Re: subq ?

[Guest guest]

In a message dated 7/17/2005 5:36:57 P.M. Eastern Daylight Time,

yhwhworship@... writes:

We put EMLA cream on two infusion sites

Speaking of Emla. If your child gets IVIG and is a hard stick do not use

Emula cream. It shrinks the veins and makes it harder yet! The last nurse at

the

hospital told us that. We were using that because Britt was a hard stick and

here we were defeating our purpose this whole time:( I thought I'd pass

that along.

Janet

[Guest guest]

Jerri,

Sam is 8 1/2. He started IVIG at 17 months. We switched to subq at the

beginning of this year.

The same Ig products are used that are used for IVIG. Instead of being

administered into the vein, it is infused into the subcutaneous tissue between

the skin and the muscle (which is why having some body fat helps with the

absorption). Sam previously received 20g via IV 1x every 28 days. He now

receives 2.5g 2x/week subq. We use Gammagard S/D, which comes in powdered form.

If it were being used IV, they would add 50cc sterile water to the powder to

make a 5% solution, but only use 25cc to make a 10% solution for the subq.

It is a simple procedure that we do at home:

To mix the Ig, we add the 25cc sterile water and slowly swirl it until it is

completely dissolved (note: there are some products that come in liquid form and

are kept in the refrigerator until ready for use. Also, some products - I

believe Baygam - comes in liquid form and is 16% solution, which means less

quantity to be infused and less preparation).

We put EMLA cream on two infusion sites on his thigh (we rotate thighs) an hour

before the infusion.

Supplies:

Big syringe & needle (the needle is only used to draw out the sterile water and

add it to the powder, and then to draw the Ig solution back out when it is

mixed)

CADD prism pump

Cassette (which holds the Ig solution)

" Y " extender (which splits the tube that comes from the cassette, so that we can

have two infusion sites - quicker infusion time and less quantity infused per

site)

Two little adapters

2 tubes and have tiny little subq needles at the end.

Pull Ig out of bottle with syringe & needle, push med into the cassette (using

just the syringe, the needle twists on and off and all the tubing have the twist

on entries)

Connect the cassette tube to the " Y " extender, which I've already connected to

the little male/female adapter, and the adapter then connects to the tubes with

the subq needles. Connect the cassette to the pump, prime (pump the medicine

all the way through) the tubing before inserting the needles.

Wipe off the EMLA, disinfect infusion sites with alcohol, wait til dry, insert

needles, start pump, increase speed of pump as tolerated (we start at 4ml, wait

til it has pushed twice, then increase to the maximum of 30ml. Note: the 30ml

maximum actually goes in at 15ml because of using the 2 infusion sites.) It

takes about an hour to complete the infusion. The first couple of bursts of

meds stings, but I notice that after that it never hurts him unless he happens

to be able to hear the pump. We try to wait until he is asleep to do it, which

works great during school with the earlier bedtime, but hasn't worked as well

over the summer.

They are going to try out a different pump. I think that it will simply push

the same syringe that we use to draw the meds out of the bottle, so there will

be one less step involved in set up and more complete use of product.

Sam's last IgG level was 1030. We've never been over 1000. In fact, I don't

think we've ever gone too much over 800.

Well, there is a thunderstorm sitting over us right now, so I'd better sign off.

Hope I haven't been too wordy with this.

God bless,

Wenoka

subq ?

Only part of 's blood work was back on friday. Everything except the

IGa was normal. IGa was 28, it was 14 the last time they did blood work which

was 2 years ago. Pat, his nurse said that normal was between 64 and 200 I

think. Anyway, the antibody levels aren't back yet. Which is what we really

need to see, specifically pneumonia antibodies.

has been getting IVIG since she was almost 7 and is now almost 12.

The home health care nurse has always tried to alternate between her arms and

has done her hand once. She has some scarring they say in her previously good

vein in one of her arms. If IVIG may be a life long treatment for her there is

no way she can continue it in her veins indefinitely.

