Re: My 12 year old daughter

[Guest guest]

I am sorry your daughter has been diagnosed with IgAN. I have had symptoms

of IgAN since I was a teenager myself, although not officially diagnosed until

I had my biopsy in 1987. Although I am very thin and eat a very healthy diet,

at 17 my cholesterol was 345 and was due to spilling so much protein. I do

take cholesterol meds (Zocor) and now my total cholesterol is 182 at the last

test.

I am sure as a mother is must be so hard to have your daughter diagnosed at

such a young age. There are a number of mothers with children on this board,

as well as on www.igan.ca so you are in good company.

Welcome to the group.

In a message dated 7/19/2004 8:37:52 AM Pacific Daylight Time,

waterskiier77@... writes:

> My 12 year old daughter was diagnosed with IgA following a kidney

> biopsy in December 2002. She took an ACE for about a year and is

> currently taking an ARB to keep her protein/creatinine ratio low. She

> also takes fish oil. We found out on Friday that her total

> cholesterol is 247. I am looking for information about the

> relationship between cholesterol and IgA. Also, I am looking for

> other parents of children with IgA. We don't know anyone else with

> the disease or anyone else that has even heard of the disease before.

>

>

[Guest guest]

I am sorry your daughter has been diagnosed with IgAN. I have had symptoms

of IgAN since I was a teenager myself, although not officially diagnosed until

I had my biopsy in 1987. Although I am very thin and eat a very healthy diet,

at 17 my cholesterol was 345 and was due to spilling so much protein. I do

take cholesterol meds (Zocor) and now my total cholesterol is 182 at the last

test.

I am sure as a mother is must be so hard to have your daughter diagnosed at

such a young age. There are a number of mothers with children on this board,

as well as on www.igan.ca so you are in good company.

Welcome to the group.

In a message dated 7/19/2004 8:37:52 AM Pacific Daylight Time,

waterskiier77@... writes:

> My 12 year old daughter was diagnosed with IgA following a kidney

> biopsy in December 2002. She took an ACE for about a year and is

> currently taking an ARB to keep her protein/creatinine ratio low. She

> also takes fish oil. We found out on Friday that her total

> cholesterol is 247. I am looking for information about the

> relationship between cholesterol and IgA. Also, I am looking for

> other parents of children with IgA. We don't know anyone else with

> the disease or anyone else that has even heard of the disease before.

>

>

[Guest guest]

Hey,,,,my name is Crystal,,,,my duaghter who is 11 her name is April,,,was dx

with igan jan2002...she at first was on 12 diff meds,,,along with

prednisone,,,now she is on 6 meds now,,,and that includes a antibotic fr 6

months

straight,,,because she keeps getting uti's....whats meds is your daughter on at

this

point?....by the way where are you from?..we live in south carolina,,,,god

bless u and your daughter,,,,Crystal

[Guest guest]

Hey,,,,my name is Crystal,,,,my duaghter who is 11 her name is April,,,was dx

with igan jan2002...she at first was on 12 diff meds,,,along with

prednisone,,,now she is on 6 meds now,,,and that includes a antibotic fr 6

months

straight,,,because she keeps getting uti's....whats meds is your daughter on at

this

point?....by the way where are you from?..we live in south carolina,,,,god

bless u and your daughter,,,,Crystal

[Guest guest]

Hey,,,,my name is Crystal,,,,my duaghter who is 11 her name is April,,,was dx

with igan jan2002...she at first was on 12 diff meds,,,along with

prednisone,,,now she is on 6 meds now,,,and that includes a antibotic fr 6

months

straight,,,because she keeps getting uti's....whats meds is your daughter on at

this

point?....by the way where are you from?..we live in south carolina,,,,god

bless u and your daughter,,,,Crystal

[Guest guest]

Welcome to the group.

High cholesterol tend to go hand in hand with most glomerular kidney

diseases like IgAN. Heavy proteinuria can lead to low levels of protein in

the blood, which in turn causes higher cholesterol levels, but even chronic

mild-to-moderate levels of proteinuria seem to cause it. If your doctor can

bring the level of proteinuria down to manageable levels, the high

cholesterol may disappear.

