Happy Saturday

[Guest guest]

Good morning folks.

glad to hear from you again. I'm so gad you've found a new

protocol for 's infusions. I hope the weekend stays calm and

reaction-free. Which steroid did you switch to? Do you know if the doctors

have tested him for Helicobacter pylori? It's a stomach bacteria that can

cause muscle spasms, blood in the stools and sometimes weight loss. Just a

thought. The blood test isn't accurate because of the donor antibodies but

there is a breath test where he blows into a balloon and they test that.

Another thing that comes to mind is bacterial overgrowth. Macey had that

last year and that was also a breath test. It happens when frequent

antibiotics interfere with the normal good bacteria in the stomach and cause

it to succumb to the bad bacteria. Macey's GI doc said it's frequent in PID

patients.

Belinda - Macey's SED rate was checked this infusion also. It's supposed to

be checked every 3 months but it had been dropped for a while. It shows the

inflammation in the body. Her level was 8 which is good. Anything under 20

is good. Unless it's under 20 but has been climbing. What was the result?

In Macey's case doctors use it to keep an eye on autoimmune diseases

developing or joint/muscle inflammation.

We were told that it takes 6 continuous months on a weight appropriate dose

before any results can be seen. Here was our situation. Macey started IVIG

in January 97, at 5 gms. which was considerably underdosed for her weight

(pulmo ordered it). Then after 6 months and no improvement we started with

a ped immunologist who doubled her dose to 10 gms. After only 3 months

there were problems getting the IVIG so we decided it was time to do the

pneumovax. So in December 97 she started back on IVIG but this time every 3

weeks at 10 gms. So as of June she will have been on it continuously for 6

months at the correct dose. Maybe we'll see something then. Hard to

believe after all this time we are just now getting to the 6 month level.

Think about this. You're child's on IVIG September - May (8 months). About

March you finally have the therapy working and in May it's time to stop.

Well you start back in September but guess what, it's going to take you

until March again before you see the benefits because you're going to have

to rebuild all you lost in the summer. So really each year you're only

getting 2 good months out of this medicine. Is that worth the side effects

and risks that come with this drug? Why stop each year during the summer if

it's going to take you until the early spring before you see benefits.

It's like the other day when we told our ped that we had stopped Macey's

Intal neb treatments because it was summer. As she reminded us, it takes up

to 6 weeks before the Intal is sufficiently in your system again to provide

the calming affect it does to the bronchial tubes. Same thing with IVIG.

Unless you're giving the massive doses like the do with ITP then you're

going to have some down time before you can see the rewards. IVIG (unless

you're talking the big loading doses) is not a rescue drug.

Anyway that's my .02, and it may be warped.

Ursula Holleman

Macey's mom (3 yr. old with CVID, asthma, GERD, sinus disease, grade I left

kidney reflux, Sensory Integration Disorder)

ICQ # 28592349

http://www.icq.com

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