introduction

[Guest guest]

Helen,

My daughter Kira, 6 was not diagnosed until she was around 5 yrs, she will

be 7 this November. We had always seen Kira as a slow learner with

crawling, speech and close contact compared to our other children. We have

three children -Louise, 7 and , 3.

The only thing you can really do is to get the paediatrician to do a blood

test to check for the extra chromosome, at the end of the day it will be an

education for him as well as you. The only people that can understand is

either all of us within the news group or a geneticist. That's how cleaver

we are!

Hope this helps

Best Regards

Rob Freeman

Chafford Hundred, Essex.

introduction

Hi all

My name is Helen and I have a son (just turned 3) called Bobby.

For some time I have been thinking he displays a few " Down's " type

behaviours and suddenly last week I really noticed his eyes properly and

realised he has the epicanthic fold, my partner has often commented on the

basic shape of his eyes being odd. (I think I was blinded to the problems so

much that I couldn't see what was right there in front of me).

Bobby's behaviour has become more unusual as he has got older although he

has always been extremely over affectionate we thought he would grow out of

it etc etc. He has a language delay and a few other symptoms.

I stumbled accidentally across www.mosaicdownsyndrome.com and it all

suddenly became clear.

I have noticed a few people have said their children were diagnosed quite

late and I assume these are the ones with fewer physical signs than others.

Basically I need more information to be armed with when we see the

paediatrician in a few weeks time and I also need to get a better idea of

whether or not I am really on the right track or if I am just clutching at

straws and making the answers fit.

I am at the end of my tether with his behaviour and very concerned for his

safety as he is a real houdini and likes to roam off with no sign of fear of

anyone or anything.

Helen

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

Correction

-Louise is 8, who is in her first year of karate, so you don't get these

things wrong!

Rob

introduction

Hi all

My name is Helen and I have a son (just turned 3) called Bobby.

For some time I have been thinking he displays a few " Down's " type

behaviours and suddenly last week I really noticed his eyes properly and

realised he has the epicanthic fold, my partner has often commented on the

basic shape of his eyes being odd. (I think I was blinded to the problems so

much that I couldn't see what was right there in front of me).

Bobby's behaviour has become more unusual as he has got older although he

has always been extremely over affectionate we thought he would grow out of

it etc etc. He has a language delay and a few other symptoms.

I stumbled accidentally across www.mosaicdownsyndrome.com and it all

suddenly became clear.

I have noticed a few people have said their children were diagnosed quite

late and I assume these are the ones with fewer physical signs than others.

Basically I need more information to be armed with when we see the

paediatrician in a few weeks time and I also need to get a better idea of

whether or not I am really on the right track or if I am just clutching at

straws and making the answers fit.

I am at the end of my tether with his behaviour and very concerned for his

safety as he is a real houdini and likes to roam off with no sign of fear of

anyone or anything.

Helen

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

Hi Rob .....and anyone else in the UK

I wonder if you would mind giving the name of your peadiatrician who did the

MDS testing.

I'm covering my back here before I know if I need to or not. Just in case

the paed we see has no idea what I am talking about when mentioning MDS I

thought it may be helpful to be able to give him names of other doctors who

have come across this condition.

We have an appointment with the GP next Wednesday to see if I can manage to

persuade him to do the tests or to at least speed up the paed appointment. I

am also going to contact the health visitor about this.

Helen :-)

Mum to Bobby 3 (?mds?) and a few others besides :-)

introduction

Hi all

My name is Helen and I have a son (just turned 3) called Bobby.

For some time I have been thinking he displays a few " Down's " type

behaviours and suddenly last week I really noticed his eyes properly and

realised he has the epicanthic fold, my partner has often commented on the

basic shape of his eyes being odd. (I think I was blinded to the problems so

much that I couldn't see what was right there in front of me).

Bobby's behaviour has become more unusual as he has got older although he

has always been extremely over affectionate we thought he would grow out of

it etc etc. He has a language delay and a few other symptoms.

I stumbled accidentally across www.mosaicdownsyndrome.com and it all

suddenly became clear.

I have noticed a few people have said their children were diagnosed quite

late and I assume these are the ones with fewer physical signs than others.

Basically I need more information to be armed with when we see the

paediatrician in a few weeks time and I also need to get a better idea of

whether or not I am really on the right track or if I am just clutching at

straws and making the answers fit.

I am at the end of my tether with his behaviour and very concerned for his

safety as he is a real houdini and likes to roam off with no sign of fear of

anyone or anything.

