Re: reply to Patty about MCD, was Am i tempting fate...

[Guest guest]

In a message dated 2/20/04 4:31:46 PM Eastern Standard Time,

carneyval@... writes:

<<

Well, I am sure that is more than anyone ever wanted to know about MCD.

LOL. I should put a warning on my posts.

Val

Rob's Mom (6,systemic)

In a message dated 2/19/2004 5:45:36 PM Eastern Standard Time, Emeraldsx3

writes:

>>

Thanks Val. I had never heard of it. I am learning something new everyday

here. You did a great job explaining it.

Take care.

Patty

[Guest guest]

Hi Patty,

I am glad when any of my ramblings help... My ex used to say that I took

longer to tell a story than anyone he knew (I used to say I'm all about

details.)

Minimal Change Disease is a condition of the Kidneys that is triggered by the

immune system going into overdrive. (Imagine that) - much like JRA they believe

that you already have the gene that is going to allow it to be triggered and

then one day " Surprise! " They don't know what causes it, and they say it isn't

connected/related to his JRA. (That I am not so sure of). It is more common in

boys than girls, and usually occurs between the ages 3 - 5. The nephrologist

told me that often a child will have one episode and that will be it. They said

that if they go six months without a flare after the first one, without

medication, it is considered in remission. Robbie lasted five months. She said

that if it doesn't go away in the first year - that they " outgrow " it during

puberty. I was led to believe that he would not have it all his life. Since

then, I have met two adult males who have had it since childhood.

During a flare The part of the kidney that filters (the glomerulus) stops

functioning properly, the body slows or nearly stops it's urinary output, the

body becomes swollen as it retains fluid. When the flare is in it's early

stages there is significant protein in the urine, and you begin to see early

signs of fluid retention (In Robbie's case the skin around his eyes starts to

get puffy, and then his abdomen becomes distended. Next comes abdominal pain,

then noticable decrease in urine output and overall fluid retention in the body.

The first time Robbie flared, I was terrified, thinking kidney failure. The

only real way to be confirm the diagnosis is with a kidney biopsy, which Rob

never had. However, another diagnostic tool is that for some reason the Serum

Cholesterol is elevated. When Rob is flareing (with MCD,not JRA) his

Cholesterol goes sky high. Normally it is well within the normal range. He was

hospitalized twice with it - the first time when he was diagnosed was about a

year and one week before he first started having JRA symptoms. (Robbie has

systemic onset JRA, and so much literature talks about having systemic symptoms

up to a year before the related arthritic symptoms.) A year after the first

episode when his joint pain and typical systemic symptoms began occuring (fever,

rash and eventually liver and spleen involvement) he presented with protein in

the urine, so they thought that he was having a flare of MCD - I kept saying

that something else was going on (no puffy face, no abdominal pain) - but since

the proteinuria persisted, they began the steriods - which also helped the JRA

symptoms - which convinced them that they were right, until his JRA symptoms

came back with a vengenace as the taper got low, and put him back in the

hospital. Anyway, it is called Minimal Change Disease, because when observing

the affected glomerulus (the filtering part of the kidney) it looks just the

same as a " normal " one - but under super strong magnification there is an

observable " Minimal Change "

Robbie hasn't had a flare of the MCD since he was diagnosed with JRA - but that

is probably because he hasn't been off steriods since he was diagnosed with JRA

- and he has been on Cyclosporine since about a month after he was diagnosed

with JRA for his JRA and cyclosporine is the second drug of choice for a flare

of MCD, when the patient doesn't respond to steriods. The first two times that

he was in the hospital with the MCD he required IV steriods to get his kidneys

functioning properly. The third time when he also had the JRA symptoms, the

oral steriods did he trick. He probably was starting to flare - the ear

infection that triggered the immune system to flare up was probably causing

both. Anyway, anytime he has a cold, or any illness that triggers the immune

system, I have to start checking his urine for protein daily for a couple of

weeks to be sure that the kidneys are acting up. The Nephrologist thinks he

won't have a flare as long as he is on the steriods and cyclosporine.

