Re: New member, need to put IGAN on hold

[Guest guest]

CAROLYN,,,,I know what you mean,,,not wanting to think of your baby having

this disease,,,,my daughter which just turned 10 today has this horriable

disease,,,and it scares me to death,,,you never know what to think next,,she

has been in the hospital 5 times since dec of 2002,,one time,,,,she had me

really scared,,,,her creatinine level went really high,,,,and blo0od pressure

was real low,,,just wanted to let you know,,,,i want request a biopsy even

thou the dr dont want to do one at this time,,,,it would be for the best for

your son,,,,,,,crystal

[Guest guest]

Carolyn,

I think part of your message was deleted. I got nothing after the Dr. could not

pin anything down.

New member, need to put IGAN on hold

Hello,

I am Carolyn, mother of 17yo who is believed to have IGAN. I signed on

to your group last summer after our nephrologist concluded that had IGAN.

I all of your help and support to each other but the mail has been over whelming

and I need to sign off for now as unfortunately I just am not able to afford the

time right now but before I exit wanted to send my first e-mail and ask for any

suggestions you may all have. In order for your help I will have to (bore) tell

you my story, of which is a little foggy as there have been many high emotions

flying and denial which probably still remains. But I have put all my trust

into Dr. Beck and her staff at St. Louis Children's Hospital in Missouri. June

6, 2002 I took Josh to his pediatrician for c/o of severe abdominal pain and for

the 2nd or 3rd day. Now Josh is my middle child and he never c/o anything- so

when he said I have to go to the Dr. I knew there was trouble. At the office we

could not pin point he problem b Carolyn

[Guest guest]

Hi Carolyn,

I am sorry about being diagnosed with IgAN. I can only imagine as a

Mom how difficult it has to be to see your child go through that.

To hopefully encourage you, I was first symptomatic a bit younger than

, and now I am in my 40's and really only have struggled with IgAN the

past few years. I am still holding out on dialysis or transplant!

needs to listen to his body in terms of his limitations from fatigue, but

should be encouraged to live his life to the fullest. It is very common with

IgAN that any illness, bacterial or viral, seems to set off the IgAN and many

members to get the macrohematuria during these episodes. I myself used to

get them as a teenage, but have only had microscopic hematuria for the past

17 or so years.

I don't know if his doctor has him on an Ace inhibitor or not, but they are

known to have a renal protective nature. It is worth discussing with his

Nephrologist. Other than that, it is important to check his BP and

creatinine levels on a regular basis to monitor him.

Good luck with your son, and I wish you both all the best. Please feel free

to pop in from time to time when you have questions or need additional

support! We are always here!

[Guest guest]

I second what said. And, if you want to be able to check into messages

once in a while, I would suggest just changing your settings to " No email "

instead of unsubscribing. That way, you can have a look anytime you feel the

need to, just by going to the Yahoo group site:

http://groups.yahoo.com/group/iga-nephropathy/

Good luck.

Pierre

Re: New member, need to put IGAN on hold

> Hi Carolyn,

>

> I am sorry about being diagnosed with IgAN. I can only imagine as

a

> Mom how difficult it has to be to see your child go through that.

>

> To hopefully encourage you, I was first symptomatic a bit younger than

> , and now I am in my 40's and really only have struggled with IgAN

the

> past few years. I am still holding out on dialysis or transplant!

> needs to listen to his body in terms of his limitations from fatigue, but

> should be encouraged to live his life to the fullest. It is very common

with

> IgAN that any illness, bacterial or viral, seems to set off the IgAN and

many

> members to get the macrohematuria during these episodes. I myself used to

> get them as a teenage, but have only had microscopic hematuria for the

past

> 17 or so years.

>

> I don't know if his doctor has him on an Ace inhibitor or not, but they

are

> known to have a renal protective nature. It is worth discussing with his

> Nephrologist. Other than that, it is important to check his BP and

> creatinine levels on a regular basis to monitor him.

>

> Good luck with your son, and I wish you both all the best. Please feel

free

> to pop in from time to time when you have questions or need additional

> support! We are always here!

>

>

>

>

>

[Guest guest]

And can I jump on the bandwagon and third it! Please do take care

of you and , and you know where we are when you need us again.

Take care and best wishes

> I second what said. And, if you want to be able to check

into messages

> once in a while, I would suggest just changing your settings

to " No email "

> instead of unsubscribing. That way, you can have a look anytime

you feel the

> need to, just by going to the Yahoo group site:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> Good luck.

>

> Pierre

>

> Re: New member, need to put IGAN on hold

>

>

> > Hi Carolyn,

> >

> > I am sorry about being diagnosed with IgAN. I can only

imagine as

> a

> > Mom how difficult it has to be to see your child go through that.

> >

> > To hopefully encourage you, I was first symptomatic a bit

younger than

> > , and now I am in my 40's and really only have struggled

with IgAN

> the

> > past few years. I am still holding out on dialysis or

transplant!

