Why IVIG: Darla

[Guest guest]

Darla:My boys get IVIG for the following reasons:B cell immune deficiencyAutoimmune disease (severe neuropathy, vasculitis, idiopathic thrombocytopenia, etc.)) It is worth the risk and monthly admissions in the boys case because it keeps them infection free (aside from blood infections although they rarely have those even), it stabilizes Sam's platelets...if we wait too long for an infusion he just destroys all his platelets and the donor platelets we give him, it decreases their neuropathy and stabilizes the vasculitis process that Sam has. It is not a cure but seems to b a good treatment for the boys and I believe it helps keep them at a functional level that they would not have without it. It is very very expensive so most insurance companies will not approve without objective evidence that it is needed. There is also a shortage so doctors are careful who they Rx it for. The side effects can be severe and in some cases not worth it. In the boys case, we worked hard with our doctors and nurses to find a way to give it that would minimize the side effects. Hope that helps.Annewww.caringbridge.org/wi/zachsam

[Guest guest]

Darla,

has been diagnosed with hypogammaglobulinemia (as have I)

and has been placed on IVIG for treatment of this. Since she also

has the severe neutropenia due to her bone marrow faiulure this

places her twice compromised to infections so we decided to try the

IVIG treatment. It is risky and expensive. Every treatment isn't for

everyone and you need to have a diagnsoses to warrent the use of

IVIG to have a doctor prescribe it let alone the insurance pay for

it. For it has been very successful and she has had little

side effects from the infusions. We are very agreesive with pre and

post medications an she is automatically placed on D10 and phenergan

at home for 24 hours post (and NPO) to avoid vomiting. Hope this

answers some of your questions.

Dawn