Well, I am sure that is more than anyone ever wanted to know about MCD. LOL. I

should put a warning on my posts.

Val

Rob's Mom (6,systemic)

In a message dated 2/19/2004 5:45:36 PM Eastern Standard Time, Emeraldsx3

writes:

>

>

> In a message dated 2/19/04 11:18:09 AM Eastern Standard Time,

> carneyval@... writes:

>

> << ting his Minimal Change Disease - before he developed his JRA symptoms -

> and that worked really well - the the taper would go quickly and be successful

> - usually it would take about six months before a flare of the MCD would

occur.

>

> Sorry - I seem to be going on and on. I hope you and Nick are successful

> and can quickly wean him from the steriods.

>

> Val

> Rob's Mom (6,systemic)

> >>

> Hi Val:

>

> I read your post with great interest as we are still in the tapering mode

> with Caitlin on the Prednisone. Your son's experience is certainly a wake up

> call to really take the tapering slow. Thank you for

> sharing.

>

> A question: What is minimal change disease?

>

> Thanks.

> Patty

>

>

>

>

>

[Guest guest]

Val,

That was so interesting... Now why cant the doctors and all the "experts" write things in laymans turns like that and perhaps the world could understand more!! ))) Well At least I could ))))

I had no idea Robbie was dealingf with that too... yikes!!

Hugs Helen...mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: carneyval@... >Reply- > >Subject: Re: reply to Patty about MCD, was Am i tempting fate... >Date: Fri, 20 Feb 2004 16:28:56 -0500 > >Hi Patty, >I am glad when any of my ramblings help... My ex used to say that I took longer to tell a story than anyone he knew (I used to say I'm all about details.) > >Minimal Change Disease is a condition of the Kidneys that is triggered by the immune system going into overdrive. (Imagine that) - much like JRA they believe that you already have the gene that is going to allow it to be triggered and then one day "Surprise!" They don't know what causes it, and they say it isn't connected/related to his JRA. (That I am not so sure of). It is more common in boys than girls, and usually occurs between the ages 3 - 5. The nephrologist told me that often a child will have one episode and that will be it. They said that if they go six months without a flare after the first one, without medication, it is considered in remission. Robbie lasted five months. She said that if it doesn't go away in the first year - that they "outgrow" it during puberty. I was led to believe that he would not have it all his life. Since then, I have met two adult males who have had it since childhood. > >During a flare The part of the kidney that filters (the glomerulus) stops functioning properly, the body slows or nearly stops it's urinary output, the body becomes swollen as it retains fluid. When the flare is in it's early stages there is significant protein in the urine, and you begin to see early signs of fluid retention (In Robbie's case the skin around his eyes starts to get puffy, and then his abdomen becomes distended. Next comes abdominal pain, then noticable decrease in urine output and overall fluid retention in the body. The first time Robbie flared, I was terrified, thinking kidney failure. The only real way to be confirm the diagnosis is with a kidney biopsy, which Rob never had. However, another diagnostic tool is that for some reason the Serum Cholesterol is elevated. When Rob is flareing (with MCD,not JRA) his Cholesterol goes sky high. Normally it is well within the normal range. He was hospitalized twice with it - the first time when he was diagnosed was about a year and one week before he first started having JRA symptoms. (Robbie has systemic onset JRA, and so much literature talks about having systemic symptoms up to a year before the related arthritic symptoms.) A year after the first episode when his joint pain and typical systemic symptoms began occuring (fever, rash and eventually liver and spleen involvement) he presented with protein in the urine, so they thought that he was having a flare of MCD - I kept saying that something else was going on (no puffy face, no abdominal pain) - but since the proteinuria persisted, they began the steriods - which also helped the JRA symptoms - which convinced them that they were right, until his JRA symptoms came back with a vengenace as the taper got low, and put him back in the hospital. Anyway, it is called Minimal Change Disease, because when observing the affected glomerulus (the filtering part of the kidney) it looks just the same as a "normal" one - but under super strong magnification there is an observable "Minimal Change" > >Robbie hasn't had a flare of the MCD since he was diagnosed with JRA - but that is probably because he hasn't been off steriods since he was diagnosed with JRA - and he has been on Cyclosporine since about a month after he was diagnosed with JRA for his JRA and cyclosporine is the second drug of choice for a flare of MCD, when the patient doesn't respond to steriods. The first two times that he was in the hospital with the MCD he required IV steriods to get his kidneys functioning properly. The third time when he also had the JRA symptoms, the oral steriods did he trick. He probably was starting to flare - the ear infection that triggered the immune system to flare up was probably causing both. Anyway, anytime he has a cold, or any illness that triggers the immune system, I have to start checking his urine for protein daily for a couple of weeks to be sure that the kidneys are acting up. The Nephrologist thinks he won't have a flare as long as he is on the steriods and cyclosporine. > >Well, I am sure that is more than anyone ever wanted to know about MCD. LOL. I should put a warning on my posts. >Val >Rob's Mom (6,systemic) >In a message dated 2/19/2004 5:45:36 PM Eastern Standard Time, Emeraldsx3 writes: > > > > > > > In a message dated 2/19/04 11:18:09 AM Eastern Standard Time, > > carneyval@... writes: > > > > << ting his Minimal Change Disease - before he developed his JRA symptoms - > > and that worked really well - the the taper would go quickly and be successful > > - usually it would take about six months before a flare of the MCD would occur. > > > > Sorry - I seem to be going on and on. I hope you and Nick are successful > > and can quickly wean him from the steriods. > > > > Val > > Rob's Mom (6,systemic) > > >> > > Hi Val: > > > > I read your post with great interest as we are still in the tapering mode > > with Caitlin on the Prednisone. Your son's experience is certainly a wake up > > call to really take the tapering slow. Thank you for > > sharing. > > > > A question: What is minimal change disease? > > > > Thanks. > > Patty > > > > > > > > > >