Helen

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

LOL Rob

A couple of my older lads do karate as well so I know what you mean. In my

case though it was .....if you can't beat them, join them so I also trained

for a while

Helen :-)

introduction

Hi all

My name is Helen and I have a son (just turned 3) called Bobby.

For some time I have been thinking he displays a few " Down's " type

behaviours and suddenly last week I really noticed his eyes properly and

realised he has the epicanthic fold, my partner has often commented on the

basic shape of his eyes being odd. (I think I was blinded to the problems so

much that I couldn't see what was right there in front of me).

Bobby's behaviour has become more unusual as he has got older although he

has always been extremely over affectionate we thought he would grow out of

it etc etc. He has a language delay and a few other symptoms.

I stumbled accidentally across www.mosaicdownsyndrome.com and it all

suddenly became clear.

I have noticed a few people have said their children were diagnosed quite

late and I assume these are the ones with fewer physical signs than others.

Basically I need more information to be armed with when we see the

paediatrician in a few weeks time and I also need to get a better idea of

whether or not I am really on the right track or if I am just clutching at

straws and making the answers fit.

I am at the end of my tether with his behaviour and very concerned for his

safety as he is a real houdini and likes to roam off with no sign of fear of

anyone or anything.

Helen

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

Helen,

The doctors name was Conlan, he no longer lives in our area I do believe he

was a Professor Conlon the testing was done through a local lab the health

care uses. And after this we had a meeting with some specialist geneticist

from Great Ormond Street that came to our local hospital, this is once every

couple of weeks thing that they do at that hospital anyway and they

explained it more.

She was the only one who knew what Kira had, and she had several other

doctors who had a serious look at Kira and could not diagnose what she had.

It was great to know more that the professionals for once.

Kristy e-mail probably gave you all the ammo you need for the visit!

Where are you from!

Rob

-Louise 9, Kira 6 (MDS) and 3 (Out of Control little devil, with

angelic tendencies)

Re: introduction

Hi Rob .....and anyone else in the UK

I wonder if you would mind giving the name of your peadiatrician who did the

MDS testing.

I'm covering my back here before I know if I need to or not. Just in case

the paed we see has no idea what I am talking about when mentioning MDS I

thought it may be helpful to be able to give him names of other doctors who

have come across this condition.

We have an appointment with the GP next Wednesday to see if I can manage to

persuade him to do the tests or to at least speed up the paed appointment. I

am also going to contact the health visitor about this.

Helen :-)

Mum to Bobby 3 (?mds?) and a few others besides :-)

introduction

Hi all

My name is Helen and I have a son (just turned 3) called Bobby.

For some time I have been thinking he displays a few " Down's " type

behaviours and suddenly last week I really noticed his eyes properly and

realised he has the epicanthic fold, my partner has often commented on the

basic shape of his eyes being odd. (I think I was blinded to the problems so

much that I couldn't see what was right there in front of me).

Bobby's behaviour has become more unusual as he has got older although he

has always been extremely over affectionate we thought he would grow out of

it etc etc. He has a language delay and a few other symptoms.

I stumbled accidentally across www.mosaicdownsyndrome.com and it all

suddenly became clear.

I have noticed a few people have said their children were diagnosed quite

late and I assume these are the ones with fewer physical signs than others.

Basically I need more information to be armed with when we see the

paediatrician in a few weeks time and I also need to get a better idea of

whether or not I am really on the right track or if I am just clutching at

straws and making the answers fit.

I am at the end of my tether with his behaviour and very concerned for his

safety as he is a real houdini and likes to roam off with no sign of fear of

anyone or anything.

Helen

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

Hi Kirsty,

My daughters (mds) 8 and Destiny 5 live in North Carolina, US. I had no idea there were so many people that even knew what mds was. Every time I have ever told people about it they looked very puzzled. Thanks for the welcome! I know it will help me just knowing there are others out there to communicate with that understand the many different things we all face.

