Re: re: fevers post infusion

[Guest guest]

Hi Ursula~~

Thank you for the information. I think that's what it was because she seems

to be fine today~~

Belinda

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

[Guest guest]

Hi Dale~~

Thank you for that information. I wasn't happy that they didn't have

Gammagard for Lacey, but they said they weren't able to get it. I'm not sure

exactly

how that is, but I will be checking into it before her next infusion~~

Belinda

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

Pittsburg, CA

CdLS OSG: Featured Family of August 2001

[Guest guest]

from Dale, Mom to Katy, CVID, age 19

Belinda and all, anytime you change 'brands " of IVIG, you need to go

back to beginning protocol because of the possibility for reactions.

When you start any product, you should go very slowly and increment up

slowly. But say, after several months you work up to a speed of 80

ml/hour and you change brands -- you MUST reduce that back to the lower

level or risk reactions. The body adjusts itself to the foreign

antibodies being given it so that gradually you can accept or tolerate a

greater speed -- but don't think that all IVIG is alike -- your body

knows it is not! There's different chemicals used in the rinse,

different pH, different stuff -- so maybe a slower infusion would have

helped, but I'm glad to see that she's doing fine today.

In His service,

Dale

Lacey449@... wrote:

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[Guest guest]

Hi Dale~~

Thank you again for all the information. I appreciate it so much and will

definitely talk to Lacey's doctor about Safety Net and not substituting~~

Belinda

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

Pittsburg, CA

CdLS OSG: Featured Family of August 2001

[Guest guest]

from Dale, Mom to Katy, CVID, age 19

For Belinda, and everyone else:

Make sure that your physician lists your child with the Safety Net

Program at IDF. This is a program that will guarantee that if there's

product available, our kids will get it first. This was a critical

program during the shortages 5-10 years ago. It's not good for our

kids to be bounced around on different products and if your physician

will call this number and register their patient, then if your pharmacy

can't supply the correct product, Safety Net can usually get it to you

within 3-5 days. That number is 1-800-296-4433. After your physician

registers you, you just tell your pharmacy that they MUST notify you or

the physician if they can't get the right product. (Some pharmacies

like to get you whatever is cheapest for them). Then you or your

physician can contact Safety Net and arrange for shipment. Sorry I

haven't told you about it before, I thought the shortages days were

over. You might need to just have your doctor tell the pharmacy -- no

substitutions!

In His service,

Dale

Lacey449@... wrote:

>Hi Dale~~

>

>Thank you for that information. I wasn't happy that they didn't have

>Gammagard for Lacey, but they said they weren't able to get it. I'm not sure

exactly

>how that is, but I will be checking into it before her next infusion~~

>

>

>Belinda

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

>Pittsburg, CA

>CdLS OSG: Featured Family of August 2001

>

>

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