Welcome

[Guest guest]

Hi all! I've been out of the loop lately but I just have to respond to all the talk on pred. I presented back in 1998 with 2000mg/24hrs proteinuria, normal BP, microscopic hematuria, and normal creatnine. IgAN was, to me, just something I had, like a pair of socks. I didn't think about it or take it seriously. I made zero changes to my life. Things pretty much remained unchanged until Dec 1999 when the proteinuria shot up to 4500mg. Things got worse and I started 120mg pred alternate day therapy to try and go proactive with the disease. I started fish oil, Vit E, and ramipril, too. Things continued to get worse as I hit 6700mg proteinuria. My nephs ( three of them) are split on whether I am steroid responsive or not. I chose to stop taking pred because the side effects were intolerable for me. I had nausea, diarrhea, eyestrain, hip and leg pains and cramps, etc. But the worst effect for me was fatigue and a loss of mental acuity. It was difficult just getting thru the day and accomplishing anything. I've not taken steroids since May 2000 and have had less proteinuria than ever. I now try to stay prayed up, watch my diet and BP, although like Pierre I prefer salty fatty foods. I guess I would try pred again if things start to spin out of control, but I'll pass on any long term use of it. It was by far the worst experience I've had since this IgAN business started and my heart and prayers are with any who take that stuff.

Having said that it's clear that many people respond favorably to steroids but to my knowledge there is only one serious study that demonstrates a positive long term effect from pred. It was published in "The Lancet" around June or July 1999. I would encourage anyone interested in prednisone to obtain a copy from their neph. I read it and was'nt that impressed myself. The study was of a small, diverse group and, if memory serves one pred patient died and another developed diabetes, a documented side effect of the steroids.

As far as docs go, I want to hear them out and then decide for myself the course I'll take. I also accept responsibility for my decisions.

The best to you all,

in Georgia

[Guest guest]

Dear , I know that prednisone is probably a case where the cure is

worse than the illness, but I guess each has to find out for themselves

whether it works or not. The interesting thing is some people are very

responsive to it, some a little, and some not at all. Why, I wonder. My

son, , had a dramatic response to it and doesn't seem to complain of too

many side effects-yet!. I keep waiting for the other shoe to fall. His

mood swings, though, are unbelievable. I guess 16-year-olds have those

anyway, and add pred to the mix and it's really something. Have any of us

heard of anyone who has lasted a lifetime since diagnosis unscathed and they

never reach ESRD? Pam

>

>Reply-To: iga-nephropathyegroups

>To: <iga-nephropathyegroups>

>Subject: Re: Welcome

>Date: Tue, 16 Jan 2001 12:53:40 -0500

>

>Hi all! I've been out of the loop lately but I just have to respond to all

>the talk on pred. I presented back in 1998 with 2000mg/24hrs proteinuria,

>normal BP, microscopic hematuria, and normal creatnine. IgAN was, to me,

>just something I had, like a pair of socks. I didn't think about it or

>take it seriously. I made zero changes to my life. Things pretty much

>remained unchanged until Dec 1999 when the proteinuria shot up to 4500mg.

>Things got worse and I started 120mg pred alternate day therapy to try and

>go proactive with the disease. I started fish oil, Vit E, and ramipril,

>too. Things continued to get worse as I hit 6700mg proteinuria. My nephs

>( three of them) are split on whether I am steroid responsive or not. I

>chose to stop taking pred because the side effects were intolerable for me.

> I had nausea, diarrhea, eyestrain, hip and leg pains and cramps, etc.

>But the worst effect for me was fatigue and a loss of mental acuity. It was

>difficult just getting thru the day and accomplishing anything. I've not

>taken steroids since May 2000 and have had less proteinuria than ever. I

>now try to stay prayed up, watch my diet and BP, although like Pierre I

>prefer salty fatty foods. I guess I would try pred again if things start

>to spin out of control, but I'll pass on any long term use of it. It was

>by far the worst experience I've had since this IgAN business started and

>my heart and prayers are with any who take that stuff.

>

>Having said that it's clear that many people respond favorably to steroids

>but to my knowledge there is only one serious study that demonstrates a

>positive long term effect from pred. It was published in " The Lancet "

>around June or July 1999. I would encourage anyone interested in

>prednisone to obtain a copy from their neph. I read it and was'nt that

>impressed myself. The study was of a small, diverse group and, if memory

>serves one pred patient died and another developed diabetes, a documented

>side effect of the steroids.

>

>As far as docs go, I want to hear them out and then decide for myself the

>course I'll take. I also accept responsibility for my decisions.

