Coming down from the SCIG Shocker.

[Guest guest]

Well, I have had 24 hours to stew over what happened. When we

switched to SCIG some 3 months ago, Molly was on 18g Octagam IVIG;

Maggie was on 15 and I was on 80 every three weeks. When we decided

to switch to subq, the docs decided to cut our dose in half on IVIG

for our last IV infusion a week before starting vivaglobin. The

equation for conversion is that you take your IVIG dose and divide

it into the weekly dose. You take that and divide it by .16 and

then take that answer and multiply it by 1.37. 1.37 grams of IVIG

is the equivelant of 1 gram of IVIG. The prescription for sent to

the docs by ZLB Behring omitted the IVIG conversion to Vivaglobin

which is not a 1 to 1 ratio. So we got our dose cut in half and

then, inadvertently cut it another 30% because the one part of the

equation was not on the form and no one caught it. So I am getting

about 1.4g/kg of Vivaglobin....way below a therpeutic level. The

girls are each getting about 30% less than what we thought they were

getting. So now, if Molly is to go up in her dose to what she

should have been getting, she needs to infuse 47cc of vivaglobin a

week and Maggie needs to infuse 42cc. Right now, they are getting

30 and 20 respectively....way below therapeutic levels. I am trying

to figure out if we can keep them on subq at the higher dose or if

we need to switch back to IV. Molly is 44 pounds and has little

fet...limited sites. Maggie is 40 lbs and also limited sites with

little subq fat.

I know that I am a wash....there is no way that I can stay on subq.

Does anyone know any PIDers that do IVs at home on their own without

a nurse? Caremark says that they do have several patients that do

their own IVs with the approval of the docs. I used to be a

paramedic and have stuck myself many times. I actually think I can

do a better job of starting an IV on myself that the nurses do. I

have never missed my own vein.

So I am looking for some feedback as to whether I should continue

the girls on SCIG or if we should alljust go back to IVIG?

Anyone?

Terri (mom, Molly and Maggie (4 and 6) CVIDers.

[Guest guest]

" ...there is no way that I can stay on subq. Does anyone know any PIDers that

do IVs at home on their own without a nurse?... I am looking for some feedback

as to whether I should continue

the girls on SCIG or if we should all just go back to IVIG? "

Terri,

Oh my! You guys have really been through the ringer with the SCIG procedures and

then having the dose amiss. I know that you have tried with all of your heart

to give SCIG a try. You went through so much with Molly and it sounds like you

had a positive breakthrough with her. Still, I know that she has been ill lately

and it stinks.

I don't know how to advise you but, of course, I will totally support whatever

decision that you make. If you choose to go back to IVIG, you may want to touch

base with Dayna. I know that there were some glitches when switching back and

forth (nothing insurmountable) but you might want a heads up. There are moms

that have done IVIG, then SCIG, and back/forth without a hitch.

Thanks for that conversion lesson. = ) I assume that you meant 1.37 g of SCIG

is equal to 1.0 g of IVIG, yes? I did speak with Dani's immuno about this

because, before Viva was approved, she was on SCIG and we were trying to figure

out how much she needed -- when going from IVIG to SCIG. He explained that the

FDA requires that the dose be increased because there may be some loss with SCIG

v. IVIG. However, (don't fall out of your chair...ready?) he did say that the

percent increase is not a hard and fast rule. In fact, in Europe they do not

consistently do an increase in percentage when converting from IVIG to SCIG.

And, to make things more confusing, some of the products might have higher or

lower absorption/effectiveness than others. So, for example, 13% Viva might

require a specific percent increase and another product such as 10% Gammagard

may have a different percent to increase for SCIG. I think we are still in the

learning stages with SCIG.

As you have so sweetly reminded me, you have to go by the clinical signs when

the numbers are unclear. I think the same thing is true with the dose. Given

that your dose was not consistent with the product insert's algorithm, AND you

are not feeling well, it does seem reasonable to re-calculate and adjust dosage.

If you decide to go with IVIG, well, that is another algorithm.

I recently met a mother whose daughter is also very thin and gets SCIG in her

behind. This is not what our nurse told me to do (my kiddo has fat on her

belly)...but it might be an option. As for your medic background, I can imagine

that this would help with IVIG. Our nurse sets up her patients on I.V. and then

leaves. Patients are trained to take out the I.V. At minimum, you could do

that. But, then your husband would not be able to stick you. LOL. You guys

are a riot! : )

Take good care,

mom to Dani, CVID

[Guest guest]

from dale

Terri, I am SO sorry this has happened. It's so important that we keep

ourselves informed and alert because medical mistakes like these are

becoming more and more common. Please, everyone learn from this and

stay active in know your dosage, how it is computed, your brand, your

lot-numbers, keep good records and keep asking questions!

Terri, a friend of mine did her own infusions. The only requirement

being that she not do it alone. She could do the IV herself, but had to

have a friend with her during the IV because of the danger of

side-effects. I would think as long as your girls are old enough to

dial 911 if you became incoherent -- you would be covered. Or you could

do it while hubby was home, etc. That said, many home health

companies start the IV, wait the first 15 minutes and then leave.

The side effects that we dealt with were always manageable and Katy

could have easily dealt with anything that came up.