I really don't understand exactly (I need specifics) how subq works. How it

is administered? Can someone who does not have medical training( other than by

fire) do it?

Also, I have heard about ports from a nurse if it comes to that. But in the

same breathe she said they can be sites of infections etc....

Can anybody tell me what the alternatives are to intravenous?

Thanks

Jerri

Mom to 11, Selective Antibody Deficiency

and ph 5, mild asthma

[Guest guest]

How do you know that you have the needle in the right place?

Did your doctor or nurse train you to do this the first time? I definitely would

not want to try this without some supervision the first few times.

We also use Gammagard S/D. I do the mixing here at home about an hour before

the nurse arrives.

Jerri

Wenoka & <yhwhworship@...> wrote:

Jerri,

Sam is 8 1/2. He started IVIG at 17 months. We switched to subq at the

beginning of this year.

The same Ig products are used that are used for IVIG. Instead of being

administered into the vein, it is infused into the subcutaneous tissue between

the skin and the muscle (which is why having some body fat helps with the

absorption). Sam previously received 20g via IV 1x every 28 days. He now

receives 2.5g 2x/week subq. We use Gammagard S/D, which comes in powdered form.

If it were being used IV, they would add 50cc sterile water to the powder to

make a 5% solution, but only use 25cc to make a 10% solution for the subq.

It is a simple procedure that we do at home:

To mix the Ig, we add the 25cc sterile water and slowly swirl it until it is

completely dissolved (note: there are some products that come in liquid form and

are kept in the refrigerator until ready for use. Also, some products - I

believe Baygam - comes in liquid form and is 16% solution, which means less

quantity to be infused and less preparation).

We put EMLA cream on two infusion sites on his thigh (we rotate thighs) an hour

before the infusion.

Supplies:

Big syringe & needle (the needle is only used to draw out the sterile water and

add it to the powder, and then to draw the Ig solution back out when it is

mixed)

CADD prism pump

Cassette (which holds the Ig solution)

" Y " extender (which splits the tube that comes from the cassette, so that we can

have two infusion sites - quicker infusion time and less quantity infused per

site)

Two little adapters

2 tubes and have tiny little subq needles at the end.

Pull Ig out of bottle with syringe & needle, push med into the cassette (using

just the syringe, the needle twists on and off and all the tubing have the twist

on entries)

Connect the cassette tube to the " Y " extender, which I've already connected to

the little male/female adapter, and the adapter then connects to the tubes with

the subq needles. Connect the cassette to the pump, prime (pump the medicine

all the way through) the tubing before inserting the needles.

Wipe off the EMLA, disinfect infusion sites with alcohol, wait til dry, insert

needles, start pump, increase speed of pump as tolerated (we start at 4ml, wait

til it has pushed twice, then increase to the maximum of 30ml. Note: the 30ml

maximum actually goes in at 15ml because of using the 2 infusion sites.) It

takes about an hour to complete the infusion. The first couple of bursts of

meds stings, but I notice that after that it never hurts him unless he happens

to be able to hear the pump. We try to wait until he is asleep to do it, which

works great during school with the earlier bedtime, but hasn't worked as well

over the summer.

They are going to try out a different pump. I think that it will simply push

the same syringe that we use to draw the meds out of the bottle, so there will

be one less step involved in set up and more complete use of product.

Sam's last IgG level was 1030. We've never been over 1000. In fact, I don't

think we've ever gone too much over 800.

Well, there is a thunderstorm sitting over us right now, so I'd better sign off.

Hope I haven't been too wordy with this.

God bless,

Wenoka

subq ?

Only part of 's blood work was back on friday. Everything except the

IGa was normal. IGa was 28, it was 14 the last time they did blood work which

was 2 years ago. Pat, his nurse said that normal was between 64 and 200 I

think. Anyway, the antibody levels aren't back yet. Which is what we really

need to see, specifically pneumonia antibodies.

has been getting IVIG since she was almost 7 and is now almost 12.