>

>The best to you all,

>

> in Georgia

_________________________________________________________________

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[Guest guest]

Pamela:

I'm glad that is one of those fortunate people who respond to pred. It definitely can aggravate mood swings though. My first week on pred I lost several items and ran a red light in front of a policeman then told argued with him to the point he let me! Anyway, all the best.

in Georgia

Re: Welcome>Date: Tue, 16 Jan 2001 12:53:40 -0500>>Hi all! I've been out of the loop lately but I just have to respond to all >the talk on pred. I presented back in 1998 with 2000mg/24hrs proteinuria, >normal BP, microscopic hematuria, and normal creatnine. IgAN was, to me, >just something I had, like a pair of socks. I didn't think about it or >take it seriously. I made zero changes to my life. Things pretty much >remained unchanged until Dec 1999 when the proteinuria shot up to 4500mg. >Things got worse and I started 120mg pred alternate day therapy to try and >go proactive with the disease. I started fish oil, Vit E, and ramipril, >too. Things continued to get worse as I hit 6700mg proteinuria. My nephs >( three of them) are split on whether I am steroid responsive or not. I >chose to stop taking pred because the side effects were intolerable for me. > I had nausea, diarrhea, eyestrain, hip and leg pains and cramps, etc. >But the worst effect for me was fatigue and a loss of mental acuity. It was >difficult just getting thru the day and accomplishing anything. I've not >taken steroids since May 2000 and have had less proteinuria than ever. I >now try to stay prayed up, watch my diet and BP, although like Pierre I >prefer salty fatty foods. I guess I would try pred again if things start >to spin out of control, but I'll pass on any long term use of it. It was >by far the worst experience I've had since this IgAN business started and >my heart and prayers are with any who take that stuff.>>Having said that it's clear that many people respond favorably to steroids >but to my knowledge there is only one serious study that demonstrates a >positive long term effect from pred. It was published in "The Lancet" >around June or July 1999. I would encourage anyone interested in >prednisone to obtain a copy from their neph. I read it and was'nt that >impressed myself. The study was of a small, diverse group and, if memory >serves one pred patient died and another developed diabetes, a documented >side effect of the steroids.>>As far as docs go, I want to hear them out and then decide for myself the >course I'll take. I also accept responsibility for my decisions.>>The best to you all,>> in Georgia_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Since the disease was only first reported on in 1968, I'm not sure there

are very many people who have had it long enough that we can say they

lived a lifetime with it and died of old age, unless they were diagnosed

later in life, which is rare.

Pierre

Pamela Zaheri wrote:

>

> Have any

> of us heard of anyone who has lasted a lifetime since diagnosis

> unscathed

> and they

> never reach ESRD? Pam

>

[Guest guest]

Hiya newbie

 

My name is -May Minett, I'm 30 with mds too. Would love to catch up with

you and get to know you better. Please dont hesistate to contact me on

claire@...

 

Hope you enjoy the group. I need more friends like you and Kristy.

 

ttfn

 

-May Minett

[Guest guest]

My son has slanted eyes and wide spaced toe. Nothing else. He will be 2 on the

24th and has met his milestones except he is slow in language. The traits or

physical markers don't really mean mDs or Ds. I know an adult guy who has most

of the Ds traits and is mod-avg Ds functioning. I honestly was shocked he was

mosaic bc seems from first appearance to be Ds. Every single child is different

and affected differently. One thing I can say is how much better our lives are

bc our son is here.

Sent from 's iPhone

Welcome ! I am a new mother again to Zedekiah who is 3 wks old. He was

diagnosed with DS but we suspect that he also may have MDS. He shows the soft

markers of DS-simean line, extra skin on neck and the space between toes as well

as the slanted eyes and a complete AV Canal however his muscle tone is good, he

eats well and is pretty big for 3wks- he's 8 lbs 12 oz. Birth weight was 8lbs

5oz.

If you don't mind sharing as well as anyone else-what features have you noticed

that lead you to believe has MDS? We are considering having our sons

cells tested but we don't know if the sure signs are completely different from

DS or not. From what we've read children with MDS are higher functioning and we

notice a few things in our son that we believe may lead to an MDS diagnoses.

Sorry to ramble and again welcome.

Aisha

Mother to Tre' 11, Avari 6 and Zedekiah 3 weeks

Sent via BlackBerry from T-Mobile

Welcome

HI everyone! We have a new family joining us today. Here is what she had to

say....

I am the mother of a sweet three year old boy named . I suspect

he has mosiac down syndrome.

Thank you-

Montgomery

Hi , and welcome to our e-group! Please tells more about why you suspect

that has mDs? My name is and I live in Ohio, with my husband and

our 4 kids. 10, Hayden, 6, and our twin girls Adde and who are 3!!