> > needs to listen to his body in terms of his limitations from

fatigue, but

> > should be encouraged to live his life to the fullest. It is

very common

> with

> > IgAN that any illness, bacterial or viral, seems to set off the

IgAN and

> many

> > members to get the macrohematuria during these episodes. I

myself used to

> > get them as a teenage, but have only had microscopic hematuria

for the

> past

> > 17 or so years.

> >

> > I don't know if his doctor has him on an Ace inhibitor or not,

but they

> are

> > known to have a renal protective nature. It is worth discussing

with his

> > Nephrologist. Other than that, it is important to check his BP

and

> > creatinine levels on a regular basis to monitor him.

> >

> > Good luck with your son, and I wish you both all the best.

Please feel

> free

> > to pop in from time to time when you have questions or need

additional

> > support! We are always here!

> >

> >

> >

> >

> >

[Guest guest]

Pierre, , Crystal and especially ,

Thank you so very much for your reply. May God Bless you all as I read

everyone else's stories, I am so glad they have people as wonderful as you

to take the time to share with them. I plan to take Pierre's advice and

change my setting to no email for now. I will be praying for all of you.

Carolyn (mother of )

Re: New member, need to put IGAN on hold

>

>

> > Hi Carolyn,

> >

> > I am sorry about being diagnosed with IgAN. I can only imagine

as

> a

> > Mom how difficult it has to be to see your child go through that.

> >

> > To hopefully encourage you, I was first symptomatic a bit younger than

> > , and now I am in my 40's and really only have struggled with IgAN

> the

> > past few years. I am still holding out on dialysis or transplant!

> > needs to listen to his body in terms of his limitations from fatigue,

but

> > should be encouraged to live his life to the fullest. It is very common

> with

> > IgAN that any illness, bacterial or viral, seems to set off the IgAN and

> many

> > members to get the macrohematuria during these episodes. I myself used

to

> > get them as a teenage, but have only had microscopic hematuria for the

> past

> > 17 or so years.

> >

> > I don't know if his doctor has him on an Ace inhibitor or not, but they

> are

> > known to have a renal protective nature. It is worth discussing with

his

> > Nephrologist. Other than that, it is important to check his BP and

> > creatinine levels on a regular basis to monitor him.

> >

> > Good luck with your son, and I wish you both all the best. Please feel

> free

> > to pop in from time to time when you have questions or need additional

> > support! We are always here!

> >

> >

> >

> >

> >

[Guest guest]

oops I meant but I truly appreciate all your input

Re: New member, need to put IGAN on hold

> >

> >

> > > Hi Carolyn,

> > >

> > > I am sorry about being diagnosed with IgAN. I can only imagine

> as

> > a

> > > Mom how difficult it has to be to see your child go through that.

> > >

> > > To hopefully encourage you, I was first symptomatic a bit younger than

> > > , and now I am in my 40's and really only have struggled with

IgAN

> > the

> > > past few years. I am still holding out on dialysis or transplant!

>

> > > needs to listen to his body in terms of his limitations from fatigue,

> but

> > > should be encouraged to live his life to the fullest. It is very

common

> > with

> > > IgAN that any illness, bacterial or viral, seems to set off the IgAN

and

> > many

> > > members to get the macrohematuria during these episodes. I myself

used

> to

> > > get them as a teenage, but have only had microscopic hematuria for the

> > past

> > > 17 or so years.

> > >

> > > I don't know if his doctor has him on an Ace inhibitor or not, but

they

> > are

> > > known to have a renal protective nature. It is worth discussing with

> his

> > > Nephrologist. Other than that, it is important to check his BP and

> > > creatinine levels on a regular basis to monitor him.

> > >

> > > Good luck with your son, and I wish you both all the best. Please

feel

> > free

> > > to pop in from time to time when you have questions or need additional

> > > support! We are always here!

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I especially want to thank you for you input I'm sure you will be

hearing from me soon GOD BLESS YOU

Carolyn

Re: New member, need to put IGAN on hold

> Hi Carolyn,

>

> I am sorry about being diagnosed with IgAN. I can only imagine as

a

> Mom how difficult it has to be to see your child go through that.

>

> To hopefully encourage you, I was first symptomatic a bit younger than

> , and now I am in my 40's and really only have struggled with IgAN

the

> past few years. I am still holding out on dialysis or transplant!

> needs to listen to his body in terms of his limitations from fatigue, but

> should be encouraged to live his life to the fullest. It is very common

with

> IgAN that any illness, bacterial or viral, seems to set off the IgAN and

many

> members to get the macrohematuria during these episodes. I myself used to

> get them as a teenage, but have only had microscopic hematuria for the

past

> 17 or so years.

>

> I don't know if his doctor has him on an Ace inhibitor or not, but they

are

> known to have a renal protective nature. It is worth discussing with his

> Nephrologist. Other than that, it is important to check his BP and

> creatinine levels on a regular basis to monitor him.

>

> Good luck with your son, and I wish you both all the best. Please feel

free

> to pop in from time to time when you have questions or need additional

> support! We are always here!

>

>

>

>

>