honeymoons over:)

[Guest guest]

Hi guys,

so today we had our follow up with our ID guy who handles the kids

CVID. Savannah and Brennan were on IVIG for 2 and a half yrs, and

Donovan was on for 1 and a half, and after their June infusion, we

trialed off to get labs, see how their infection rate was, etc. The

summer was GREAT!! which was wonderful. Things started going

downhill in Sept, esp with Brennan.....right back to where he was

before IVIG....a new resp infection every other week, constantly

needing pred bursts and asthma treatment from the infections, he has

that LOOK that we all know and hate....the pale, pale face, with the

giant black and purple circles under his eyes......he's so tired, he

runs away and cries constantly if we even look at him wrong or correct

him at all(which is totally not his personality). Savannah hasnt had

many bacterial infections, but has had several viral deals and her

asthma has been really kicked up lately, in the last two weeks, she's

either had to come home from school or has stayed home from school due

to asthma flares at least 5 times. Donovan is still being treated for

a rash he's had for a YEAR(now....they think its staph.....everyone

who looks at it has a different opinion), but it was no better while

on IVIG, and other than that, he's had one sinus infection this fall

and hasnt done too bad.

We all felt the same regarding Brennan, this poor kid needs his IG

back!! I was a little surprised that Savannah is going to have to

restart......I think she was, too, bc she hasnt been really sick, or

even needed abx much. But bc her lung function already sucks, nobody

wants to take a chance on her getting any worse, as far as viruses

running her system down, asthma getting worse, and waiting for some

big bacterial mess to knock her down. So....we decided she will also

restart. Donovan....his numbers are also starting to drop, but he's

not too symptomatic yet....today we got them all pneumovax and initial

labs, and are going to try to wait a few weeks before starting Ig

again so we can get those labs quick.

We also had a long discussion about subq. We have never done it, and

the option was brought up. I really dont care to do this. I know that

I could do it, I just really dont care to play " nurse " with my

kids...and they have expressed that they would rather leave the

hospital stuff at the hospital and not have it at home. I would rather

only deal with it once a month than every week. I know that I would

not have help to do this, and all three kids doing this at home just

isnt really something Id rather do. Im also a bit concerned about the

distance we are.....we live in the sticks, with the nearest hospital

over 40 mins away....if any of the kids had a reaction......which has

happened to us before.....it would take forever to get them anywhere.

That aside, I offered to let Savannah choose. She hates IVIG, and

although before, she has said she would rather only do it once a month

and keep that stuff out of her house.....I still want her to be

informed she has this choice, and that I will support her if this is

something she chooses to do. Now that she has had this nice long break

from IG......Im worried, a little bit, that she will regress back into

the anxiety, baby talk, and zoning out and puking we had before with

IV's.......and it took therapy, a devel ped, and ativan for a yr to

get that settled. She's 11, and if she wants to do subq, I will let

her choose that, but right now, she's just thinking about it, and

wants to know a little more about it. I asked the drs today, if she

decided to try it....WHERE would we put it? she is already

underweight.....she has no fat, no chub anywhere....no love handles,

no thighs, no belly fat. They were also a little bit stumped, lol.

This is hard......harder than I expected. Its almost as hard to stop

for this long and have to restart, as it was to make the decision to

start IG in the first place. Her arm is REALLY sore from the

pnuemovax and she is incredily, and I mean......INCREDIBLY whiny and

acting like a baby. This is so frustrating!

I cant stand the thought of her reverting back to the screaming fits

and anxiety that we spent a yr working on already!!

valarie

mom to 3 w/cvid