Adde was born with mDs.

Feel free to ask any questions that you may have.

~ mom to Adde

[Guest guest]

Hello all-

I am new to this group.  I have so many questions for all of you and I am so

happy that I found this support group!  I am a mother to four beautiful

children.  (9), (7), (3) and (2). 

is my sweet boy who I suspect has mosaic downs.  When he was born (via

c-section) after hours of pushing and no progress- he was whisked away.  He was

a large baby 10lbs 5 oz. with a very large head.  They told me they thought he

might have hydrocephalus and that he had some characteristics of downs

syndrome.  They did an mri and watched him overnight.  The next day, the

doctor told me his mri was normal and that while he did have small low set ears

they were not concerned about downs as he did not show any other features of the

syndrome.  Well...three years have gone by...and within those three years we

have had many ups and downs.  did not reach his milestones when he

should have.  His eyes have a different

" look " to them.  His tounge protruded as an infant and he drolled all the

time.  He had lyrngomalacia (a weakening in his larynx) which caused him to

make goose wheezing like sounds when he was crawling around.  He has very low

muscle tone (hypotonia), had food aversions (vomited when I introduced textured

baby food to him).  To make a long story short as a mom of other children I

knew there was something " off " with development and he just does not

" fit in " with my other children.  He has a " special " look about him through his

eyes and nose.  He also has a very flat nasal bridge & fine straight hair.  He

is now three and a half and I have been to numerous doctors with all of my

concerns.  It just seems like someone who has:  hypotonia, sensory processing

disorder, severe speech delays, apraxia , flat nasal bridge, small low set

ears,  sleepy " puppy " almond shaped eyes, etc.  I know in my heart that he has

mosaic downs.  I am

desperately wanting a diagnosis so we can get him the therapy that he needs. 

Right now he only sees a speech therapist twice a week which is not enough.  We

have been to a genetecist and after much pushing they agreed to do a " fish "

test- they tested 205 cells.  The test results have come back " normal " .  I am

just so fustrated because most doctors when they look at think I am

crazy for thinking that he has mosaic downs.  They will just say " he doesn't

look downs " .   I am fustrated because his look is so " mild " they just assume

that he does not have it.  Anyhow....I am just very fustrated and would love to

hear anyone's opinions, thoughts, help, etc.  Thank you all so much in

advance!!

Montgomery

________________________________

To: imdsa <mosaicds >

Sent: Thu, February 11, 2010 5:26:42 PM

Subject: Welcome

 

HI everyone! We have a new family joining us today. Here is what she had to

say....

I am the mother of a sweet three year old boy named . I suspect

he has mosiac down syndrome.

Thank you-

Montgomery

Hi , and welcome to our e-group! Please tells more about why you suspect

that has mDs? My name is and I live in Ohio, with my husband and

our 4 kids. 10, Hayden, 6, and our twin girls Adde and who are 3!!

Adde was born with mDs.

Feel free to ask any questions that you may have.

~ mom to Adde

[Guest guest]

, I too am new to all of this and am in the same boat as you are with

regards to questions. The only thing we know is that our son's test was positive

for down's. To what degree we don't know because even now he is high functioning

to us compared to what we've read regarding characteristics of children with

down's. Our son moves a lot, eats well(pumping instead of nursing due to the

thick tongue). With all of this said, we like you are looking forward to getting

a true diagnosis so that we know what we are up against. Regardless we know that

we are truly blessed. As I was told God blesses the creme of the crop with

down's babies. Thanks for sharing.

Sent via BlackBerry from T-Mobile

Welcome

 

HI everyone! We have a new family joining us today. Here is what she had to

say....

I am the mother of a sweet three year old boy named . I suspect

he has mosiac down syndrome.

Thank you-

Montgomery

Hi , and welcome to our e-group! Please tells more about why you suspect

that has mDs? My name is and I live in Ohio, with my husband and

our 4 kids. 10, Hayden, 6, and our twin girls Adde and who are 3!!

Adde was born with mDs.

Feel free to ask any questions that you may have.

~ mom to Adde

[Guest guest]

They tested 205 cells? Believe it or not that is a very high number of cells to

be tested especially on the first test. Usually a fish tests 20 cells and then

parents have to fight to have a higher cell count because mDs is based on %s

sometimes it can take as many as 500 cell count to be absolutely sure. A moms

intuition is usually right. We are glad you are here

Sent from 's iPhone

On Feb 11, 2010, at 9:42 PM, Montgomery

wrote:

Hello all-

I am new to this group. I have so many questions for all of you and I am so

happy that I found this support group! I am a mother to four beautiful

children. (9), (7), (3) and (2).

is my sweet boy who I suspect has mosaic downs. When he was born (via

c-section) after hours of pushing and no progress- he was whisked away. He was

a large baby 10lbs 5 oz. with a very large head. They told me they thought he

might have hydrocephalus and that he had some characteristics of downs syndrome.

