Re: New to the group - Son has IgAN

[Guest guest]

Thank you for your response.

My son recently had a flare-up, after an upper respiratory infection. He did

not tell me about it, his brother did.

He did see a doctor at that time. I hope he continues to monitor his own

health.

I remember being 18 - I was never going to get old, gray, fat, or die.

How about you?

Michele

[Guest guest]

Hi MIchele

Being a parent of a teenager myself who has recently moved out to attend

university, I understand completely how you feel.

Unfortunately, there is little you can do to force him to take his IgAN

seriously. His newfound independence is probably too exciting to pay

attention to his health.

But to encourage you, IgAN is almost always a very slowly progressing

disease, so I doubt he can do any real hard in ignoring it for a time. More

likely, he will have his own body tell him he can't keep up, and it will

happen all on his own with or without you encouraging him to slow down.

Since fatigue is fairly common with IgAN, your son will probably have to slow

down after a short while of enjoying his new independence.

[Guest guest]

,

That is great advise you wrote for Michele. I am sure it is all the more

meaningful since you are about the same age as Michele's son. Thanks for

writing from your perspective.

[Guest guest]

Hi. My son is 9. He was diagnosed via kidney biopsy when he was 7.

Although, he is still at home we have tried to learn as much as we can about

this diease and pass it along to him. There are some good web sites out

there that you could print up and give to him to read. I know how

frustrasting it must be seeing him act as though " nothing could happen to

me " .

This group has taught me so much that I am sure you will get great

responses.

>

>Reply-To: iga-nephropathy

>To: iga-nephropathy

>Subject: New to the group - Son has IgAN

>Date: Fri, 25 Oct 2002 15:58:37 -0000

>

>My son, who is now 18 years old, was diagnosed with IgAN at age 10 by

>a pediatric nephrologist through a kidney biopsy.

>

>He is no longer living at home, and I want to impress upon him how

>serious this condition is. He is acting like an ostrich " head in the

>sand " , no problem, typical teenager. Thinks he is immortal.

>

>If anyone can help me to provide him with the insight to take care of

>himself and the importance of not ignoring this disease, please

>respond.

>

>Thank you so much.

>

>Michele

>

>

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[Guest guest]

Welcome to the group Michele.

My 18 year old son doesn't have IgAN (so far, I'm the only patient), but, I

can sure understand how it is! Mine has left home recently too, at the same

time I was moving into end-stage and dialysis. No, the guilt treatment

didn't work : )

We've had a few mothers with the same problem in the group with exactly the

same problem. What can you do when they won't listen. I guess the only thing

you can do is hope that, if the disease is mild anyway, it may stay that way

for a while, and no harm done, despite the person not paying much attention

to it.

I pretty much ignored it myself when I was in my 20's and 30's, until it

eventually found a way to catch my attention. That's the price you pay for

being a male, I think.

Does he have " flare ups " , with visible blood and more protein in his urine?

I don't know your son's case enough to comment, but, they can be pretty

resilient at that age, you know. If he does get sick, that may be enough to

get his attention, without there being much permanent loss of kidney

function.

Not much else you can do about it, except keep reminding whenever you can

about not drinking too much, not doing drugs, eating right, exercising, and

going for regular check-ups (at least at a family doctor). Where I live, an

18 year old is considered an adult, and, if they are the more adventurous

type, they just have to find things out on their own.

Good luck. I wish I could be more helpful. Maybe some actual mothers of

son's with IgAN will have better ideas for you.

Pierre

New to the group - Son has IgAN

> My son, who is now 18 years old, was diagnosed with IgAN at age 10 by

> a pediatric nephrologist through a kidney biopsy.

>

> He is no longer living at home, and I want to impress upon him how

> serious this condition is. He is acting like an ostrich " head in the

> sand " , no problem, typical teenager. Thinks he is immortal.

>

> If anyone can help me to provide him with the insight to take care of

> himself and the importance of not ignoring this disease, please

> respond.

