Re: subQ questions

July 2, 2008

, I want to reassure it is really very easy. My son is bipolar, has panic

attacks and severe anxiety. He was terrified. The needles are extremely small.

Only 6mm. We now use the 9mm so that it goes in a bit deeper. We also do not use

his abdomen because he says it hurts a lot more. I use his love handles on his

hips. I also have an agreement with him that I give it to him when he sleeps. He

knows it is going to happen but he just goes back to sleep now. I do still have

some times where he panics a little bit but we enventually get it in. Lucas had

IVIG for 6 years and I think really liked the attention he got with going to the

doctors office. This is sooooo low key because you JUST DO IT each week. My son

will not let me use emla anymore. He does not like the feeling of the cold and

numb and would prefer just getting the poke. My son is 110lbs so is larger

but..... we use 30cc per site on his hips and we no longer get any bumps at all.

So the

swelling is only in the first couple of months and then the tissue begins to

stretch and the bumps go away. Sometimes it get a bit red in the beginning and

then we now no longer even have that. I do get tired of getting up during the

night( early morning) to give it to him. But... that is my problem not his. I

think the greatest part of it is the simplicity and low techness of it all. It

just allows my son to feel much less tied up in the medical system. Feel free to

ask as many question as you have. I would NEVER go back to IVIg unless there

were no other choices. Also there are not reactions that I know of. Very

different than IV since it absorbs slowly and is much better tolerated. Also

another perk is his fatigue has gone away. We never have that 3rd week crash. He

has much fewer infections and he just feels better overall.

Hope this helps.

BARBIE

From: rfrench496 <bluemtnfarm@...>

Subject: subQ questions

Date: Wednesday, July 2, 2008, 6:43 AM

Okay, ladies, give it to me. We have loved our home infusion IVIG,

but last month was difficult and yesterday was a nightmare. It got

to the point yesterday where the back up nurse blew 3 veins and the

IV team from our hospital had to come and start his IV. They said

his veins were spasming and hard, couldn't advance the IV. It took 4

hrs to get the IV in. Not anxious to do that again. Our immuno said

we could try subQ for a month and see if we like it.

These are my questions/concerns:

1. Mark is very scared of the " shot " . I am concerned about giving

him 2 pokes in the belly every week, versus once a month. I just

have no idea which is better for him psychologically. Weekly or one

bad day a month?

2. Truly, how bad is the swelling with subQ? Mark is visual and I

am afraid a " goose egg " would scare him. If I gave it to him right

before bed, by morning it would be gone? Or don't give it before bed

because of reaction? Is there anything you can do to reduce

swelling/discomfort ?

3. He's a little guy, only 47 lbs. He has some belly fat (I can

pinch an inch) but no leg fat, really. Don't you have to rotate the

sites?

I would really appreciate your feedback. We need to make a decision

in the next few days to get it set up for next month, and I just

don't know what to do. I don't want to traumatize him like

yesterday, but I'm afraid to try something new and further traumatize

him. Who said being a mom was easy? They should come with great

giant arrows that say " this way! Do this so I turn out right! " .

Thanks, mom to Mark 7 CVID

July 2, 2008

Hi ,

sub q has been such a blessing in our house with 3 of us on immunoglobin. I

have had to go back to IVIG due to problems (very rare problems). BUT, the

girls, 6 and 8 have been on sub q for a little over 2 years now and are great

with it. Like IV, there are several choices of meds for Sub q.......there is

only one product that is FDA apprived for Sub q (vivaglobin) , but there are

many others that can also be used sub q and are in the process of FDA approval.

We started on viva, but found issues with the big, red, slow to absorb

bumps.....even after a year. We switched to gammunex and have never had bumps

and only a small amount of redness. Also, with any procedure, there are many

choices of catheter or needle systems to use. It is a matter of choice and

finding what you are comfortable with......it is a personal choice. We use

minimed catheters. The girls had limited sites with the steel needles as they

have very little body fat and we found that they irritated the muslce walls.

With the minimeds, you use an introducer needle that comes out immediateley and

leaves behind a flexible " straw " . The girls are so much more comfortable just

knowing that they have a " straw " and not a needle. At 8, Molly is able to

independently do much of her own procedures and we encourage this for both the

children....to be involved in their care. They are so funny now.....Molly helps

me start my IVs and loves to play nurse. Last night, I had several " procedures "

while attached to my IVIG ranging from cuticle care to massaging my feet, to

massaging my " cellulite cream " (consisting of a lovely massage with lavender

oil) on my arms and face.

At first, sub q may feel a bit overwhelming as you get used to it because it is

more frequent than IV. But now, for the kids, it is no different than brushing

their teeth and we have gotten so used to it that we can get an infusion

started, from start to finish, in about 2 minutes......very fast. The kids tuck

their pumps into the waistband of the shorts and off we go......they have gone

to disneyland while pumping.....to the Orange County marketplace.....to the

springs desert preserve gardens....the grocery store.....etc........It is so

much better than being glued to an IV pole all day.....feeling " mucky " from the

meds (no " muckiness " with subq).

Hope that helps.

Terri

subQ questions