The home health care nurse has always tried to alternate between her arms and

has done her hand once. She has some scarring they say in her previously good

vein in one of her arms. If IVIG may be a life long treatment for her there is

no way she can continue it in her veins indefinitely.

I really don't understand exactly (I need specifics) how subq works. How it

is administered? Can someone who does not have medical training( other than by

fire) do it?

Also, I have heard about ports from a nurse if it comes to that. But in the

same breathe she said they can be sites of infections etc....

Can anybody tell me what the alternatives are to intravenous?

Thanks

Jerri

Mom to 11, Selective Antibody Deficiency

and ph 5, mild asthma

[Guest guest]

What does your son say about the initial discomfort of the needle insertion.

Did he prefer the IVIG route or does he seem to prefer the subcutaneous method.

What about side effects.

Wenoka & <yhwhworship@...> wrote:

Jerri,

Sam is 8 1/2. He started IVIG at 17 months. We switched to subq at the

beginning of this year.

The same Ig products are used that are used for IVIG. Instead of being

administered into the vein, it is infused into the subcutaneous tissue between

the skin and the muscle (which is why having some body fat helps with the

absorption). Sam previously received 20g via IV 1x every 28 days. He now

receives 2.5g 2x/week subq. We use Gammagard S/D, which comes in powdered form.

If it were being used IV, they would add 50cc sterile water to the powder to

make a 5% solution, but only use 25cc to make a 10% solution for the subq.

It is a simple procedure that we do at home:

To mix the Ig, we add the 25cc sterile water and slowly swirl it until it is

completely dissolved (note: there are some products that come in liquid form and

are kept in the refrigerator until ready for use. Also, some products - I

believe Baygam - comes in liquid form and is 16% solution, which means less

quantity to be infused and less preparation).

We put EMLA cream on two infusion sites on his thigh (we rotate thighs) an hour

before the infusion.

Supplies:

Big syringe & needle (the needle is only used to draw out the sterile water and

add it to the powder, and then to draw the Ig solution back out when it is

mixed)

CADD prism pump

Cassette (which holds the Ig solution)

" Y " extender (which splits the tube that comes from the cassette, so that we can

have two infusion sites - quicker infusion time and less quantity infused per

site)

Two little adapters

2 tubes and have tiny little subq needles at the end.

Pull Ig out of bottle with syringe & needle, push med into the cassette (using

just the syringe, the needle twists on and off and all the tubing have the twist

on entries)

Connect the cassette tube to the " Y " extender, which I've already connected to

the little male/female adapter, and the adapter then connects to the tubes with

the subq needles. Connect the cassette to the pump, prime (pump the medicine

all the way through) the tubing before inserting the needles.

Wipe off the EMLA, disinfect infusion sites with alcohol, wait til dry, insert

needles, start pump, increase speed of pump as tolerated (we start at 4ml, wait

til it has pushed twice, then increase to the maximum of 30ml. Note: the 30ml

maximum actually goes in at 15ml because of using the 2 infusion sites.) It

takes about an hour to complete the infusion. The first couple of bursts of

meds stings, but I notice that after that it never hurts him unless he happens

to be able to hear the pump. We try to wait until he is asleep to do it, which

works great during school with the earlier bedtime, but hasn't worked as well

over the summer.

They are going to try out a different pump. I think that it will simply push

the same syringe that we use to draw the meds out of the bottle, so there will

be one less step involved in set up and more complete use of product.

Sam's last IgG level was 1030. We've never been over 1000. In fact, I don't

think we've ever gone too much over 800.

Well, there is a thunderstorm sitting over us right now, so I'd better sign off.

Hope I haven't been too wordy with this.

God bless,

Wenoka

subq ?

Only part of 's blood work was back on friday. Everything except the

IGa was normal. IGa was 28, it was 14 the last time they did blood work which

was 2 years ago. Pat, his nurse said that normal was between 64 and 200 I

think. Anyway, the antibody levels aren't back yet. Which is what we really

need to see, specifically pneumonia antibodies.

has been getting IVIG since she was almost 7 and is now almost 12.