[Guest guest]

Hi Helen,

Thanks for the compliment regarding my rambling - though the Doc's probably

wouldn't get it! Yes, the MCD really had me going - I remember when the JRA

started, telling someone, " But I just got comfortable watching for the MCD signs

and now this??? " The MCD is in the back of my mind - in fact with the recent

ear infection and conjunctivitis I've had to start testing his urine again

(negative, thankfully - I'd hate to think what it would mean if we had to raise

the steriods now because of the MCD!) - but sometime I forget about it

completely - though if his meds weren't holding that at bay too, I probably

wouldn't forget! Take care!

Val

Rob's mom (6,systemic)

In a message dated 2/20/2004 4:47:08 PM Eastern Standard Time,

hburger64@... writes:

>

>

>

> Val,

> That was so interesting... Now why cant the doctors and all the " experts "

write things in laymans turns like that and perhaps the world could understand

more!! ))) Well At least I could ))))

> I had no idea Robbie was dealingf with that too... yikes!!

> Hugs Helen...mom to (6,systemic)

>

>

>

>

>

> Hugs..Helen

> DH Dan

> DS's (20)(14)(12)Zachary(9)(6)

> DD (4)

> >From: carneyval@... >Reply- >To:

>Subject: Re: reply to Patty about MCD, was Am i

tempting fate... >Date: Fri, 20 Feb 2004 16:28:56 -0500 > >Hi Patty, >I am glad

when any of my ramblings help... My ex used to say that I took longer to tell

a story than anyone he knew (I used to say I'm all about details.) > >Minimal

Change Disease is a condition of the Kidneys that is triggered by the immune

system going into overdrive. (Imagine that) - much like JRA they believe that

you already have the gene that is going to allow it to be triggered and then one

day " Surprise! " They don't know what causes it, and they say it isn't

connected/related to his JRA. (That I am not so sure of). It is more common in

boys than girls, and usually occurs between the ages 3 - 5. The nephrologist

told me that often a child will have one episode and that will be it. They said

that if they go six months without a flare after the first one, without

medication, it is considered in remission. Robbie lasted five months. She said

that if it doesn't go away in the first year - that they " outgrow " it during

puberty. I was led to believe that he would not have it all his life. Since

then, I have met two adult males who have had it since childhood. > >During a

flare The part of the kidney that filters (the glomerulus) stops functioning

properly, the body slows or nearly stops it's urinary output, the body becomes

swollen as it retains fluid. When the flare is in it's early stages there is

significant protein in the urine, and you begin to see early signs of fluid

retention (In Robbie's case the skin around his eyes starts to get puffy, and

then his abdomen becomes distended. Next comes abdominal pain, then noticable

decrease in urine output and overall fluid retention in the body. The first time

Robbie flared, I was terrified, thinking kidney failure. The only real way to be

confirm the diagnosis is with a kidney biopsy, which Rob never had. However,

another diagnostic tool is that for some reason the Serum Cholesterol is

elevated. When Rob is flareing (with MCD,not JRA) his Cholesterol goes sky high.

