Re: Hi from the New Family

[Guest guest]

I am so glad this little one has found you. I do not understand why her being

in foster care and on medicaid would stop her from having genetic testing. If

they think their could be a problem they should want to know so she can get all

of the health test done that come along with mds or any chromosome disorder, one

would think. If she does have mds she would have to have all of the same test

that a child with ds gets, like heart, thyroid, eyes etc. Although the more and

more I see what the system does it would not surprise me if they did not want to

do the testing. I think I would just insist. She should also qualify for early

intervention which is a huge help. She sounds adorable how long will it be

before the adoption goes through?

Sue

Isabella mds 15 months

Hi from the " New Family "

Sorry it's taken me so long to come say HI, but life has been

hectic. My daughters GI doctor thinks she may have Mosaic Down's.

We didn't speak to him directly about it, but got the news from our

pediatrician. I'll give you all the info I can and see what you all

think.

Little One (sorry I can't post a name until she's adopted) was born 2

months premature to a mom who had no prenatal care and tested

positive for drugs. She had a traumatic birth (had to be

resusitated) and began having seizures immediately. Anyway, since

then she's had multiple health issues. She aspirates and has GERD.

She got a feeding tube at 9 months old which has helped alot. She

has lots of issues with diarrhea and constipation. They say she has

malabsorption and a milk protein intolerance. She's teeny tiny. At

nearly 18 months she weighs about 19 lbs and is about 27 inches

tall. Her feet are very little. She still wears size 1.

She is hearing impaired and wears hearing aides. She seems to have a

chronic cold and just got tubes in a few weeks ago. She does not

speak any words yet, but knows about 7 signs.

The one thing that the GI doc mentioned on the last visit is that her

hair is thin?

Anyway, that's probably more than everyone wanted to know. But if

anyone has any insight, please share. We are going to ask for

genetic testing, but we know it will be a long wait for that since

she's still a foster child and on medicaid.

Thanks!

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals.yahoo.com/tc/blockbuster/text5.com

[Guest guest]

Hi , yes I agree with Sue, you should insist on genetic testing becuase

wether its mds or ds there could be other factors. Ive heard of people finding

out other chromosome disorders along with ds but also you need a diagnosis so

you can get her into early intervention. Early intervention has helped my 10

month old son tremendously and they need to have that diagnosis paper work, plus

you should get social security and other benefits for her so she can have the

BEST medical care posible. I am excited for you and Im sure she will bring a lot

of joy into your life. She sounds like a strong little girl! There is a book

called, " Babies with Down Syndrome, a new parents guide, second edition. " I

highly reccomend this book to new parents like us, it is very informative not

only on the health issues but also on the legal issues and resources available.

Congratulations on the new addition to your family and I will pray for you all.

Marriah mom of Gideon, 10 months old

Sue wrote:

I am so glad this little one has found you. I do not understand why

her being in foster care and on medicaid would stop her from having genetic

testing. If they think their could be a problem they should want to know so she

can get all of the health test done that come along with mds or any chromosome

disorder, one would think. If she does have mds she would have to have all of

the same test that a child with ds gets, like heart, thyroid, eyes etc. Although

the more and more I see what the system does it would not surprise me if they

did not want to do the testing. I think I would just insist. She should also

qualify for early intervention which is a huge help. She sounds adorable how

long will it be before the adoption goes through?

Sue

Isabella mds 15 months

Hi from the " New Family "

Sorry it's taken me so long to come say HI, but life has been

hectic. My daughters GI doctor thinks she may have Mosaic Down's.

We didn't speak to him directly about it, but got the news from our

pediatrician. I'll give you all the info I can and see what you all

think.

Little One (sorry I can't post a name until she's adopted) was born 2

months premature to a mom who had no prenatal care and tested

positive for drugs. She had a traumatic birth (had to be

resusitated) and began having seizures immediately. Anyway, since

then she's had multiple health issues. She aspirates and has GERD.

She got a feeding tube at 9 months old which has helped alot. She

has lots of issues with diarrhea and constipation. They say she has

malabsorption and a milk protein intolerance. She's teeny tiny. At

nearly 18 months she weighs about 19 lbs and is about 27 inches

tall. Her feet are very little. She still wears size 1.

She is hearing impaired and wears hearing aides. She seems to have a

chronic cold and just got tubes in a few weeks ago. She does not

speak any words yet, but knows about 7 signs.