The home health care nurse has always tried to alternate between her arms and

has done her hand once. She has some scarring they say in her previously good

vein in one of her arms. If IVIG may be a life long treatment for her there is

no way she can continue it in her veins indefinitely.

I really don't understand exactly (I need specifics) how subq works. How it

is administered? Can someone who does not have medical training( other than by

fire) do it?

Also, I have heard about ports from a nurse if it comes to that. But in the

same breathe she said they can be sites of infections etc....

Can anybody tell me what the alternatives are to intravenous?

Thanks

Jerri

Mom to 11, Selective Antibody Deficiency

and ph 5, mild asthma

[Guest guest]

Jerri - remind me, has been off her IVIG before the labs were run?

If so for how long?

Ursula Holleman

mom to (12 yrs old) and Macey (10 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

/

[Guest guest]

They show you the areas that are best used. There is quite a bit of leeway on

the upper thighs.

A nurse came out and set it up the first time. I did most of it the 2nd time

and she just watched the 3rd time. She would have come out as many times as

necessary until I felt comfortable doing it myself.

If you're already mixing the Gammagard yourself, that's half of it right there.

The pump is very easy to program and the tubes are simple to hook up. And if

there is a problem after you've been trained, someone is available at a helpline

24/7.

The only problem we ever had was when we has a soft set, which used a needle to

set a short plastic catheter, then the needle was pulled out. We had problems

with the catheter slipping and leakage. I had to switch out a line 2 or 3

times. Since we've gone with the subq needle instead of a sof-set catheter, we

haven't had any leakage at all.

God bless,

Wenoka

Re: subq ?

How do you know that you have the needle in the right place?

Did your doctor or nurse train you to do this the first time? I definitely

would not want to try this without some supervision the first few times.

We also use Gammagard S/D. I do the mixing here at home about an hour before

the nurse arrives.

Jerri

[Guest guest]

The needle insertion is not uncomfortable other than psychologically. He only

feels it when he is looking. If he is looking the other way, he doesn't feel it

at all due to the EMLA. The only real discomfort he experiences is with the

first one or two burst of the meds. That burns a bit, but wears off quickly.

It's hard to say which he prefers. I think he liked the special day of going to

Children's, followed by Chuck E Cheese. But - especially when he is asleep -

the subq involves way less of his time and when he is awake, he is pretty mobile

as the pump has a little carrier case that straps over his shoulder. He likes

it that he can move around easily when he is awake. We usually try to put the

EMLA on and send him to bed. That way, unless he happens to wake up when I'm

pulling off the tegaderm, he pretty much sleeps through the whole thing. If I

set the needles and wait til he drifts back off to start the pump, he doesn't

even feel the initial burst.

I guess it's a toss up as to which he prefers. But he likes it that he hasn't

had any sinus breakthrough infections since the subq.

Hope this helps.

Wenoka

subq ?

Only part of 's blood work was back on friday. Everything except the

IGa was normal. IGa was 28, it was 14 the last time they did blood work which

was 2 years ago. Pat, his nurse said that normal was between 64 and 200 I

think. Anyway, the antibody levels aren't back yet. Which is what we really

need to see, specifically pneumonia antibodies.

has been getting IVIG since she was almost 7 and is now almost 12.

The home health care nurse has always tried to alternate between her arms and

has done her hand once. She has some scarring they say in her previously good

vein in one of her arms. If IVIG may be a life long treatment for her there is

no way she can continue it in her veins indefinitely.

I really don't understand exactly (I need specifics) how subq works. How it

is administered? Can someone who does not have medical training( other than by

fire) do it?

Also, I have heard about ports from a nurse if it comes to that. But in the

same breathe she said they can be sites of infections etc....

Can anybody tell me what the alternatives are to intravenous?

