Thanks and More Questions

[Guest guest]

from Dale, Mom to Katy, CVID, age 18

We did not have to continue on prophylactic antibiotics and found that

when we had to use an antibiotic it actually worked! But, sometimes if

the sinuses are a major problem or if the damage is extensive -- some

doctors continue with prophylactic antibiotics to control the sinuses.

There's no reason you can't use both for a while and then trial off at

a time when your son seems healthy enough. It's true that IVIG should

make it not necessary to be on antibiotic to prevent most infections --

but sinuses are one area that is often affected more by IgA than by IgG

-- so replacing the IgG doesn't cure it. But, it should improve it

some. How much is anybody's guess. Also, if there have been a lot of

sinus infections in the past, then there's damage that isn't going to

disappear over night. But, possibly after long-time use, you could see

continued improvement. Katy quit having sinus infections -- but move to

chronic sinusitis -- just lots of snot and congestion - but not a

full-blown infection. If she would use sinus rinses she could probably

improve the stuffiness - but would rather live with it than rinse. Ahhh

the joys of parenting an adult child! Now, she has about 1 sinus

infection a year that we end up having to treat with antibiotics. But,

it's no biggie. Boy, what a difference that makes!

Hope that helps,

In His service,

Dale

rhmtce wrote:

>Thank you to all who answered my post re " starting IVIG " . I have been

>a member on this site for a couple of months as my son's immune issues

>have been investigated and while I have mainly been a lurker I must

>say you are an incredible group of parents. I have already learned

>alot and truely appreciate your support as we try this new approach.

>Another question though- my son has been on prophylactic antibiotics

>for about 4 months. We have seen an improvement in his overall health-

>he is actually breathing through his nose again as his sinus issues

>have improved alot. If we stop the antibiotics things get pretty rocky

>very quickly. Do people continue on the antibiotics once on IVIG ? If

>an infection occurs do you treat it and if so how quickly? Can you

>continue prophylactic antibiotics while on IVIG?

>Again thanks for all your input.

>FAye

>

>

>

>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

>

>To unsubscribe -unsubscribegroups (DOT)

>To search group archives go to: /messages

>

>

[Guest guest]

Hi Faye~~

My daughter Lacey has been on IVIG since November. She has had no pneumonias

or even any significant lung problems since then, but she has still had a lot

of sinus and ear problems. We have an infectious disease doctor who doesn't

believe in using antibiotics unless absolutely necessary. He's worried that she

will get a resistant bug and end up with a super infection. It's been

frustrating at times, especially when she goes off the antibiotics, as you say.

She

invariably ends up sick and has to go back on them. After 3 sinus surgeries, she

is doing better in that department. Now we're trying to get her ears squared

away. She'll have surgery soon to clean them out and replace the tubes. It

sure seems a lot easier just to keep her on an antibiotic, but I know that can

cause future problems. Anyway.....the main concern with her is her lungs since

she has chronic lung disease, and they've been doing GREAT since IVIG!! I hope

you get everything worked out soon~~

Belinda

Lacey's mom, (15, CdLS, IgG deficient, IVIG)

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

[Guest guest]

;

You asked:

" 3)     I read of some folks adding herb teas for other flavors,

like peppermint and yerba mate. When are those teas added? "

Actually I think you should hold off on this one for a little bit.

Mainly because if you plan to brew with anything other than tea,

meaning Camellia sinensis, then you need to have extra cultures and

backup cultures that you keep separate to maintain the purity of the

original strain.

Altho, you can add flavors at bottling time after you have made the

batch. You can put slices of fresh ginger root, fresh or frozen sliced

strawberries, fresh or frozen raspberries, blueberries, peaches apricot

you get the picture, Right? Let it sit a day or two or so and be pleased

with the different flavors.

Luv, Sprite

" When you drink the water, remember the spring. "

 Chinese proverb

Check out my Kombucha Information page, it has links to all kinds of KT

info and more:

<A HREF= " http://www.geocities.com/ladyfangs.geo/Page5.html " >Sprite's

Kombucha Page</A>

[Guest guest]

,

You asked:

" 4)     Do I need a bigger SCOBY if I want to brew a 5 gallon

bucket? Or will my smaller one grow a baby to the size of the surface

area of the container I use?

IMHO no, I don't believe you need a bigger SCOBY, but do believe you

will need a lot more starter KT. I have never done a 5 gallon batch, but

I know there are list members that have alot more experience in large

scale brewing that I am sure will gladly help you out with the details.

Luv, Sprite

" When you drink the water, remember the spring. "

 Chinese proverb

Check out my Kombucha Information page, it has links to all kinds of KT

info and more:

<A HREF= " http://www.geocities.com/ladyfangs.geo/Page5.html " >Sprite's

Kombucha Page</A>