The one thing that the GI doc mentioned on the last visit is that her

hair is thin?

Anyway, that's probably more than everyone wanted to know. But if

anyone has any insight, please share. We are going to ask for

genetic testing, but we know it will be a long wait for that since

she's still a foster child and on medicaid.

Thanks!

__________________________________________________________

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals.yahoo.com/tc/blockbuster/text5.com

[Guest guest]

Hi

Do you know why the GI doctor thinks she has MDS? Does she have physical

characteristics that make the doctor think this? All the other problems she is

having could be because of the prematurity and drug abuse, but then they could

lean towards MDS also. I am not sure about the thin hair but if she has bald

patches it could be Alopecia Areata. Here is a link for that

http://www.ds-health.com/derm.htm

Is there any way around the genetic test wait? How soon will her adoption be

complete? My suggestion is, if you have to wait for the test and the doctor

really thinks she has MDS, then to just treat her as such. This mainly means

that she would need the health checks that are outlined for Down syndrome and to

continue with her therapy for speech and motor skills.

Welcome to our family!

Kristy

Mom to Arron 26, 23, Tim 21, Stevan 20, and Garrett 11

lazshay wrote:

Sorry it's taken me so long to come say HI, but life has been

hectic. My daughters GI doctor thinks she may have Mosaic Down's.

We didn't speak to him directly about it, but got the news from our

pediatrician. I'll give you all the info I can and see what you all

think.

Little One (sorry I can't post a name until she's adopted) was born 2

months premature to a mom who had no prenatal care and tested

positive for drugs. She had a traumatic birth (had to be

resusitated) and began having seizures immediately. Anyway, since

then she's had multiple health issues. She aspirates and has GERD.

She got a feeding tube at 9 months old which has helped alot. She

has lots of issues with diarrhea and constipation. They say she has

malabsorption and a milk protein intolerance. She's teeny tiny. At

nearly 18 months she weighs about 19 lbs and is about 27 inches

tall. Her feet are very little. She still wears size 1.

She is hearing impaired and wears hearing aides. She seems to have a

chronic cold and just got tubes in a few weeks ago. She does not

speak any words yet, but knows about 7 signs.

The one thing that the GI doc mentioned on the last visit is that her

hair is thin?

Anyway, that's probably more than everyone wanted to know. But if

anyone has any insight, please share. We are going to ask for

genetic testing, but we know it will be a long wait for that since

she's still a foster child and on medicaid.

Thanks!

Kristy Colvin

IMDSA President

____________________________________________________

International Mosaic Down Syndrome Association

PH: 1-

Toll Free: 1-888-MDS-LINK

www.imdsa.com

[Guest guest]

My Simeon is 1 year-old (as of April 1) and he just weighs 16 #. He

was even a whopping 8# at birth.

Perhaps the doctor thinks this (MDS) because of the multiple system

problems. Be aware that a blood test may come back negative for MDS,

as this may be in the tissues alone. (It sounds like it.)

<br>

>

> Sorry it's taken me so long to come say HI, but life has been

> hectic. My daughters GI doctor thinks she may have Mosaic

Down's.

> We didn't speak to him directly about it, but got the news from

our

> pediatrician. I'll give you all the info I can and see what you

all

> think.

>

> Little One (sorry I can't post a name until she's adopted) was

born 2

> months premature to a mom who had no prenatal care and tested

> positive for drugs. She had a traumatic birth (had to be

> resusitated) and began having seizures immediately. Anyway, since

> then she's had multiple health issues. She aspirates and has

GERD.

> She got a feeding tube at 9 months old which has helped alot. She

> has lots of issues with diarrhea and constipation. They say she

has

> malabsorption and a milk protein intolerance. She's teeny tiny.

At

> nearly 18 months she weighs about 19 lbs and is about 27 inches

> tall. Her feet are very little. She still wears size 1.

>

> She is hearing impaired and wears hearing aides. She seems to

have a

> chronic cold and just got tubes in a few weeks ago. She does not

> speak any words yet, but knows about 7 signs.

>

> The one thing that the GI doc mentioned on the last visit is that

her

> hair is thin?

>

> Anyway, that's probably more than everyone wanted to know. But if

> anyone has any insight, please share. We are going to ask for

> genetic testing, but we know it will be a long wait for that since

> she's still a foster child and on medicaid.

>

> Thanks!