Introduction

My name is . My oldest daughter, , turned 8 years old in May. We have known she had Mosaic DS since she was 10 months old.We just happened upon a specialist because a heart murmer was found who took one look at her and wanted us to have her checked for DS. We knew something wasn't right from the beginning. I had a terrible pregnancy and a was born with a type of blood poisoning she had contracted from me. The doctors did not have an idea of why or how. We were told it could affect her hearing and eye sight. I still hear from doctors, "You were too young to have a child with DS"I always just look at them and say nothing. started school a year late and is going to go through first grade again this year. She has progressed so much...but not enough to survive the new state curriculum. (It is tough for a typical child)But, we are thriving. She is now well, we have made it through almost a year without any major illness and her speech has really improved along with her hearing and eyesight. We now have hope that her ears may be well enough to remove any left pt tubes and repair the whole in her right eardrum. We also got a good report from the optometrist.It has been a tough year, my children have had to endure my separation from their dad and moving to a new home. But they have not only survived, but actually thrived. is a remarkable child in that she loves computers, vcrs, stereos, karaoke, and cash registers. She will work and watch until she figures her way into or out of anything. Until my boss stumbled onto the Mosaic DS website I had never even heard of another child with same condition. I had searched many libraries after we learned about her Mosaic DS and found nothing. I truly appreciate the opportunity to be able to communicate with other people who face the same or similar situations. Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

With MDS I have always been proactive! This helps me learn what my child

needs to know. I love learning and take a very active part in my daughters

Infant

and Toddlers Program. Actually the parent really is the program. They are only

there 1 or 2 hours a week. But we are there 24/7. We can do so much more! As

an example: They give me a list of skills for a certain age that is a

guidepost for learning. I in turn but toys that reflect what she needs to know

and we

start there. This makes it fun and really not work. Good luck, Alice Mom to

Dorothy 23 months, MDS

Alice Poholsky

cell

[Guest guest]

In a message dated 4/22/2004 12:21:07 AM Eastern Standard Time,

jonas359@... writes:

Devon is extremely social (she takes after her big sis!), and is progressing

nicely. She is lagging slightly behind with her fine and gross motor skills

(based off HELP charts). Her muscle tone is a bit low, but she startes PT next

week, so hopefully that will improve. My case worker thought she was a bit

young to start OT, therefore Devon is not receiving OT. I am wondering what

age kids with MDS, who show a need for OT, typically start?

It is not unusual to wait for OT until a child is in need of more fine motor

skills, also lots of times what we do overlaps so much that it doesn't matter

which therapy a child is enrolled in. More therapies won't help more, just

give more information if it is needed. If the PT can show you what to do you can

work with Devon on the exercises/activities shown. But it would not be a bad

idea to have an OT look at Devon to evaluate to see if everything's on track!

Hope that helps without actually seeing Devon or knowing more about him

specifically.

Sharon Kaye OT and parent

[Guest guest]

HI Dave,

Welcome to the group. We're sure glad you joined us. I also have hepatitis C,

and now beginning cirrhosis. I'm genotype 1b and just started treatment 2 weeks

ago, so I've had my second shot now. I'm on Roche's Pegasys, and 5 tablets of

Ribavirin each day. The shot of Pegasys is, of course, once a week.

I've heard horror stories from people treated at VA. A friend of mine, Pete

(Da Yooper), died while waiting for the VA to put him on the transplant list.

Which VA do you go to? Which state? The one in Minneapolis at least treats

with combo. That's the protocol now. They should put you on treatment even if

you do have a low viral load.

For info and support, you've come to the right place.

Again, welcome!

Colleen

Dave wrote:

I just found this group through a group search.

My name is Dave I am 47. I was DX with HCV and Cirrhosis in Dec. 2005,

and in August this year I was DX with Pancreatitis.

I am geno Type 1a stage 3 leaning heavely towards stage 4.

I have no Insurance so I go to the VA and I HATE THEM. They wouldn't

treat my Hep C with the Combo. Before I had to quit my job I was all

set up to start in March 2006, and they- the VA said my viral count was

too low and they wouldn't start me on it. I even had a 3- Months supply

I had gotten from Roach. Hell someone could have used it.

Well enough of me rambling I just wanted to Introduce myself to the

group.

THX -Dave

Group Email: livercirrhosissupport

web address:

http://groups.yahoo.com/group/livercirrhosissupport/

[Guest guest]

> I just found this group through a group search.

> My name is Dave I am 47. I was DX with HCV and Cirrhosis in Dec.

2005,

> and in August this year I was DX with Pancreatitis.

> I am geno Type 1a stage 3 leaning heavely towards stage 4.

> I have no Insurance so I go to the VA and I HATE THEM. They

wouldn't

> treat my Hep C with the Combo. Before I had to quit my job I was

all

> set up to start in March 2006, and they- the VA said my viral count

was

> too low and they wouldn't start me on it. I even had a 3- Months

supply

> I had gotten from Roach. Hell someone could have used it.