Many adult IgAN patients end up on a cholesterol med like Lipitor or Zocor,

but, this may not be necessary for most children.

Most people who are diagnosed with IgAN or have a child or other relative

who is have never heard of it before. It's not that common a disease, even

though it's not really a rare disease either.

We have many parents of children with IgAN here, and there is also a special

forum for them in the IgAN Cafe, which you can access from www.igan.ca (this

is just an extension of this group, not a separate organization). In fact,

you might be interested in reading the back messages in that forum.

Pierre

List-owner

Webmaster www.igan.ca

My 12 year old daughter

> My 12 year old daughter was diagnosed with IgA following a kidney

> biopsy in December 2002. She took an ACE for about a year and is

> currently taking an ARB to keep her protein/creatinine ratio low. She

> also takes fish oil. We found out on Friday that her total

> cholesterol is 247. I am looking for information about the

> relationship between cholesterol and IgA. Also, I am looking for

> other parents of children with IgA. We don't know anyone else with

> the disease or anyone else that has even heard of the disease before.

>

>

[Guest guest]

Thanks Pierre. I went to the IgAN Cafe and read some of the back

messages. It was comforting to know that we aren't the only parents

that have walked this journey. Our daughter's nephrologist doesn't

use the 24 hour urine method, only the protein/creatinine ratio. Her

ratio has fluctuated between 1.23 (which it is currently) and as high

as 6 (a couple of different times). It seems strange to me that even

though her ratio is lower at the moment, her cholersterol is still so

high. She's never been on prednisone. We are wondering if that would

help her. We have resisted it so far, because of her age and not

wanting the side effects to affect her growth and development. We are

going to see her doctor this afternoon.

> Welcome to the group.

>

> High cholesterol tend to go hand in hand with most glomerular kidney

> diseases like IgAN. Heavy proteinuria can lead to low levels of

protein in

> the blood, which in turn causes higher cholesterol levels, but even

chronic

> mild-to-moderate levels of proteinuria seem to cause it. If your

doctor can

> bring the level of proteinuria down to manageable levels, the high

> cholesterol may disappear.

>

> Many adult IgAN patients end up on a cholesterol med like Lipitor or

Zocor,

> but, this may not be necessary for most children.

>

> Most people who are diagnosed with IgAN or have a child or other

relative

> who is have never heard of it before. It's not that common a

disease, even

> though it's not really a rare disease either.

>

> We have many parents of children with IgAN here, and there is also a

special

> forum for them in the IgAN Cafe, which you can access from

www.igan.ca (this

> is just an extension of this group, not a separate organization). In

fact,

> you might be interested in reading the back messages in that forum.

>

> Pierre

> List-owner

> Webmaster www.igan.ca

>

>

>

> My 12 year old daughter

>

>

> > My 12 year old daughter was diagnosed with IgA following a kidney

> > biopsy in December 2002. She took an ACE for about a year and is

> > currently taking an ARB to keep her protein/creatinine ratio low. She

> > also takes fish oil. We found out on Friday that her total

> > cholesterol is 247. I am looking for information about the

> > relationship between cholesterol and IgA. Also, I am looking for

> > other parents of children with IgA. We don't know anyone else with

> > the disease or anyone else that has even heard of the disease before.

> >

> >

[Guest guest]

Thanks Pierre. I went to the IgAN Cafe and read some of the back

messages. It was comforting to know that we aren't the only parents

that have walked this journey. Our daughter's nephrologist doesn't

use the 24 hour urine method, only the protein/creatinine ratio. Her

ratio has fluctuated between 1.23 (which it is currently) and as high

as 6 (a couple of different times). It seems strange to me that even

though her ratio is lower at the moment, her cholersterol is still so

high. She's never been on prednisone. We are wondering if that would

help her. We have resisted it so far, because of her age and not

wanting the side effects to affect her growth and development. We are

going to see her doctor this afternoon.