>

>

[Guest guest]

It's not that they won't allow her to have the testing, it's just more of a time

thing. Hopefully we'll get to adopt her before summer. We've already had her

for about 17 months.

Sue wrote: I am so glad this little

one has found you. I do not understand why her being in foster care and on

medicaid would stop her from having genetic testing. If they think their could

be a problem they should want to know so she can get all of the health test done

that come along with mds or any chromosome disorder, one would think. If she

does have mds she would have to have all of the same test that a child with ds

gets, like heart, thyroid, eyes etc. Although the more and more I see what the

system does it would not surprise me if they did not want to do the testing. I

think I would just insist. She should also qualify for early intervention which

is a huge help. She sounds adorable how long will it be before the adoption goes

through?

Sue

Isabella mds 15 months

Hi from the " New Family "

Sorry it's taken me so long to come say HI, but life has been

hectic. My daughters GI doctor thinks she may have Mosaic Down's.

We didn't speak to him directly about it, but got the news from our

pediatrician. I'll give you all the info I can and see what you all

think.

Little One (sorry I can't post a name until she's adopted) was born 2

months premature to a mom who had no prenatal care and tested

positive for drugs. She had a traumatic birth (had to be

resusitated) and began having seizures immediately. Anyway, since

then she's had multiple health issues. She aspirates and has GERD.

She got a feeding tube at 9 months old which has helped alot. She

has lots of issues with diarrhea and constipation. They say she has

malabsorption and a milk protein intolerance. She's teeny tiny. At

nearly 18 months she weighs about 19 lbs and is about 27 inches

tall. Her feet are very little. She still wears size 1.

She is hearing impaired and wears hearing aides. She seems to have a

chronic cold and just got tubes in a few weeks ago. She does not

speak any words yet, but knows about 7 signs.

The one thing that the GI doc mentioned on the last visit is that her

hair is thin?

Anyway, that's probably more than everyone wanted to know. But if

anyone has any insight, please share. We are going to ask for

genetic testing, but we know it will be a long wait for that since

she's still a foster child and on medicaid.

Thanks!

__________________________________________________________

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals.yahoo.com/tc/blockbuster/text5.com

[Guest guest]

Thankfully she's had ECI since she was about 8 weeks old. We also have extra

therapy with PT and OT about 3 hours a week. She also has a deaf ed teacher

visit for 1 hour a week. I know this has helped her a great deal.

Thanks for the info on the book!

marriah buhman wrote:

Hi , yes I agree with Sue, you should insist on genetic testing

becuase wether its mds or ds there could be other factors. Ive heard of people

finding out other chromosome disorders along with ds but also you need a

diagnosis so you can get her into early intervention. Early intervention has

helped my 10 month old son tremendously and they need to have that diagnosis

paper work, plus you should get social security and other benefits for her so

she can have the BEST medical care posible. I am excited for you and Im sure she

will bring a lot of joy into your life. She sounds like a strong little girl!

There is a book called, " Babies with Down Syndrome, a new parents guide, second

edition. " I highly reccomend this book to new parents like us, it is very

informative not only on the health issues but also on the legal issues and

resources available. Congratulations on the new addition to your family and I

will pray for you all.

Marriah mom of Gideon, 10 months old

Sue wrote:

I am so glad this little one has found you. I do not understand why her being in

foster care and on medicaid would stop her from having genetic testing. If they

think their could be a problem they should want to know so she can get all of

the health test done that come along with mds or any chromosome disorder, one

would think. If she does have mds she would have to have all of the same test

that a child with ds gets, like heart, thyroid, eyes etc. Although the more and

more I see what the system does it would not surprise me if they did not want to

do the testing. I think I would just insist. She should also qualify for early

intervention which is a huge help. She sounds adorable how long will it be

before the adoption goes through?

Sue

Isabella mds 15 months

Hi from the " New Family "

Sorry it's taken me so long to come say HI, but life has been

hectic. My daughters GI doctor thinks she may have Mosaic Down's.

We didn't speak to him directly about it, but got the news from our

pediatrician. I'll give you all the info I can and see what you all

think.

Little One (sorry I can't post a name until she's adopted) was born 2

months premature to a mom who had no prenatal care and tested

positive for drugs. She had a traumatic birth (had to be

resusitated) and began having seizures immediately. Anyway, since

then she's had multiple health issues. She aspirates and has GERD.