> Well enough of me rambling I just wanted to Introduce myself to the

> group.

> THX -Dave

>

>

>

> Group Email: livercirrhosissupport

> web address:

> http://groups.yahoo.com/group/livercirrhosissupport/

>

>

[Guest guest]

Didn't you have a blood test to detect the virus, and if so, did it come back

positive? And if so, have you had a liver biopsy?

If they can't use the veins in your arms, they could always use one on the

back of your hand, or even your leg if they have to. I would call the head of

the VA there, the Board of Directors, and your State Department of Health. With

the latter, ask for the managed care supervisor. They might say they don't

regulate the VA, but it's worth a shot.

Would you qualify for medicaid through your county department of human

services?

Colleen

Dave wrote:

> I just found this group through a group search.

> My name is Dave I am 47. I was DX with HCV and Cirrhosis in Dec.

2005,

> and in August this year I was DX with Pancreatitis.

> I am geno Type 1a stage 3 leaning heavely towards stage 4.

> I have no Insurance so I go to the VA and I HATE THEM. They

wouldn't

> treat my Hep C with the Combo. Before I had to quit my job I was

all

> set up to start in March 2006, and they- the VA said my viral count

was

> too low and they wouldn't start me on it. I even had a 3- Months

supply

> I had gotten from Roach. Hell someone could have used it.

> Well enough of me rambling I just wanted to Introduce myself to the

> group.

> THX -Dave

>

>

>

> Group Email: livercirrhosissupport

> web address:

> http://groups.yahoo.com/group/livercirrhosissupport/

>

>

[Guest guest]

Hi Dave,

Welcome!

I joined this group recently. Its the best support

I've received since being diagnosed.

Take care,

--- Dave wrote:

> I just found this group through a group search.

> My name is Dave I am 47. I was DX with HCV and

> Cirrhosis in Dec. 2005,

> and in August this year I was DX with Pancreatitis.

> I am geno Type 1a stage 3 leaning heavely towards

> stage 4.

> I have no Insurance so I go to the VA and I HATE

> THEM. They wouldn't

> treat my Hep C with the Combo. Before I had to quit

> my job I was all

> set up to start in March 2006, and they- the VA said

> my viral count was

> too low and they wouldn't start me on it. I even had

> a 3- Months supply

> I had gotten from Roach. Hell someone could have

> used it.

> Well enough of me rambling I just wanted to

> Introduce myself to the

> group.

> THX -Dave

>

>

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Welcome Dave,

I don't have any experience with the VA yet (dh is retired Air Force, so I guess

one day we'll be dealing with them). I'm sad to hear they aren't offering you

better care.

Ditto to other veins..just because the arms don't work, can't they use other

veins? hmmm.

I wish everyone could have an adovcate with them when they are sick and dealing

with the medical community. I think having an extra set of ears, eyes and

another informed mouth to help ask questions and sometimes push a little when it

is necessary would be good.

Best to you, Hang in there!

Pamela

Recent Activity

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find help & share

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to share ideas on

family cooking.

.

[Guest guest]

> > I just found this group through a group search.

> > My name is Dave I am 47. I was DX with HCV and Cirrhosis in Dec.

> 2005,

> > and in August this year I was DX with Pancreatitis.

> > I am geno Type 1a stage 3 leaning heavely towards stage 4.

> > I have no Insurance so I go to the VA and I HATE THEM. They

> wouldn't

> > treat my Hep C with the Combo. Before I had to quit my job I was

> all

> > set up to start in March 2006, and they- the VA said my viral

count

> was

> > too low and they wouldn't start me on it. I even had a 3- Months

> supply

> > I had gotten from Roach. Hell someone could have used it.

> > Well enough of me rambling I just wanted to Introduce myself to

the

> > group.

> > THX -Dave

> >

> >

> >

> > Group Email: livercirrhosissupport

> > web address:

> > http://groups.yahoo.com/group/livercirrhosissupport/

> >

> >

[Guest guest]

>

Yes I agree with the other veins and I deffinatelly agree with having

an advicate with you to be your ears. You tend to take people for

their word value, and it's natural for nice people especially those

whom are sick to not get upset and cause a scene.

So I really supose it's 1/2 my fault for NOT being assertative.

THX !!!! -Dave

> Welcome Dave,

>

> I don't have any experience with the VA yet (dh is retired Air

Force, so I guess one day we'll be dealing with them). I'm sad to

hear they aren't offering you better care.

