Ports, chickenpox and depression

[Guest guest]

From Kirstie - Mum to Stef, Cam(CVID), Isaac and (CVID)

Firstly Ports - - at the age of 7 - has had (and lost) four ports. She

got her first one at six months of age, when we were down to using scalp

veins for her infusions. This only lasted a matter of weeks before it blew a

hole in the tubing and she had 50 mls of IVIG infused into the tissues in

her neck - not a pretty sight when she only weighed 9 pound!

Her second port lasted two years until her health deteriorated pretty

badly - her digestive system basically stopped working after she got

rotovirus and RSV at the same time. During a bowel biopsy the bacteria

(acinetobactor sp?) got into her blood stream, it ended up colonising her

port - we did clear that infection, but she got a further septicemia about

two weeks later with two different bacteria ( she had played with the end of

her port connection, taken off he lure plug and sucked it!), she then went

into bacteremic shock and was in PICU and the port was pulled. She had a

PICC line in until she was able to have another port after two weeks on

vanc. That port lasted a couple of years until it clotted and couldn't be

cleared. She lost her fourth port last Christmas because of repeated staph

infections. She is prone to blood infections with or without a port, so it

was always going to be risky for her to have one, but the state of her veins

for access was pretty awful (practically impossible). She doesn't have one

now, we are trying to keep her off IVIG over summer here to see how she is -

so far not so good, she has a temp of 103 this morning and is not at all

well, we are five weeks out from her last infusion. We really want to get

her through a couple of months so we can test her immune function more

thoroughly. Our main fear with her off it is actually that the autoimmune

problems she deals with with flare up, although that may tell us exactly

what she is dealing with, at the moment she is diagnosed as having an

undifferentiated connective tissue disorder, but our immunologist feels that

the IVIG is masking it.

Cameron and ports is a much better story, if I only had his experience to go

on I would recommend them to all and sundry. He got his first one when he

was 2, this was removed when he was seven, as we thought his immune system

was improved and that he would no longer need IVIG. Two years later he was

restarted on IVIG and had another port put in, this has been in almost four

years now and has never caused a problem. So I guess I have seen both sides

of the story, I would not hesitate to have another port for Cam if his needs

replacing, but I would have to think very hard before would get

another one. Her first battle with septicemia was life threatening, and I

would hate to put her or us through that again because of a decision we

would make for her.

On chicken pox, we have had the same argument on this one, Cam actually got

chicken pox when he was seven and off IVIG, we didn't find out that he had

been exposed until it was too late, so he didn't get the ZIG, he responded

really well to the antiviral, the first three spots he got were the only

ones, his IgG level at the time was only 2.1. The protocol here now is that

if you are on IVIG you don't need ZIG as you should be covered from the

antibodies already present in the IVIG, there have been no cases of children

on IVIG getting chickenpox since this was changed, so I guess it works.

We were pretty worried about Cameron's state of mind last year, he is 12 and

was getting pretty upset about not being able to keep up with his friends,

it is an age where you don't like to be different, we did a lot of talking

about it, spent a lot of time with his teacher. We got through it without

medication, but I certainly would have gone down that road if we had to. He

is much happier now, has a couple of really close friends who know about his

health problems, but he generally keeps that side of his life to himself - I

respect his feelings in that and don't discuss his health with my friends,

many of whom have children his age.

Well better get going, is coming to work with me today - I work with

a friend in an office at her house, so will go to bed there and watch

her videos.

Talk to you all later - sorry I don't get to write as often as I would like.

Kirstie