Re: New to group, but not IgA

[Guest guest]

Hello,

My name is , I joined this group because I have a 12 year old daughter

with aquired IgA nephropathy.

She has had it since the age of 4 after having Henoch Schonlein Purpura.

She has microscopic hematuria, intermittent flank pain and sometimes fatigue.

As expected, it flairs up whenever she gets sick.

She just had labs drawn which were all within normal limits.

I have taken her to a pediatric nephrologist who basically blew us off. His

only advice was that she should avoid ibuprofen and supplemental vitamin C as

those are hard on the kidneys.

The way I stumbled upon this group was because I am an RN who is in the

process of changing specialties from Labor and Delivery to Renal Dialysis

nursing!

From what I know of IgA nephropathy, you can have it and it never really

progresses or you can have it and it can rapidly progress, or it can slowly

progress over the course of 10 - 25 years.

I am assuming that my daughter has either the slowly progressing variety or

the never progressing variety since she has been very stable over the past 8

years.

I do worry about her though! She has never had a renal biopsy. No one has

ever mentioned it to me, they just said that it was definitely IgA because it

started during the HSP and it is a known causative factor for IgAN.

I guess that is it for now. I am finding all of the messages very

interesting.

[Guest guest]

Hi ,

Welcome to the group. I am very sorry to hear that your daughter has been

diagnosed with IgAN and HSP. I am also one who has been diagnosed with both,

and I have had a strong run since the 70's having only really struggled the

last couple of years. Like Pierre, I hope your daughter goes into remission

as many children diagnosed do, or at least that she will have many many years

of stability.

Your medical background will prove invaluable to caring for your daughter, I

am sure.

[Guest guest]

Welcome to the group .

Let's hope your daughter's kidneys stay stable for a long, long time. There

really isn't much data available about how children with IgAN fare later on

in life, but they are among the group where remission is thought to be most

likely. From the sounds of it, there may not be a need for a biopsy.

You must be a pretty good nurse, because from what I've seen at my dialysis

centre, they are a class above!

Pierre

Moderator

Re: New to group, but not IgA

> Hello,

>

> My name is , I joined this group because I have a 12 year old

daughter

> with aquired IgA nephropathy.

>

> She has had it since the age of 4 after having Henoch Schonlein Purpura.

>

> She has microscopic hematuria, intermittent flank pain and sometimes

fatigue.

> As expected, it flairs up whenever she gets sick.

>

> She just had labs drawn which were all within normal limits.

>

> I have taken her to a pediatric nephrologist who basically blew us off.

His

> only advice was that she should avoid ibuprofen and supplemental vitamin C

as

> those are hard on the kidneys.

>

> The way I stumbled upon this group was because I am an RN who is in the

> process of changing specialties from Labor and Delivery to Renal Dialysis

> nursing!

>

> From what I know of IgA nephropathy, you can have it and it never really

> progresses or you can have it and it can rapidly progress, or it can

slowly

> progress over the course of 10 - 25 years.

>

> I am assuming that my daughter has either the slowly progressing variety

or

> the never progressing variety since she has been very stable over the past

8

> years.

>

> I do worry about her though! She has never had a renal biopsy. No one

has

> ever mentioned it to me, they just said that it was definitely IgA because

it

> started during the HSP and it is a known causative factor for IgAN.

>

> I guess that is it for now. I am finding all of the messages very

> interesting.

>

>

>

>

>