>

> Ditto to other veins..just because the arms don't work, can't they

use other veins? hmmm.

>

> I wish everyone could have an adovcate with them when they are sick

and dealing with the medical community. I think having an extra set

of ears, eyes and another informed mouth to help ask questions and

sometimes push a little when it is necessary would be good.

>

> Best to you, Hang in there!

>

> Pamela

> Recent Activity

> a.. 2New Members

> Visit Your Group

> Yahoo! Groups

> Get cancer support

>

> Connect w/ others

>

> find help & share

>

> Yahoo! Health

> Looking for Love?

>

> Find relationship

>

> advice and answers.

>

> FruitaBü Group

> A Parent´s Place

>

> to share ideas on

>

> family cooking.

> .

>

>

>

[Guest guest]

>

> > I just found this group through a group search.

> > My name is Dave I am 47. I was DX with HCV and

> > Cirrhosis in Dec. 2005,

> > and in August this year I was DX with Pancreatitis.

> > I am geno Type 1a stage 3 leaning heavely towards

> > stage 4.

> > I have no Insurance so I go to the VA and I HATE

> > THEM. They wouldn't

> > treat my Hep C with the Combo. Before I had to quit

> > my job I was all

> > set up to start in March 2006, and they- the VA said

> > my viral count was

> > too low and they wouldn't start me on it. I even had

> > a 3- Months supply

> > I had gotten from Roach. Hell someone could have

> > used it.

> > Well enough of me rambling I just wanted to

> > Introduce myself to the

> > group.

> > THX -Dave

> >

> >

>

>

>

>

______________________________________________________________________

______________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

[Guest guest]

Hi, Dave. I'M bobby. I have cirrhosis due to alcoholism. I am sorry you are

sick, and have had to look us up. That being said, this is a great group of

folks. I have found this group invaluble, and have grow to love them all. I

understand your frustration. Before I got sick, I took care of my best friend,

who died of cirrhosis last year. She had fought for ssdi and finally got it just

before she died. They are dirt slow. I am seeing a laywer Thursday to begin my

first appeal on my disability case. Good luck with the VA, you might be better

off with medicare/medicaid. Bobby

Sent via BlackBerry from T-Mobile

Introduction

I just found this group through a group search.

My name is Dave I am 47. I was DX with HCV and Cirrhosis in Dec. 2005,

and in August this year I was DX with Pancreatitis.

I am geno Type 1a stage 3 leaning heavely towards stage 4.

I have no Insurance so I go to the VA and I HATE THEM. They wouldn't

treat my Hep C with the Combo. Before I had to quit my job I was all

set up to start in March 2006, and they- the VA said my viral count was

too low and they wouldn't start me on it. I even had a 3- Months supply

I had gotten from Roach. Hell someone could have used it.

Well enough of me rambling I just wanted to Introduce myself to the

group.

THX -Dave

[Guest guest]

I think it's a horrible shame how people who have served their country get no

help from the VA. And I think it's shameful of our current president to have cut

VA funding.

Colleen

Dave wrote:

> > I just found this group through a group search.

> > My name is Dave I am 47. I was DX with HCV and Cirrhosis in Dec.

> 2005,

> > and in August this year I was DX with Pancreatitis.

> > I am geno Type 1a stage 3 leaning heavely towards stage 4.

> > I have no Insurance so I go to the VA and I HATE THEM. They

> wouldn't

> > treat my Hep C with the Combo. Before I had to quit my job I was

> all

> > set up to start in March 2006, and they- the VA said my viral

count

> was

> > too low and they wouldn't start me on it. I even had a 3- Months

> supply

> > I had gotten from Roach. Hell someone could have used it.

> > Well enough of me rambling I just wanted to Introduce myself to

the

> > group.

> > THX -Dave

> >

> >

> >

> > Group Email: livercirrhosissupport

> > web address:

> > http://groups.yahoo.com/group/livercirrhosissupport/

> >

> >

[Guest guest]

Hi everyone,

I just wanted to introduce myself. My name is Dawn and I am here

because my mother-in-law has just been diagnosed with end stage liver

failure. None of us are quite sure what to expect with the progression

of this disease. They have given her 6-12 months to live. They have

hospice arranged but we would appreciate some information anyone could

provide on what we should expect. Right now, other than being tired,

she is still pretty much doing things as she always has. Maybe a little

more confusion and some memory loss but she has been suffering from

that for awhile. We would just like like to all be prepared for what is

to come so any help would be great.

Dawn