>

> Thank you so much.

>

> Michele

>

>

[Guest guest]

QUOTE

I remember being 18 - I was never going to get old, gray, fat, or die.

>

> How about you?

UNQUOTE

Well Michele,

LOL. I may be on dialysis now, but I'm not fat or dead yet. And as far as

old goes, I guess I'm old enough to have gray hair, but what hair I do have

is still very black : )

I would say it's a pretty good sign that your son did see a doctor on his

own when he had the flare-up. It sounds like he may be concerned enough on

his own. A person should be concerned enough to do the right things most of

the time, but not so concerned as to be thinking " disease " all the time.

And, you know, most of those flare ups aren't really as harmful as they

look.

Still, I know it's hard not to worry about them.

Pierre

Re: New to the group - Son has IgAN

> Thank you for your response.

>

> My son recently had a flare-up, after an upper respiratory infection. He

did

> not tell me about it, his brother did.

>

> He did see a doctor at that time. I hope he continues to monitor his own

> health.

>

> I remember being 18 - I was never going to get old, gray, fat, or die.

>

> How about you?

>

> Michele

>

>

[Guest guest]

,

I'm 22,male, IGA, ESRD, and all. As someone who has a similiar

situation to your son, let me say that even though I might eat some

things I'm not supposed to and occasionally forget a pill or two, I

still very actively think about my health. Now I am a lot further

along than your son, and that makes me think about it more, but I bet

he does too. My parent try to hassle me about things related to my

health and I believe it's really counteractive. I would rather feel

independent and prove to myself that I can take care of me than have

my parents do it for me. So my take on this is to see how he does on

his own, casually remind him of things, gently bring it up, but don't

be forceful, that can do more harm than good. As for what you can do

to remind him, tell him stories of some of us you have met here, let

him know that with the proper treatments and following doctors orders

you are much more likely to not have to go to extreme dietary and

life (ie Dialysis) restrictions. Try and make him see the big

picture, that's worked with me so far. Good Luck

> My son, who is now 18 years old, was diagnosed with IgAN at age 10

by

> a pediatric nephrologist through a kidney biopsy.

>

> He is no longer living at home, and I want to impress upon him how

> serious this condition is. He is acting like an ostrich " head in

the

> sand " , no problem, typical teenager. Thinks he is immortal.

>

> If anyone can help me to provide him with the insight to take care

of

> himself and the importance of not ignoring this disease, please

> respond.

>

> Thank you so much.

>

> Michele

[Guest guest]

, my son is also 18, diagnosed at 16. He is exactly the

same way. He is a senior in high school, but as far as he is

concerned, he is invincible. His head is in the sand. I worry about

next year when he is away at college. I guess he will have to learn

the hard way to take care of his health. Good luck to you. Pam

> My son, who is now 18 years old, was diagnosed with IgAN at age 10

by

> a pediatric nephrologist through a kidney biopsy.

>

> He is no longer living at home, and I want to impress upon him how

> serious this condition is. He is acting like an ostrich " head in

the

> sand " , no problem, typical teenager. Thinks he is immortal.

>

> If anyone can help me to provide him with the insight to take care

of

> himself and the importance of not ignoring this disease, please

> respond.

>

> Thank you so much.

>

> Michele

[Guest guest]

Pierre when you say flare up what do you mean. Does your counts go up, or

does it mean getting a respitory illness. Torrey

[Guest guest]

This is a non-medical term that people use, usually to mean that they have

an episode of visible blood in the urine (often when there is an upper

respiratory or other infection). Sometimes, protein in the urine is higher

too. But, generally, it doesn't actually affect kidney function numbers (of

course, there are always exceptional cases).

Not everybody gets these. It seems more common the younger the patient.

Pierre

Re: New to the group - Son has IgAN

> Pierre when you say flare up what do you mean. Does your counts go up, or

> does it mean getting a respitory illness. Torrey

>