Re: SCIG: Novice need help. = )

[Guest guest]

>1. Do any of you use a small pump (e.g., 1 " x 3 " x 8 " or so electronic

>syringe driver)?

We tried using the Graseby's syringe driver, but couldn't get enough

pressure to push the very thick Carimune through. We then went to the

Baxter 6060 pump. It's pretty small, Conner wore it in a small backpack, I

can email you a picture of it if you'd like.

>2. If so, what is your favorite brand? Where did you purchase it? Did

>you pay out of pocket or go through insurance?

Our infusion company charged a rental fee to our insurance company, we just

paid a $15 copay once a month for supplies.

>3. Is anyone using a 10% solution such as Gamunex? Is it reasonable to do

>SCIG with this low of a concentration, or not?

How much fluid would that be? We usually didn't do more than 25cc per site

and used two sites. You could use a third site, if necessary. We used a

15% solution of Carimune, which was about 50cc.

We recently switched back to IVIG at Conner's request, but I suspect he will

go back on SCIG at some point. Let us know if you have any other questions

or need more specific supply info.

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

immunodeficiency-SCIG, and now 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!)

[Guest guest]

-

We are also considering switching, because of ' severe headaches, and we

are going super slow. Why are you thinking of switching if you don't mind me

asking.

We attended the SCIG portion of the IDF confrence which was very helpful. Have

you checked online to see if the notes from that are available yet?

Dayna

SCIG: Novice need help. = )

Parents doing SCIG (subcutaneous IgG infusions). This is here.

We need to try SCIG with our daughter. I could really use some help from all

you early innovaters. Here are my questions:

1. Do any of you use a small pump (e.g., 1 " x 3 " x 8 " or so electronic

syringe driver)?

2. If so, what is your favorite brand? Where did you purchase it? Did you

pay out of pocket or go through insurance?

3. Is anyone using a 10% solution such as Gamunex? Is it reasonable to do

SCIG with this low of a concentration, or not?

Any other ideas or suggestions are welcome.

Thanks!

[Guest guest]

Schulman <dietdoc@...> wrote:

1. Do any of you use a small pump (e.g., 1 " x 3 " x 8 " or so electronic syringe

driver)? 2. If so, what is your favorite brand? Where did you purchase it?

Did you pay out of pocket or go through insurance?

, we use a CADD Prism. It is rented as part of our home health services.

I dont think that it is the same as you described above. It works really well

and is easy to use.

3. Is anyone using a 10% solution such as Gamunex? Is it reasonable to do SCIG

with this low of a concentration, or not?

We use Gammagard S/D reconstituted at 10%. Calvin gets 12.5g per 4 weeks. We

do that in 5 doses of 2.5g reconstituted to 25(really 28)ml. We use a Y

connector with two sites and pump at 12ml/hr per site. It takes an hour to pump

the medicine in----a little longer to get ready/mix the IG and to finish up at

the end.

I hope this helps....SubQ has been a blessing to us. HOpe all goes well as you

start out.

Fisher

mom of Calvin, 4yo, XLA

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

Start your day with - make it your home page

[Guest guest]

My son recently switched to SCIG using Gamunex. He has rarely had

to have a nurse before switching. However, he was heading off to

college and did not want to go back to having a nurse or deal with

going to a clinic. He is now quite successful and totally

independent with SCIG using the Graseby pump. The gamunex does

require more volume as it is a 10%, however, it works just fine.

Theoretically any of the gamma products can be used but less than

10% solution is not really a good idea. My son plans to switch to

the ZLB product as soon as it is approved.

There is a new pump that has been used in Europe and is about to be

FDA approved here. It is the Chrono pump developed specifically for

SCIG. It will be able to handle to viscosity of any of the drugs

out there.

There is also another much cheaper pump called the Freedom 60. It

is a wind up pump, much larger in size. It's about $225 versus

$3000 for the new one coming out and more so for a CADD. The rate

on the Freedom 60 is determined by the size of the tubing used. It

cannot go as fast as the syringe pump but is affective in getting

the medicine in. My son calls it a " Fisher Price " toy.

The most important thing is to get the proper training. I've seen

too many people give up on SCIG becuase they were inadequately

trained. Ask who ever does the training, not just do they do the

training but how many times they have done it. How many patients do

they currently have on it. Make sure you are getting quality

training. It is essential in making SCIG successful.

I hope that helps.

Kris

> Parents doing SCIG (subcutaneous IgG infusions). This is

here.

>

> We need to try SCIG with our daughter. I could really use some

help from all you early innovaters. Here are my questions:

>

> 1. Do any of you use a small pump (e.g., 1 " x 3 " x 8 " or so

electronic syringe driver)?

> 2. If so, what is your favorite brand? Where did you purchase

it? Did you pay out of pocket or go through insurance?

> 3. Is anyone using a 10% solution such as Gamunex? Is it

reasonable to do SCIG with this low of a concentration, or not?

>

> Any other ideas or suggestions are welcome.

>

> Thanks!

>

>

>

[Guest guest]

Most insurance companies have what is called a DME benefit. Meaning

Durable Medical Equipment. If your company wants to purchase the

pump it would come out of the DME. Many inusrance companies however

prefer to rent the pump so as not to pay for maintenance. Also many

homecare companies and specialty pharmacies will include the cost of

renting the pump in the over cost of the service. If your insurance

company will not provide coverage for the pump, with the exceptions

of HMO's, medicare and medicaid, the company providing the service

will agree to write off the cost of the pump rental if asked to do

so.

I hope that helps.

Kris

>

>

> 1. Do any of you use a small pump (e.g., 1 " x 3 " x 8 " or so

electronic syringe driver)? 2. If so, what is your favorite brand?

Where did you purchase it? Did you pay out of pocket or go through

insurance?

>

> , we use a CADD Prism. It is rented as part of our home

health services. I dont think that it is the same as you described

above. It works really well and is easy to use.

>

> 3. Is anyone using a 10% solution such as Gamunex? Is it

reasonable to do SCIG with this low of a concentration, or not?

>

>

> We use Gammagard S/D reconstituted at 10%. Calvin gets 12.5g per

4 weeks. We do that in 5 doses of 2.5g reconstituted to 25(really

28)ml. We use a Y connector with two sites and pump at 12ml/hr per

site. It takes an hour to pump the medicine in----a little longer to

get ready/mix the IG and to finish up at the end.

>

>

> I hope this helps....SubQ has been a blessing to us. HOpe all

goes well as you start out.

>

>

>

> Fisher

>

> mom of Calvin, 4yo, XLA

>

>

>

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

> Start your day with - make it your home page

>

>