> Welcome to the group.

>

> High cholesterol tend to go hand in hand with most glomerular kidney

> diseases like IgAN. Heavy proteinuria can lead to low levels of

protein in

> the blood, which in turn causes higher cholesterol levels, but even

chronic

> mild-to-moderate levels of proteinuria seem to cause it. If your

doctor can

> bring the level of proteinuria down to manageable levels, the high

> cholesterol may disappear.

>

> Many adult IgAN patients end up on a cholesterol med like Lipitor or

Zocor,

> but, this may not be necessary for most children.

>

> Most people who are diagnosed with IgAN or have a child or other

relative

> who is have never heard of it before. It's not that common a

disease, even

> though it's not really a rare disease either.

>

> We have many parents of children with IgAN here, and there is also a

special

> forum for them in the IgAN Cafe, which you can access from

www.igan.ca (this

> is just an extension of this group, not a separate organization). In

fact,

> you might be interested in reading the back messages in that forum.

>

> Pierre

> List-owner

> Webmaster www.igan.ca

>

>

>

> My 12 year old daughter

>

>

> > My 12 year old daughter was diagnosed with IgA following a kidney

> > biopsy in December 2002. She took an ACE for about a year and is

> > currently taking an ARB to keep her protein/creatinine ratio low. She

> > also takes fish oil. We found out on Friday that her total

> > cholesterol is 247. I am looking for information about the

> > relationship between cholesterol and IgA. Also, I am looking for

> > other parents of children with IgA. We don't know anyone else with

> > the disease or anyone else that has even heard of the disease before.

> >

> >

[Guest guest]

Thanks Pierre. I went to the IgAN Cafe and read some of the back

messages. It was comforting to know that we aren't the only parents

that have walked this journey. Our daughter's nephrologist doesn't

use the 24 hour urine method, only the protein/creatinine ratio. Her

ratio has fluctuated between 1.23 (which it is currently) and as high

as 6 (a couple of different times). It seems strange to me that even

though her ratio is lower at the moment, her cholersterol is still so

high. She's never been on prednisone. We are wondering if that would

help her. We have resisted it so far, because of her age and not

wanting the side effects to affect her growth and development. We are

going to see her doctor this afternoon.

> Welcome to the group.

>

> High cholesterol tend to go hand in hand with most glomerular kidney

> diseases like IgAN. Heavy proteinuria can lead to low levels of

protein in

> the blood, which in turn causes higher cholesterol levels, but even

chronic

> mild-to-moderate levels of proteinuria seem to cause it. If your

doctor can

> bring the level of proteinuria down to manageable levels, the high

> cholesterol may disappear.

>

> Many adult IgAN patients end up on a cholesterol med like Lipitor or

Zocor,

> but, this may not be necessary for most children.

>

> Most people who are diagnosed with IgAN or have a child or other

relative

> who is have never heard of it before. It's not that common a

disease, even

> though it's not really a rare disease either.

>

> We have many parents of children with IgAN here, and there is also a

special

> forum for them in the IgAN Cafe, which you can access from

www.igan.ca (this

> is just an extension of this group, not a separate organization). In

fact,

> you might be interested in reading the back messages in that forum.

>

> Pierre

> List-owner

> Webmaster www.igan.ca

>

>

>

> My 12 year old daughter

>

>

> > My 12 year old daughter was diagnosed with IgA following a kidney

> > biopsy in December 2002. She took an ACE for about a year and is

> > currently taking an ARB to keep her protein/creatinine ratio low. She

> > also takes fish oil. We found out on Friday that her total

> > cholesterol is 247. I am looking for information about the

> > relationship between cholesterol and IgA. Also, I am looking for

> > other parents of children with IgA. We don't know anyone else with

> > the disease or anyone else that has even heard of the disease before.

> >

> >

[Guest guest]

Let us know what her doctor says about it. We're always interested in that

sort of thing. Good luck.

