Update, previous bad reactions, ganglion cysts

[Guest guest]

Hi,

I am delighted that I am able to gain such valuable info from this

group. I have a 10 year old that had been having vomiting headaches

with Polygam but now happy to report that we have finished our 7th

infusion today with Gamunex and she is basically reaction free.

Still having trouble with making it mostly healthy the third week

before the next infusion. She has had the fever, cough, congestion

the last couple of days, looking to see the infusion help with

that. Do the third week blues improve as more infusions go past? I

feel very very lucky that there are no severe effects so we get

optimum health for a decent 2 to 2 1/2 weeks!!

My daughter (age 10) has what they think is ganglion cysts on the

top of her foot. Is that an everbody thing or a pid thing (she has

hypogam). We have it looked at in a week or so, my guess it may

cause more trouble to do something with it, so leaving it be may be

a better option. How have you all in the community let your

preteens make some of the medical decisions so they get a sense of

control? I'm getting a lot of the - I'm not taking my pills and

I'm not going to the doctor! Thanks for your expertise...hope all

kids out there are doing well and for those feeling badly get better

soon.

Beth A

[Guest guest]

tulip71295 wrote:

> Hi,

>

> I am delighted that I am able to gain such valuable info from this

> group. I have a 10 year old that had been having vomiting headaches

> with Polygam but now happy to report that we have finished our 7th

> infusion today with Gamunex and she is basically reaction free.

> Still having trouble with making it mostly healthy the third week

> before the next infusion. She has had the fever, cough, congestion

> the last couple of days, looking to see the infusion help with

> that. Do the third week blues improve as more infusions go past? I

> feel very very lucky that there are no severe effects so we get

> optimum health for a decent 2 to 2 1/2 weeks!!

from Dale,

Beth, my daughter continued to improve over a period of 1 1/2 to 2

years. She reached her top health and then stayed at that level for

years. Then, in college, she started Sub-Q and was amazed at how much

better she felt all the time -- instead of bouncing up and down on the

levels. So... Here's some things to check. #1 is she getting the

right dose -- does it need to be increased? #2 is it time to look at

Sub-Q? At 10 that would give her some control and input into doing her

own infusions and sets both of you free to schedule IgG whenever it is

most convenient for you (I don't mean to imply that you only infuse when

you feel like it -- but that you don't have to work around a nurse's

schedule. If you decide to infuse on Wednesday afternoons after school

-- then that's when you do it, plus or minus a few hours!). It's

turning out to be a very popular method of treatment.

But -- the first thing to check is her dosage. She may not be getting

enough to " hold " her for the entire time. And.... there is the

possibility that with each infusion it will hold a little bit longer.

Are you actually taking trough level measurements or are you just basing

it on the clinical picture? I hope your doctor has been checking

trough levels occasionally to see if she is keeping a therapeutic level.

Hope that helps,

In His service,

Dale