She got a feeding tube at 9 months old which has helped alot. She

has lots of issues with diarrhea and constipation. They say she has

malabsorption and a milk protein intolerance. She's teeny tiny. At

nearly 18 months she weighs about 19 lbs and is about 27 inches

tall. Her feet are very little. She still wears size 1.

She is hearing impaired and wears hearing aides. She seems to have a

chronic cold and just got tubes in a few weeks ago. She does not

speak any words yet, but knows about 7 signs.

The one thing that the GI doc mentioned on the last visit is that her

hair is thin?

Anyway, that's probably more than everyone wanted to know. But if

anyone has any insight, please share. We are going to ask for

genetic testing, but we know it will be a long wait for that since

she's still a foster child and on medicaid.

Thanks!

__________________________________________________________

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals.yahoo.com/tc/blockbuster/text5.com

[Guest guest]

I agree that all the symptoms could be because of her birth or drugs. Maybe

it's the whole not growing thing. I'm not really sure. I'm not sure what the

deal is with the thin hair either, but I remember him mentioning it when he was

inspecting her. She does have something a little different with her eyes

because everyone who sees her believes she's Asian when she's really hispanic.

But I thought that might have something to do with drugs or alcohol as well. I

guess we'll just have to wait and see.

Kristy Colvin wrote: Hi

Do you know why the GI doctor thinks she has MDS? Does she have physical

characteristics that make the doctor think this? All the other problems she is

having could be because of the prematurity and drug abuse, but then they could

lean towards MDS also. I am not sure about the thin hair but if she has bald

patches it could be Alopecia Areata. Here is a link for that

http://www.ds-health.com/derm.htm

Is there any way around the genetic test wait? How soon will her adoption be

complete? My suggestion is, if you have to wait for the test and the doctor

really thinks she has MDS, then to just treat her as such. This mainly means

that she would need the health checks that are outlined for Down syndrome and to

continue with her therapy for speech and motor skills.

Welcome to our family!

Kristy

Mom to Arron 26, 23, Tim 21, Stevan 20, and Garrett 11

lazshay wrote:

Sorry it's taken me so long to come say HI, but life has been

hectic. My daughters GI doctor thinks she may have Mosaic Down's.

We didn't speak to him directly about it, but got the news from our

pediatrician. I'll give you all the info I can and see what you all

think.

Little One (sorry I can't post a name until she's adopted) was born 2

months premature to a mom who had no prenatal care and tested

positive for drugs. She had a traumatic birth (had to be

resusitated) and began having seizures immediately. Anyway, since

then she's had multiple health issues. She aspirates and has GERD.

She got a feeding tube at 9 months old which has helped alot. She

has lots of issues with diarrhea and constipation. They say she has

malabsorption and a milk protein intolerance. She's teeny tiny. At

nearly 18 months she weighs about 19 lbs and is about 27 inches

tall. Her feet are very little. She still wears size 1.

She is hearing impaired and wears hearing aides. She seems to have a

chronic cold and just got tubes in a few weeks ago. She does not

speak any words yet, but knows about 7 signs.

The one thing that the GI doc mentioned on the last visit is that her

hair is thin?

Anyway, that's probably more than everyone wanted to know. But if

anyone has any insight, please share. We are going to ask for

genetic testing, but we know it will be a long wait for that since

she's still a foster child and on medicaid.

Thanks!

Kristy Colvin

IMDSA President

____________________________________________________

International Mosaic Down Syndrome Association

PH: 1-

Toll Free: 1-888-MDS-LINK

www.imdsa.com

[Guest guest]

FAS (Fetal Alcohol Syndrome) can present with some different

features.

<br>

low birth weight

<br>

small head circumference

<br>

failure to thrive

<br>

developmental delay

<br>

organ dysfunction

<br>

facial abnormalities, including smaller eye openings, flattened

cheekbones, and indistinct philtrum (an underdeveloped groove

between the nose and the upper lip)

<br>

epilepsy

<br>

poor coordination/fine motor skills

<br>

poor socialization skills, such as difficulty building and

maintaining friendships and relating to groups

<br>

lack of imagination or curiosity

<br>

learning difficulties, including poor memory, inability to

understand concepts such as time and money, poor language

comprehension, poor problem-solving skills

<br>

behavioral problems, including hyperactivity, inability to

concentrate, social withdrawal, stubbornness, impulsiveness, and <br>

anxiety

<br>

I got these symptoms from this website:

http://kidshealth.org/parent/medical/brain/fas.html

<br>

<br>

> Sorry it's taken me so long to come say HI, but life has been

> hectic. My daughters GI doctor thinks she may have Mosaic Down's.

