RE: Ports question

[Guest guest]

>

> The decision is personal, it must be made with full knowledge.

Would I

> put in a port to start with? -- no, but some doctors do! Hope that

> helps and doesn't muddy the water too much.

Thanks for the input everyone. it will be interesting to see what the

doc says. I'll let you know what we decide. So I'm trying to prepare

my husband for all of this. ... can anyone give me a clue what IGIV

costs? I know it is expensive but have no idea what " expensive is

considered. " Thanks

Fritze

Ana 13mo, IgG, FTT

[Guest guest]

> So I'm trying to prepare

> > my husband for all of this. ... can anyone give me a clue what

IGIV

> > costs? I know it is expensive but have no idea what " expensive

is

> > considered. "

>

> , I have no idea what the cost is now. But our insurance

covered

> every penny of it -- no co-pay or anything. Everytime 's

employer

> changed insurance plans, we cringed, but we were always able to

find one

> of the plans that would pay 100% of the IVIG.

>

> In His service,

> dale

>

[Guest guest]

#5 they used to be recommended for patients that were having difficulty

with finding veins -- but now that recommendation has turned to Sub-Q.

I wanted to add that some doctors would rather infuse/transfuse through a

butterfly needle than to place a port. In our boys we not only have the low

IgG, but we have neutropenia and poor neutrophil chemotaxis (the neutrophils

they do have do not work properly and increase the risk of bacterial

infection) -- ph was taking 8, 9, 10 and even up to 11 pokes to get a

line in and we'd have NICU nurses come to place IVs. Our hem told the

nurses that he would infuse with a butterfly needle before he would

consider a port. The nurses drove us nuts always wanting to get a port for

J because he was such a hard stick. Infusion through a butterfly does take

longer, but it is doable. I realize that not everyone has multiple issues

like our boys - I'm explaining b/c of the butterfly option.

For us we had not only the chemotaxis factor come into play-we knew several

SDS kids who had ports and had to have several new ones placed because of

infection. They had serious infections including sepsis b/c of the port.

The other factor was that we have BOYS.and if they had ports, they would

have to limit activities like football and soccer which they love--

So even if SCIG isn't something for you/your child, there are alternatives

to ports. I know that many people have found them helpful--- I'm just

giving my .02 and our story... We are now doing SCIG and love it.

I also want to add that, like dale said, sometimes the moms and dads are

more traumatized by the IVS. Our ph never had a fear of going to the

hospital-he LOVED it because of Child-Life and the fun he was able to have.

Even when he got up to 11 sticks... once we got there, he did not want to

have the IV started (who does want one!?).and settled down as soon as it was

over...

Peace Be With You,

~Pattie~

Piedmont Triad, NC

Mom to , age 12 & healthy, , age 9, Shwachman-Diamond Syndrome

and ph, age 8, Shwachman-Diamond Syndrome

Our family website: www.shwachman.50megs.com

_____