Normally it is well within the normal range. He was hospitalized twice with it -

the first time when he was diagnosed was about a year and one week before he

first started having JRA symptoms. (Robbie has systemic onset JRA, and so much

literature talks about having systemic symptoms up to a year before the related

arthritic symptoms.) A year after the first episode when his joint pain and

typical systemic symptoms began occuring (fever, rash and eventually liver and

spleen involvement) he presented with protein in the urine, so they thought that

he was having a flare of MCD - I kept saying that something else was going on

(no puffy face, no abdominal pain) - but since the proteinuria persisted, they

began the steriods - which also helped the JRA symptoms - which convinced them

that they were right, until his JRA symptoms came back with a vengenace as the

taper got low, and put him back in the hospital. Anyway, it is called Minimal

Change Disease, because when observing the affected glomerulus (the filtering

part of the kidney) it looks just the same as a " normal " one - but under super

strong magnification there is an observable " Minimal Change " > >Robbie hasn't

had a flare of the MCD since he was diagnosed with JRA - but that is probably

because he hasn't been off steriods since he was diagnosed with JRA - and he has

been on Cyclosporine since about a month after he was diagnosed with JRA for his

JRA and cyclosporine is the second drug of choice for a flare of MCD, when the

patient doesn't respond to steriods. The first two times that he was in the

hospital with the MCD he required IV steriods to get his kidneys functioning

properly. The third time when he also had the JRA symptoms, the oral steriods

did he trick. He probably was starting to flare - the ear infection that

triggered the immune system to flare up was probably causing both. Anyway,

anytime he has a cold, or any illness that triggers the immune system, I have to

start checking his urine for protein daily for a couple of weeks to be sure that

the kidneys are acting up. The Nephrologist thinks he won't have a flare as long

as he is on the steriods and cyclosporine. > >Well, I am sure that is more than

anyone ever wanted to know about MCD. LOL. I should put a warning on my posts.

>Val >Rob's Mom (6,systemic) >In a message dated 2/19/2004 5:45:36 PM Eastern

Standard Time, Emeraldsx3 writes: > > > > > > > In a message dated 2/19/04

11:18:09 AM Eastern Standard Time, > > carneyval@... writes: > > > > << ting

his Minimal Change Disease - before he developed his JRA symptoms - > > and that

worked really well - the the taper would go quickly and be successful > > -

usually it would take about six months before a flare of the MCD would occur. >

> > > Sorry - I seem to be going on and on. I hope you and Nick are successful >

> and can quickly wean him from the steriods. > > > > Val > > Rob's Mom

(6,systemic) > > >> > > Hi Val: > > > > I read your post with great interest as

we are still in the tapering mode > > with Caitlin on the Prednisone. Your son's

experience is certainly a wake up > > call to really take the tapering slow.

Thank you for > > sharing. > > > > A question: What is minimal change disease? >

> > > Thanks. > > Patty > > > > > > > > > >