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[Guest guest]

Hi! I wanted to introduce myself and my son.

I'm , wife to and mommy to . was born March 2008

with VACTERL Association. He has had 7 major surgeries (spinal cord, heart,

multiple bowel surgeries, index pollicization).

We found that has IGA was low/deficient when he has being tested for Celiac

Disease. We then found out he had very low levels of IGG when we were

testing him for a latex allergy.

He has a probable diagnosis of CVID. We are waiting for more tests to

determine if he is dumping the Igs somehow or if his body is just making

enough (more likely the cause). If his body is not making enough they are

planning to start IGIV therapy.

So here are my questions:

How does one lose Igs is their body is making enough?

Does anyone have low IGG and IGA and get infusion therapy? What precautions

have been taken to guard against an allergic reaction to the IGA plasma? We

were told when we first found out about the low IGA that if he needed a

transfusion during one of his surgeries that he could have anaphylaxis from

the IGA in the donor blood.

What side effects have your kids had from the IGIV therapy?

Has anyone gotten infections from the donor plasma?

Has anyone donated their own plasma for their kids infusions?

If your kid has CVID, does your child need infusions for life?

Has their rate of infection gone down once starting the therapy?

I was told that my son now has a 50 fold chance of getting leukemia or

malignancy. Does this decrease when they start therapy?

My son also has kidney issues, including kidney damage. Will the infusion

therapy make this worse?

The weird thing about all of this is he's never been sick. He has chronic

UTIs and he's on prophylaxis antibiotics, but he has a neurogenic bladder.

Missy

Mommy to , my 2 year old Monster with VACTERLS