Thanks

Jerri

Mom to 11, Selective Antibody Deficiency

and ph 5, mild asthma

[Guest guest]

Jerri,

Ports became pretty popular before sub q really started on the

market. There are many schools of thought on this. Some docs are

dead set against them and even go so far as to crusade against

them. However, in most cases, they have never had to hold their own

child down while someone sticks in one needle after another trying

to get vein access. Having said that infections and rejections do

happen with a port and is always a risk. However, it has not been

my experience. Both of my boys have had ports and neither has had

any infections. I have accessed them for many years. I am very

careful and have been well trained in aseptic techniques to insure

the risk of infection is minimal. The port has made life so much

easier and was worth it for us. Now that my boys are older, one is

considering sub q and in fact is going to try it after his next

infusion. He is leaving for college and wants to be more

independent. He has not had to rely on a nurse or go to a clinic

for infusions most of his life and does not want to start now. Also

his port has now been in for 7 years and is probably near the end of

it's useability. If for some reason sub q is too much for him he

has said he will continue to use his port and if need be get another

one. My other son is also leaving for college. He has looked into

the sub q and wants nothing to do with it. He is going to be close

enough to home that he can come home every three weeks and still

have me do his IV. Two years ago he tried going back to peripherals

but his veins collapsed and he infilitrated every time. He was

having to have his gallbladder out anyway so he had a port put back

in at that time. It is a personal choice that should be made with

eyes wide open and with the support of your child's physician and if

apprpriate age, your child.

As for sub q, I've seen and heard many wonderful things. However,

as with IV sites sub q sites need rotating as they too can become

hard and need a break. It is important to not over use one site and

to keep rotating them. There is a new sub q med that is coming out

soon being put out by ZLB. It is a higher concentration at 16% and

therefore, will men less fluid. However, with your childs IgA

problem she may not be a candidate for it.

When starting the sub q, make sure your nurse has experience with

it. There are many just learning about it. The last thing you want

with a child is to have someone just learning and have a bad

exerieince with a child. There are a lot of people out there saying

there are doing sub q but truth be told are just looking for new

clients to start with. So don't just ask if they do sub q ask how

many patients they have done. For that matter that goes for any

medical procedure and any medical professional.

Sounds like you are doing a nice job researching and asking all the

questions you can. Your child can only benifit.

Take care,

Kris Mom to 2 CVID young men

> Only part of 's blood work was back on friday. Everything

except the IGa was normal. IGa was 28, it was 14 the last time they

did blood work which was 2 years ago. Pat, his nurse said that

normal was between 64 and 200 I think. Anyway, the antibody levels

aren't back yet. Which is what we really need to see, specifically

pneumonia antibodies.

>

> has been getting IVIG since she was almost 7 and is now

almost 12. The home health care nurse has always tried to alternate

between her arms and has done her hand once. She has some scarring

they say in her previously good vein in one of her arms. If IVIG

may be a life long treatment for her there is no way she can

continue it in her veins indefinitely.

>

> I really don't understand exactly (I need specifics) how subq

works. How it is administered? Can someone who does not have

medical training( other than by fire) do it?

> Also, I have heard about ports from a nurse if it comes to that.

But in the same breathe she said they can be sites of infections

etc....

>

> Can anybody tell me what the alternatives are to intravenous?

>

> Thanks

>

> Jerri

> Mom to 11, Selective Antibody Deficiency

> and ph 5, mild asthma

>

>

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

> Start your day with - make it your home page

>

>

[Guest guest]

Thanks I will keep that in mind. I was not aware of that.

BBsmart2@... wrote:

In a message dated 7/17/2005 5:36:57 P.M. Eastern Daylight Time,

yhwhworship@... writes:

We put EMLA cream on two infusion sites

Speaking of Emla. If your child gets IVIG and is a hard stick do not use

Emula cream. It shrinks the veins and makes it harder yet! The last nurse at

the

hospital told us that. We were using that because Britt was a hard stick and

here we were defeating our purpose this whole time:( I thought I'd pass

that along.

Janet