Pierre

Re: My 12 year old daughter

> Thanks Pierre. I went to the IgAN Cafe and read some of the back

> messages. It was comforting to know that we aren't the only parents

> that have walked this journey. Our daughter's nephrologist doesn't

> use the 24 hour urine method, only the protein/creatinine ratio. Her

> ratio has fluctuated between 1.23 (which it is currently) and as high

> as 6 (a couple of different times). It seems strange to me that even

> though her ratio is lower at the moment, her cholersterol is still so

> high. She's never been on prednisone. We are wondering if that would

> help her. We have resisted it so far, because of her age and not

> wanting the side effects to affect her growth and development. We are

> going to see her doctor this afternoon.

>

>

>

[Guest guest]

Let us know what her doctor says about it. We're always interested in that

sort of thing. Good luck.

Pierre

Re: My 12 year old daughter

> Thanks Pierre. I went to the IgAN Cafe and read some of the back

> messages. It was comforting to know that we aren't the only parents

> that have walked this journey. Our daughter's nephrologist doesn't

> use the 24 hour urine method, only the protein/creatinine ratio. Her

> ratio has fluctuated between 1.23 (which it is currently) and as high

> as 6 (a couple of different times). It seems strange to me that even

> though her ratio is lower at the moment, her cholersterol is still so

> high. She's never been on prednisone. We are wondering if that would

> help her. We have resisted it so far, because of her age and not

> wanting the side effects to affect her growth and development. We are

> going to see her doctor this afternoon.

>

>

>

[Guest guest]

Let us know what her doctor says about it. We're always interested in that

sort of thing. Good luck.

Pierre

Re: My 12 year old daughter

> Thanks Pierre. I went to the IgAN Cafe and read some of the back

> messages. It was comforting to know that we aren't the only parents

> that have walked this journey. Our daughter's nephrologist doesn't

> use the 24 hour urine method, only the protein/creatinine ratio. Her

> ratio has fluctuated between 1.23 (which it is currently) and as high

> as 6 (a couple of different times). It seems strange to me that even

> though her ratio is lower at the moment, her cholersterol is still so

> high. She's never been on prednisone. We are wondering if that would

> help her. We have resisted it so far, because of her age and not

> wanting the side effects to affect her growth and development. We are

> going to see her doctor this afternoon.

>

>

>

[Guest guest]

My son was diagnosed at 13, but he is 24 now so I really no longer

qualify as a parent of a child with IgA. But I certainly remember how

much I worried about everything: the progression of the disease, the

effects of the medications, keeping the insurance company happy so

they'd keep paying, etc.

Good luck -

Betsy

> My 12 year old daughter was diagnosed with IgA following a kidney

> biopsy in December 2002.  She took an ACE for about a year and is

> currently taking an ARB to keep her protein/creatinine ratio low.  She

> also takes fish oil.  We found out on Friday that her total

> cholesterol is 247.  I am looking for information about the

> relationship between cholesterol and IgA.  Also, I am looking for

> other parents of children with IgA.  We don't know anyone else with

> the disease or anyone else that has even heard of the disease before.

[Guest guest]

Hi Crystal,

My daughter bet has been on relatively little medication. First

Vasotec (an ACE), in increasing amounts until she was so weak and

tired she couldn't function. Now, Diovan (an ARB). Her

protein/creatinine ratio is fairly low (1.3) at the moment. We live

in Pennsylvania. Besides the utis, how's your daughter doing now?

[Guest guest]

Hi Crystal,

My daughter bet has been on relatively little medication. First

Vasotec (an ACE), in increasing amounts until she was so weak and

tired she couldn't function. Now, Diovan (an ARB). Her

protein/creatinine ratio is fairly low (1.3) at the moment. We live

in Pennsylvania. Besides the utis, how's your daughter doing now?

[Guest guest]

Hi Crystal,

My daughter bet has been on relatively little medication. First

Vasotec (an ACE), in increasing amounts until she was so weak and

tired she couldn't function. Now, Diovan (an ARB). Her

protein/creatinine ratio is fairly low (1.3) at the moment. We live

in Pennsylvania. Besides the utis, how's your daughter doing now?