> We didn't speak to him directly about it, but got the news from

our

> pediatrician. I'll give you all the info I can and see what you

all

> think.

>

> Little One (sorry I can't post a name until she's adopted) was

born 2

> months premature to a mom who had no prenatal care and tested

> positive for drugs. She had a traumatic birth (had to be

> resusitated) and began having seizures immediately. Anyway, since

> then she's had multiple health issues. She aspirates and has GERD.

> She got a feeding tube at 9 months old which has helped alot. She

> has lots of issues with diarrhea and constipation. They say she

has

> malabsorption and a milk protein intolerance. She's teeny tiny. At

> nearly 18 months she weighs about 19 lbs and is about 27 inches

> tall. Her feet are very little. She still wears size 1.

>

> She is hearing impaired and wears hearing aides. She seems to have

a

> chronic cold and just got tubes in a few weeks ago. She does not

> speak any words yet, but knows about 7 signs.

>

> The one thing that the GI doc mentioned on the last visit is that

her

> hair is thin?

>

> Anyway, that's probably more than everyone wanted to know. But if

> anyone has any insight, please share. We are going to ask for

> genetic testing, but we know it will be a long wait for that since

> she's still a foster child and on medicaid.

>

> Thanks!

>

>

> Kristy Colvin

> IMDSA President

> ____________________________________________________

> International Mosaic Down Syndrome Association

> PH: 1-

> Toll Free: 1-888-MDS-LINK

> www.imdsa.com

>

>

[Guest guest]

Have you checked her hands? Does she have one or two creases when you cup them?

Children with ds usually only have one. My daughter has one hand that has one

crease and the other has two creases. What is her head size on the charts? My

daughter is in the 25th percentile on length and weight but only between 5 - 10%

on her head circumference. Her head size and her one eye is what brought my

attention to the fact something could be wrong? I honestly would have never

thought anything about the one palmer crease on only one hand because my nephew

has one hand with one palmer crease. He is also part Hispanic and has Asian

eyes and he is certainly not mds or ds nor did his parents do drugs. I guess it

is just the shape of his eyes. He also did not speak until he was almost 3

years old after hearing and other test it was discovered he was actually tongue

tied. There really could be many reasons as you said for her delay in growth, I

would just want

to get to the bottom of it. I am saying a prayer for you that nothing is

seriously wrong with your precious little one. Keep us posted

Sue

Isabella mds 15 months

Re: Hi from the " New Family "

I agree that all the symptoms could be because of her birth or drugs. Maybe it's

the whole not growing thing. I'm not really sure. I'm not sure what the deal is

with the thin hair either, but I remember him mentioning it when he was

inspecting her. She does have something a little different with her eyes because

everyone who sees her believes she's Asian when she's really hispanic. But I

thought that might have something to do with drugs or alcohol as well. I guess

we'll just have to wait and see.

Kristy Colvin <imdsapresident@ imdsa.com> wrote: Hi

Do you know why the GI doctor thinks she has MDS? Does she have physical

characteristics that make the doctor think this? All the other problems she is

having could be because of the prematurity and drug abuse, but then they could

lean towards MDS also. I am not sure about the thin hair but if she has bald

patches it could be Alopecia Areata. Here is a link for that http://www.ds-

health.com/ derm.htm

Is there any way around the genetic test wait? How soon will her adoption be

complete? My suggestion is, if you have to wait for the test and the doctor

really thinks she has MDS, then to just treat her as such. This mainly means

that she would need the health checks that are outlined for Down syndrome and to

continue with her therapy for speech and motor skills.

Welcome to our family!

Kristy

Mom to Arron 26, 23, Tim 21, Stevan 20, and Garrett 11

lazshay <lazshayyahoo (DOT) com> wrote:

Sorry it's taken me so long to come say HI, but life has been

hectic. My daughters GI doctor thinks she may have Mosaic Down's.

We didn't speak to him directly about it, but got the news from our

pediatrician. I'll give you all the info I can and see what you all

think.

Little One (sorry I can't post a name until she's adopted) was born 2

months premature to a mom who had no prenatal care and tested

positive for drugs. She had a traumatic birth (had to be

resusitated) and began having seizures immediately. Anyway, since

then she's had multiple health issues. She aspirates and has GERD.

