Re: Very Important!!

[Guest guest]

,

Thank you for all this good input!!

Chad hasn't had the biopsy yet, but they are planning to do that.

And yes, I guess I do feel guilty in a way because I didn't know about this

article before now and I might could have prevented some of the reactions.

I just kept thinking that if I had been able to know of this in all the

former years, that we might could have stopped this from happening to Chad's

kidneys. I feel a lot better in knowing that this was linked to high doses

of IVIG. But because of dilution and infusion rates that have been done

with Chad at times, I think it might be the cause of the bad reactions.

From what I've understood from the article, all the products could cause

problems with him now(because he has this going on with his kidneys) if

they aren't infused and diluted at the minumum requirements.

Thank you for all this good input!! After what you and others have told me

about the high dosages, I feel much better. I'm just thinking that if I can

get them to keep a close eye on the products and dilutions of them, rate of

infusion, etc. that we can stop these reactions from happening and make sure

that they don't send Chad into shock or cause any further kidney damage than

what we've already got. The doctors are telling me that this thing with the

kidneys can't be reversed and can't be stopped from happening. All they can

do is monitor the situation and if it worsens, intevene to slow down the

process.

I'll let you know what I find out from all of them and I will definitely

bring this sugar issue up with them. Thanks again so much!

Re: Very Important!!

> crookfamily@... wrote:

> >

> > I made an earlier post " Interesting Kidney Info " . In case you

> > haven't seen it, an adult with PID told me that Sandoglobulin and

> > Panglobulin have been linked to kidney problems!! I went searching

> > on the net and found an article that I feel EVERYONE needs to see if

> > your child is receiving IVIG. To those of you whose children have

> > kidney problems, if your children have gotten or are getting IVIG, we

> > may have found our common factor!

> >

> > I'm crying my eyes out!! Chad has had almost all the products

> > mentioned in this article. I know I'll never be able to prove that

> > this is the culprit of his kidney problems, but I " feel it in my

> > bones " that it is.

>

> , I'm a lurker in the group, most of the time, but I sometimes pop

> in to share experience or medical knowledge when I think it might be

> helpful. You sound like you're feeling really guilty.... I think

> that's probably the role of mothers around the world, when their

> children develop a serious medical condition. So, to hopefully

> alleviate some of that guilt you're feeling, I just wanted to reassure

> you that the type of kidney failure they're discussing in the

> article/case reports is acute renal failure (complete shutdown of the

> kidneys, in a very short period of time -- days to hours, if not placed

> on dialysis), and that it's really not related to IgA nephropathy, in

> terms of how they present themselves clinically. The two problems are

> distinct in what the labs show about each, and what various scans and

> tests tell you about them. And any pathologist looking at slides of

> tissue from biopsy would be able to demontrate with a few key tests that

> they are different. I hope that you do bring up the topic with your

> doctor, though, especially in light of the fact that Chad already has a

> kidney problem.

>

> There were a few other factors (on top of pre-existing renal damage and

> high sugar load) that lead a number of people to ARF.... 1) patients

> were getting IVIG at a dose that was 2.5x the dose for a PID patient

> (most of these people in the article were getting high dose IVIG for

> autoimmune problems -- on the order of 1-2 grams). 2) the IVIG wasn't

> infused slowly enough, giving someone a whopping dose of sugar water,

> and creates great strain on the kidney to deal with that. Less sugar

> going into the body means less molecules that the kidney has to " strain "

> to remove it from the blood -- so the lower sugar versions are less

> stressful on the kidneys. And 3) most of the people who took IVIG and

> developed ARF were older -- kids are very resilient, but adults' bodies

> are less able to handle the sorts of problems and traumas. So kids

> would be expected to have a better outcome for that reason, as well.

>

> I can't remember if you've said this already, but has had a renal

> biopsy to rule in or rule out IgA nephropathy? If he's not had one but

> you're planning on one in the future, you can ask them to collect an

> extra small amount to look for evidence of the sugar-kidney failure

> connection, if it will put your fears to rest. My guess is that you're

> not going to find any damage, because when used at the correct dose

> (usually 400mg/body weight in kg ), correct infusion rate, and a

> non-sugary product, all of these will preserve kidney function. But a

> kidney biopsy would be able to identify whether or not what Chad has is

> an IgA-related process, or if it might be something else -- it's cool

> what those pathologists can do these days!

>

> As in any case, prevention's the best - you don't want damage to appear

> before bringing up the topic with your doctors.

>

> Hope that helps a little -- I am exhausted, so I hope this isn't an

> advertisement for both spellcheck and grammarcheck on my email program!

:-)

>

> Take care,

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>