Re: FW: When You're told Your Child Doesn't or has Never ha

[Guest guest]

Funny, our ID is talking about taking Ashton off her IVIG again in the

summer of 2009 to see if she has out grown CVID. They did this last

year, and she bottomed out after 3 months. She looks so healthy and

strong right now. Her sister is still having bouts with mycoplasma, and

they think she has a PIDD that won't be helped by IVIG.

I agree that causing damage to vital organs, in a wait and see

situation, is crazy. I was under the impression that very few children

out grow PIDDs.

I know that IVIG is being used for more and more medical problems. I

also know that there have been some supply issues. The reimbursement

issues are always there.......

Is there something that has been discovered recently to change the

thinking? I haven't heard of new research results...

I truly hope things turn out ok for the boys, and everyone else going

through this.

L

mom to Ashton 15, CVID, Asthma, & Dyslexia & Marina 12 Asthma &

something unknown

[Guest guest]

that is exactly what I am saying . What is going on??? has there been a

conference? or are the insurance companies putting pressure on these guys???

BARBIE

Re: FW: When You're told Your Child Doesn't or has Never ha

Funny, our ID is talking about taking Ashton off her IVIG again in the

summer of 2009 to see if she has out grown CVID. They did this last

year, and she bottomed out after 3 months. She looks so healthy and

strong right now. Her sister is still having bouts with mycoplasma, and

they think she has a PIDD that won't be helped by IVIG.

I agree that causing damage to vital organs, in a wait and see

situation, is crazy. I was under the impression that very few children

out grow PIDDs.

I know that IVIG is being used for more and more medical problems. I

also know that there have been some supply issues. The reimbursement

issues are always there.......

Is there something that has been discovered recently to change the

thinking? I haven't heard of new research results...

I truly hope things turn out ok for the boys, and everyone else going

through this.

L

mom to Ashton 15, CVID, Asthma, & Dyslexia & Marina 12 Asthma &

something unknown

[Guest guest]

or are the insurance companies putting pressure on these guys???

I think you hit the nail on the head!

Janet

mom to Brittany, age 17, CVID, Uriticaria & Angioedema, Vitamin D def,

Secondary Parathyroidizm

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)