They did an mri and watched him overnight. The next day, the doctor told me his

mri was normal and that while he did have small low set ears they were not

concerned about downs as he did not show any other features of the syndrome.

Well...three years have gone by...and within those three years we have had many

ups and downs. did not reach his milestones when he should have. His

eyes have a different

" look " to them. His tounge protruded as an infant and he drolled all the time.

He had lyrngomalacia (a weakening in his larynx) which caused him to make goose

wheezing like sounds when he was crawling around. He has very low muscle tone

(hypotonia), had food aversions (vomited when I introduced textured baby food to

him). To make a long story short as a mom of other children I knew there was

something " off " with development and he just does not " fit in " with my

other children. He has a " special " look about him through his eyes and nose.

He also has a very flat nasal bridge & fine straight hair. He is now three and

a half and I have been to numerous doctors with all of my concerns. It just

seems like someone who has: hypotonia, sensory processing disorder, severe

speech delays, apraxia , flat nasal bridge, small low set ears, sleepy " puppy "

almond shaped eyes, etc. I know in my heart that he has mosaic downs. I am

desperately wanting a diagnosis so we can get him the therapy that he needs.

Right now he only sees a speech therapist twice a week which is not enough. We

have been to a genetecist and after much pushing they agreed to do a " fish "

test- they tested 205 cells. The test results have come back " normal " . I am

just so fustrated because most doctors when they look at think I am

crazy for thinking that he has mosaic downs. They will just say " he doesn't

look downs " . I am fustrated because his look is so " mild " they just assume

that he does not have it. Anyhow....I am just very fustrated and would love to

hear anyone's opinions, thoughts, help, etc. Thank you all so much in advance!!

Montgomery

________________________________

To: imdsa <mosaicds >

Sent: Thu, February 11, 2010 5:26:42 PM

Subject: Welcome

HI everyone! We have a new family joining us today. Here is what she had to

say....

I am the mother of a sweet three year old boy named . I suspect

he has mosiac down syndrome.

Thank you-

Montgomery

Hi , and welcome to our e-group! Please tells more about why you suspect

that has mDs? My name is and I live in Ohio, with my husband and

our 4 kids. 10, Hayden, 6, and our twin girls Adde and who are 3!!

Adde was born with mDs.

Feel free to ask any questions that you may have.

~ mom to Adde

[Guest guest]

Welcome both to the group. I do not post much here, but when my son was born he

had hypotonia and they suspected something and being over 35 they watch more

intensly. Well all ultrasounds and so came out normal trust me they were very

detailed too. Anyway the doctors told me MDS when he was born he only had the

eyes thing going and the space between the toes and that is it. He fed well the

first day was taking binkies(lol) and so forth. They tested 20 cells and out

positive all t21 and went to see the Gen.Dr. and they said he's doing very well,

she also wanted to test more cells but I declined, because as she explained

every child is different and will progress different reguardless what cells are

affected. He also reached all milestones up to 8 months and was saying mama,

dada, actually speech seems normal for right now so he doesn't receive speach

therapy, just pt therapy 2s a month. Hope that helps. Good luck and people

make more of an issue about things when they are born, trying to scare you, Now

when I look back of what I went through and now wish I could turn back time and

smack some of the people who worked in that hosital(lol).

>

> , I too am new to all of this and am in the same boat as you are with

regards to questions. The only thing we know is that our son's test was positive

for down's. To what degree we don't know because even now he is high functioning

to us compared to what we've read regarding characteristics of children with

down's. Our son moves a lot, eats well(pumping instead of nursing due to the

thick tongue). With all of this said, we like you are looking forward to getting

a true diagnosis so that we know what we are up against. Regardless we know that

we are truly blessed. As I was told God blesses the creme of the crop with

down's babies. Thanks for sharing.

> Sent via BlackBerry from T-Mobile

>

> Welcome

>

>  

> HI everyone! We have a new family joining us today. Here is what she had to

say....

>

> I am the mother of a sweet three year old boy named . I suspect

> he has mosiac down syndrome.

> Thank you-

> Montgomery

>

> Hi , and welcome to our e-group! Please tells more about why you

suspect that has mDs? My name is and I live in Ohio, with my

husband and our 4 kids. 10, Hayden, 6, and our twin girls Adde and

who are 3!! Adde was born with mDs.

> Feel free to ask any questions that you may have.

>

> ~ mom to Adde

>

>