[Guest guest]

Thanks for writing Betsy. It can be totally overwhelming at times and

bet, my daugher is relatively healthy. How is your son doing

now, 11 years after dx?

> My son was diagnosed at 13, but he is 24 now so I really no longer

> qualify as a parent of a child with IgA.

[Guest guest]

hi laura,,,other than the uti's,,april is doing good,,,her creatitine level

was at .7 last time they checked it ,,it was .9...so it did rise a little,,but

she goes back next month and they will do more labs..i wanted to do labs thios

month cause i was worried about the raise in her levels,,,but the dr wanted

to wait till she came in his office,,,i will post more later after she goes to

her appt in aug...god bless you and your daughter,,,,,,crystal

[Guest guest]

hi laura,,,other than the uti's,,april is doing good,,,her creatitine level

was at .7 last time they checked it ,,it was .9...so it did rise a little,,but

she goes back next month and they will do more labs..i wanted to do labs thios

month cause i was worried about the raise in her levels,,,but the dr wanted

to wait till she came in his office,,,i will post more later after she goes to

her appt in aug...god bless you and your daughter,,,,,,crystal

[Guest guest]

Thanks for the welcome . My name is too. It's nice to

find others who know about IgAN. bet (my daughter)'s doctor

wasn't overly concerned about her 247 cholesterol when we saw him

yesterday. He thinks it probably was even higher and is on its way

down as her protein is also coming down. He said he'd check it again

in 6 months. Although I've never had any experience with email groups

before and don't know much about being on one, I'm grateful to have

found this one. -

> I am sorry your daughter has been diagnosed with IgAN.

....

> Welcome to the group.

>

[Guest guest]

Thanks for the welcome . My name is too. It's nice to

find others who know about IgAN. bet (my daughter)'s doctor

wasn't overly concerned about her 247 cholesterol when we saw him

yesterday. He thinks it probably was even higher and is on its way

down as her protein is also coming down. He said he'd check it again

in 6 months. Although I've never had any experience with email groups

before and don't know much about being on one, I'm grateful to have

found this one. -

> I am sorry your daughter has been diagnosed with IgAN.

....

> Welcome to the group.

>

[Guest guest]

My son was fairly stable for 5 years after dx. He was on prednisone for

a year at the beginning but it didn't seem to help. He was on ACE

inhibitor and fish oil after that. When he was 18, kidney function

began to decline, and he got a kidney transplant at 21, three years

ago. He had a flare-up of the IgAN last spring but is doing well now.

His IgAN was considered moderately progressive. Most people have the

more slowly progressive type and a few have rapidly progressive IgAN.

Betsy

> Thanks for writing Betsy.  It can be totally overwhelming at times and

> bet, my daugher is relatively healthy.  How is your son doing

> now, 11 years after dx?

[Guest guest]

My son was fairly stable for 5 years after dx. He was on prednisone for

a year at the beginning but it didn't seem to help. He was on ACE

inhibitor and fish oil after that. When he was 18, kidney function

began to decline, and he got a kidney transplant at 21, three years

ago. He had a flare-up of the IgAN last spring but is doing well now.

His IgAN was considered moderately progressive. Most people have the

more slowly progressive type and a few have rapidly progressive IgAN.

Betsy

> Thanks for writing Betsy.  It can be totally overwhelming at times and

> bet, my daugher is relatively healthy.  How is your son doing

> now, 11 years after dx?

[Guest guest]

My son was fairly stable for 5 years after dx. He was on prednisone for

a year at the beginning but it didn't seem to help. He was on ACE

inhibitor and fish oil after that. When he was 18, kidney function

began to decline, and he got a kidney transplant at 21, three years

ago. He had a flare-up of the IgAN last spring but is doing well now.

His IgAN was considered moderately progressive. Most people have the

more slowly progressive type and a few have rapidly progressive IgAN.

Betsy

> Thanks for writing Betsy.  It can be totally overwhelming at times and

> bet, my daugher is relatively healthy.  How is your son doing

> now, 11 years after dx?