I just saw your post that you are going to increase the dosage and

continue with SCIG. Best wishes at your doctor's appointment.

In His service,

dale

[Guest guest]

Terri,

My daughter used to get 20gm of Gammagard IV before switching to Sub-q. She

now gets 3gm diluted into 18cc's of saline (it comes out to be about 20cc's once

mixed) twice a week. We are only able to infuse in her abdomen due to her low

body fat so we do one side on Tuesdays and the other side on Saturdays. She has

actually been much healthier on Sub-q because we don't have that last week

before the IV where she would bottom out and get sick. Good luck finding what

is going to work for you guys. It sounds like you guys have really high doses

of gammagobulin which makes it much harder for you.

Kim, mom to , CVID

[Guest guest]

Terri- I will tell you this from personal experience, when your child is having

an anaphylactic reaction, your professional skills fly out the window.

Macey had an anaphylactic reaction during her first ever IVIG and while I wasn't

a basket case, I wasn't in nurse mode either. I worked pediatrics (PICU even)

and I was in full mom mode. The next time Macey ever quit breathing we were

already inpatient for a pseudomonas infection in her port and that turned into a

full code. I knew each and every doctor, nurse and respiratory person in the

room and I still was all mom. I questioned everything they were doing and was

lucky I wasn't booted out on my fanny. But regardless I had no concrete ideas

myself because that was my child on the bed and I couldn't control the outcome.

This said, both instances were at the hospital and the result of Macey's PID.

Macey has only had one infusion ever at home, she reacted then and it was

because her hematologist ordered it. None of her 3 immunos have ever taken the

risk of a home infusion. One immuno allowed none of his patients to home infuse,

so doing it without a nurse is mindblowing to me.

The idea of IVIG to me is that it is a blood product. Can you imagine someone

transfusing blood at home? Or platelets? I've not heard of it anywhere around

here.

Each patient is different. Each product is different. Your decisions should be

based on a clear understanding of the infusion protocol, resources available for

questions or concerns and available emergency routes if reactions occur. Long

detailed plans written out and discussed with your doctor should be done.

Good luck. Macey does 50 cc's of Viva (32 gms) in 2 sites (25 cc's each). She

does have large raised lumps after infusion but we do them in the early evening

over an hour (it use to be 2 hrs but she's gotten out of the " stinging " phase).

By the morning the lumps are gone. She has yet to have any skin or pigment

damage in the sites. We use her abdomen. Rotate spots each week. Actually

she's sticking herself now so she comes to me with two fingers on her stomach

and asks if those spots are ok. She's forced to stick to the left side of her

navel because she use to have a cecostomy tube on the right side and the stoma

scar is there.

Hope that helps.

Ursula - mom to (13) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

Hi Terri,

> Does anyone know any PIDers that do IVs at home on their own without

> a nurse?

I have XLA and have ran my own IGIV IVs for 15+ years. For the last

few years I've had a nurse start the IV, hep-lock it, then go

elsewhere to run it. I have someone else start me because the veins I

can access are getting old and scarred, and I want to save them for

times when I need the independence. So I start my own IVs when I'm

traveling, my IV day lands on a holiday, or the wait at the clinic is

too long.

Once my IV is running I'm pretty independent. How independent? I went

back to college recently, so I don't have time to be a couch potato

for three or four hours every other week to run my IV. I just haoul my

IV pole with me from class to class.

The point is running IVIG can run your life or not. Me: I run my IVs

slowly, which minimizes reaction risks, and live my life. But there

are things to keep in mind:

* As I said, I run my IVs s-l-o-w-l-y. I weigh 175lbs (about 80 kilos)

and infuse 20g of gammaglobulin over three hours or a bit more. Sure,

I could run it faster, but all I need is to have a bad day once and my

independence is gone.

* Bad days -- anaphalactoid risks -- are real. I have two Epi-Pen

automated epinephrine injectors taped to my IV pole. Never used them

except to inject poor hapless oranges with expired Epi-Pens so I can

train my friends on how to use them, just in case. And, just in case I

do have a bad day I'm always around peoplewho can call 9-1-1 if I

turned pretty colors or stop breathing. Often times the people I'm

around have been taught how to recognize anaphalactoid reactions and

use an Epi-Pen injector.

* Medication changes. Sometimes my regular IV supply isn't available.

If my second choice isn't, either, and I have to use something I

haven't used before or only use rarely I cut my losses and run the IV

at a clinic -- just to be safe.

* My IVs sometimes make me feel a little shaky, a little less focused.

This started getting worse a few years back, so I have stopped driving

on my IV days. I take the bus or hitch a ride with my wife or a friend

instead.

These are precautions, but in 23 years of running IVIG I have never

had an anaphalactoid reaction. Severe reactions are rare, but I know

they do happen. If one happens to me and I don't get the help I need

promptly, I will die. These are the things I do to set that risk as

low as possible while maintaining my independence. From my point of

view, that trade-off is worth it.

Now, as for sticking your own kids: Been there, done that (for

vaccinations), and hence forth Ivan The Terrible will do the sticks

before I do. It just ain't worth hunting for a vein and feeling bad

'cause you're hurting your own kid. Have a home-care nurse come over

and start the IV, or go to a clinic and have them do the stick

followed by a heparine flush so you can go home and run the IV while

watching your own TV.

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