She got a feeding tube at 9 months old which has helped alot. She

has lots of issues with diarrhea and constipation. They say she has

malabsorption and a milk protein intolerance. She's teeny tiny. At

nearly 18 months she weighs about 19 lbs and is about 27 inches

tall. Her feet are very little. She still wears size 1.

She is hearing impaired and wears hearing aides. She seems to have a

chronic cold and just got tubes in a few weeks ago. She does not

speak any words yet, but knows about 7 signs.

The one thing that the GI doc mentioned on the last visit is that her

hair is thin?

Anyway, that's probably more than everyone wanted to know. But if

anyone has any insight, please share. We are going to ask for

genetic testing, but we know it will be a long wait for that since

she's still a foster child and on medicaid.

Thanks!

Kristy Colvin

IMDSA President

____________ _________ _________ _________ _________ ____

International Mosaic Down Syndrome Association

PH: 1-

Toll Free: 1-888-MDS-LINK

www.imdsa.com

[Guest guest]

You can also have perfectly typical looking dermatoglyphics (palm

lines) and still have MDS. You might also see a Sydney Line, which

is similar to a Simian Crease, except that there is a straight line

from one edge of hand to the other and also a typical line above it.

Thus, there would be the typical three lines on the hand.

Not all children with DS have Simian Creases.

<br>

<br>

> Sorry it's taken me so long to come say HI, but life has been

> hectic. My daughters GI doctor thinks she may have Mosaic Down's.

> We didn't speak to him directly about it, but got the news from

our

> pediatrician. I'll give you all the info I can and see what you

all

> think.

>

> Little One (sorry I can't post a name until she's adopted) was

born 2

> months premature to a mom who had no prenatal care and tested

> positive for drugs. She had a traumatic birth (had to be

> resusitated) and began having seizures immediately. Anyway, since

> then she's had multiple health issues. She aspirates and has GERD.

> She got a feeding tube at 9 months old which has helped alot. She

> has lots of issues with diarrhea and constipation. They say she

has

> malabsorption and a milk protein intolerance. She's teeny tiny. At

> nearly 18 months she weighs about 19 lbs and is about 27 inches

> tall. Her feet are very little. She still wears size 1.

>

> She is hearing impaired and wears hearing aides. She seems to have

a

> chronic cold and just got tubes in a few weeks ago. She does not

> speak any words yet, but knows about 7 signs.

>

> The one thing that the GI doc mentioned on the last visit is that

her

> hair is thin?

>

> Anyway, that's probably more than everyone wanted to know. But if

> anyone has any insight, please share. We are going to ask for

> genetic testing, but we know it will be a long wait for that since

> she's still a foster child and on medicaid.

>

> Thanks!

>

>

> Kristy Colvin

> IMDSA President

> ____________ _________ _________ _________ _________ ____

> International Mosaic Down Syndrome Association

> PH: 1-

> Toll Free: 1-888-MDS-LINK

> www.imdsa.com

>

>

[Guest guest]

My daugther does not have the creases.

Re: Hi from the " New Family "

You can also have perfectly typical looking dermatoglyphics (palm

lines) and still have MDS. You might also see a Sydney Line, which

is similar to a Simian Crease, except that there is a straight line

from one edge of hand to the other and also a typical line above it.

Thus, there would be the typical three lines on the hand.

Not all children with DS have Simian Creases.

<br>

<br>

> Sorry it's taken me so long to come say HI, but life has been

> hectic. My daughters GI doctor thinks she may have Mosaic Down's.

> We didn't speak to him directly about it, but got the news from

our

> pediatrician. I'll give you all the info I can and see what you

all

> think.

>

> Little One (sorry I can't post a name until she's adopted) was

born 2

> months premature to a mom who had no prenatal care and tested

> positive for drugs. She had a traumatic birth (had to be

> resusitated) and began having seizures immediately. Anyway, since

> then she's had multiple health issues. She aspirates and has GERD.

> She got a feeding tube at 9 months old which has helped alot. She

> has lots of issues with diarrhea and constipation. They say she

has

> malabsorption and a milk protein intolerance. She's teeny tiny. At

> nearly 18 months she weighs about 19 lbs and is about 27 inches

> tall. Her feet are very little. She still wears size 1.

>

> She is hearing impaired and wears hearing aides. She seems to have

a

> chronic cold and just got tubes in a few weeks ago. She does not

> speak any words yet, but knows about 7 signs.

