Missy

[Guest guest]

Missy has he had an ultrasound of his kidney's and bladder? Have they looked

for kidney reflux?

ALso how often are you doing the antegrade enemas? Our daughter had a Chait

cecostomy when she was younger but her stoma kept getting infected. It lasted

about two years and then had to be taken out. She does NG cleanouts now when

she has to. Miralax has been a big help.

Ursula

Mom to (17) and Macey (14)

Macey's Caringbridge site

Macey's Blog

________________________________

From: <fancyflowers@...>

Sent: Sun, April 18, 2010 1:29:29 PM

Subject: RE: New Here-

,

I forgot to ask you about the Igs being lost through the bowel. Do you have

any links or anything that talks about this? I have not found anything

online. My son has many bowel issues to begin. He was born with an

imperforate anus (no anus what-so-ever) , had a colostomy for quite a while,

had a PSARP (surgery to create and repair the anus/rectum) , a Ladds

procedure for malrotation, and most recently a cecostomy for daily flushes

through his belly instead of rectal enemas.

I tell you all this, because besides having the Ig issues, a bigger concern

for us at the moment is possible CF and pancreatic insufficiency. His sweat

test was scheduled for last Monday, but had to be rescheduled due to another

UTI and high fever. Normally, a child with my son's issues would have a

very good prognosis and not be having the problems that he has with his

bowels. From a GI perspective he has all the tell tale signs of CF, but all

of his blood work has been negatives, hence the pancreatic insufficiency

testing. He also has delayed gastric emptying and mal-absorption issues.

I would love more information on how the bowel dumps the Igs, since my son

has so many bowel issues.

Missy

Mommy to , my 2 year old Monster with VACTERLS

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Madden

Sent: Sunday, April 18, 2010 12:05 PM

groups (DOT) com

Subject: Re: New Here

____________ _________ _________ __

Welcome!

So here are my questions:

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

Through the bowel if I'm not mistaken.

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.

Pretty much everyone's child on this list gets IG therapy, at least all the

more active list members. The IgA def issue isn't much of an issue, just

need to pick a low IgA IG product.

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

For us they were horrible but still better then the nightmare we had been

living, no more life threatening infections. We switched to weekly sub-q

infusions as soon as possible which was around a year of IV. Would have done

it sooner but no SCIG training was available in our area.

Has anyone gotten infections from the donor plasma?

Not that I am aware of but it is a blood product and its possible for a new

infection to slip in the to the supply but believe me, they react fast as

soon as they realize a problem.

Has anyone donated their own plasma for their kids infusions?

You can't, you can donate if you qualify to the general donor pool but it

takes around 50,000 donors to make a dose of IG and it takes around 1 year

to process it. IG Living mag did an article on it last year on how IG

products are made, you can probably find it in the back issues online

archive www.igliving. com.

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

Usually, some kids outgrow it around puberty but its rare.

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

Yes! It may take 6 months or so to really see the effect but we started

seeing it help pretty fast but considering the amount of infections we were

dealing with even 1-2 less a month was noticeable.