the most expensive product

out there and many companies cannot afford to carry it. Any of the

products that come in powder form can be concentrated to a higher or

lower concentration depending on what you are trying to accomplish.

Most of the liquid products such as Gamunex and the new Gamaguard

liquid are 10%. Therefore, if you need 5 grams a week you would use

50 cc's a week. That makes the math really easy! The dose on each

product can also vary depending on the vial sizes that the product

comes in. For instance Gamunex comes in 1, 2.5,5 and 10 gram

vials.

Many patients have been taught to push the infusion. If the volume

is low enough and there is no pain, that is great. Some docs do it

because as was stated it seems to be a healthier way to go. Some

docs also do it because they think it's cheaper. Depending on the

company that is not necessarily true and in fact can be more

expensive because you are using more supplies. Some companies

include the cost of supplies and pump all into one price per gram.

Others try and get more by charging seperate for the pump and

supplies, which is perfectly legal and acceptable. The point is to

ask these questions and know how much of your cap is being spent and

why. The choice to use a pump or not is ultimately yours. Be aware

of your choices. As the child gets bigger the volume gets to be

more and the pump may then be a necessary option. If you know your

choices it's not a big deal to make the switch when a problem

arrises. That logic goes for anything associated with giving IgG.

Know the products, supplies and what not. Things change and you

don't want to be in crisis mode making decisions.

One more note when switching to SCIG, especially for a child, it's

still okay to use emla should the patient choose. Especially in a

child it does tend to decrease the anxiety about the needle. It can

also help with some of the initial stinging and itching that can be

felt in the beginning of an infusion.

Good luck!

Kris

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]

Hi, Kris!

My daughter uses Gamunex as well. I can't imagine having to work with a 16%

solution -- particulary after 's experience. LOL. Thanks for checking in

on us. I have been so busy and apologize for not getting back to you -- am just

going through a landslide of emails right now. la is doing fine right now

but the flu has hit our area fairly hard so we are hunkered down for a bit.

-

I am happy to know that your son is tolerating IVIg/S-Q treatment and am

hopeful that this year will bring your family much better health and happiness.

When the children are well, the parents are well. = )

Thanks so much to the whole group for supporting us.

Warm and well wishes to all,

(mom to 4 year old, low everything and doing well with Ig therapy).

mcfalls11 <k.mcfalls@...> wrote:

>

> I'm seriously thinking at some point we will try SCIG again.

Conner was

> using Carimune and had a lot of pain and inflammation at the

sites, I wonder

> if it was due to the fact it was so thick. Are there products out

there

> that are a thinner solution that might work better?

,

Any of the products theoretically can be used for SCIG. However,

the 5% products are not recommended as too much volume is needed.

My son uses Gamunex. The problem is not what to use as much as what

is available. Tne new ZLB product that is coming out is going to be

a higher concentration much like baygam. However, only 7 companies

in the US will be allowed to carry it. No clinics or hospitals will

have it. That product will only come through home care companies.

Baygam has been renamed gamastan. It is suprising to me how many

people are able to get it though as it is the most expensive product

out there and many companies cannot afford to carry it. Any of the

products that come in powder form can be concentrated to a higher or

lower concentration depending on what you are trying to accomplish.

Most of the liquid products such as Gamunex and the new Gamaguard

liquid are 10%. Therefore, if you need 5 grams a week you would use

50 cc's a week. That makes the math really easy! The dose on each

product can also vary depending on the vial sizes that the product

comes in. For instance Gamunex comes in 1, 2.5,5 and 10 gram

vials.

Many patients have been taught to push the infusion. If the volume

is low enough and there is no pain, that is great. Some docs do it

because as was stated it seems to be a healthier way to go. Some

docs also do it because they think it's cheaper. Depending on the

company that is not necessarily true and in fact can be more

expensive because you are using more supplies. Some companies

include the cost of supplies and pump all into one price per gram.

Others try and get more by charging seperate for the pump and

supplies, which is perfectly legal and acceptable. The point is to

ask these questions and know how much of your cap is being spent and

why. The choice to use a pump or not is ultimately yours. Be aware

of your choices. As the child gets bigger the volume gets to be

more and the pump may then be a necessary option. If you know your

choices it's not a big deal to make the switch when a problem

arrises. That logic goes for anything associated with giving IgG.

Know the products, supplies and what not. Things change and you

don't want to be in crisis mode making decisions.

One more note when switching to SCIG, especially for a child, it's

still okay to use emla should the patient choose. Especially in a

child it does tend to decrease the anxiety about the needle. It can

also help with some of the initial stinging and itching that can be

felt in the beginning of an infusion.

Good luck!

Kris

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