>

> The one thing that the GI doc mentioned on the last visit is that

her

> hair is thin?

>

> Anyway, that's probably more than everyone wanted to know. But if

> anyone has any insight, please share. We are going to ask for

> genetic testing, but we know it will be a long wait for that since

> she's still a foster child and on medicaid.

>

> Thanks!

>

>

> Kristy Colvin

> IMDSA President

> ____________ _________ _________ _________ _________ ____

> International Mosaic Down Syndrome Association

> PH: 1-

> Toll Free: 1-888-MDS-LINK

> www.imdsa.com

>

>

[Guest guest]

My two boys don't, two of my girls do (Sydney's), one girl did (and

it changed). Dermatoglyphics change with age.

<br>

<br>

> > Sorry it's taken me so long to come say HI, but life has been

> > hectic. My daughters GI doctor thinks she may have Mosaic

Down's.

> > We didn't speak to him directly about it, but got the news

from

> our

> > pediatrician. I'll give you all the info I can and see what

you

> all

> > think.

> >

> > Little One (sorry I can't post a name until she's adopted) was

> born 2

> > months premature to a mom who had no prenatal care and tested

> > positive for drugs. She had a traumatic birth (had to be

> > resusitated) and began having seizures immediately. Anyway,

since

> > then she's had multiple health issues. She aspirates and has

GERD.

> > She got a feeding tube at 9 months old which has helped alot.

She

> > has lots of issues with diarrhea and constipation. They say

she

> has

> > malabsorption and a milk protein intolerance. She's teeny

tiny. At

> > nearly 18 months she weighs about 19 lbs and is about 27

inches

> > tall. Her feet are very little. She still wears size 1.

> >

> > She is hearing impaired and wears hearing aides. She seems to

have

> a

> > chronic cold and just got tubes in a few weeks ago. She does

not

> > speak any words yet, but knows about 7 signs.

> >

> > The one thing that the GI doc mentioned on the last visit is

that

> her

> > hair is thin?

> >

> > Anyway, that's probably more than everyone wanted to know. But

if

> > anyone has any insight, please share. We are going to ask for

> > genetic testing, but we know it will be a long wait for that

since

> > she's still a foster child and on medicaid.

> >

> > Thanks!

> >

> >

> > Kristy Colvin

> > IMDSA President

> > ____________ _________ _________ _________ _________ ____

> > International Mosaic Down Syndrome Association

> > PH: 1-

> > Toll Free: 1-888-MDS-LINK

> > www.imdsa.com

> >

> >

[Guest guest]

Oh at the ds clinic they made it sound like all children with ds have one palmer

crease on both hands. That if they only have one on one hand that is not a sign

because 3% of the typical population have just one crease on one hand, but that

two is a sign of ds. They said with one hand having one crease they would still

look into mds because the percentage of typical people with only one crease is

very low. I just get so many different things from so many doctors you just

don't know what to believe.

Sue

Re: Hi from the " New Family "

My two boys don't, two of my girls do (Sydney's), one girl did (and

it changed). Dermatoglyphics change with age.

<br>

<br>

> > Sorry it's taken me so long to come say HI, but life has been

> > hectic. My daughters GI doctor thinks she may have Mosaic

Down's.

> > We didn't speak to him directly about it, but got the news

from

> our

> > pediatrician. I'll give you all the info I can and see what

you

> all

> > think.

> >

> > Little One (sorry I can't post a name until she's adopted) was

> born 2

> > months premature to a mom who had no prenatal care and tested

> > positive for drugs. She had a traumatic birth (had to be

> > resusitated) and began having seizures immediately. Anyway,

since

> > then she's had multiple health issues. She aspirates and has

GERD.

> > She got a feeding tube at 9 months old which has helped alot.

She

> > has lots of issues with diarrhea and constipation. They say

she

> has

> > malabsorption and a milk protein intolerance. She's teeny

tiny. At

> > nearly 18 months she weighs about 19 lbs and is about 27

inches

> > tall. Her feet are very little. She still wears size 1.

> >

> > She is hearing impaired and wears hearing aides. She seems to

have

> a

> > chronic cold and just got tubes in a few weeks ago. She does

not

> > speak any words yet, but knows about 7 signs.

> >

> > The one thing that the GI doc mentioned on the last visit is

that

> her

> > hair is thin?

> >

> > Anyway, that's probably more than everyone wanted to know. But

if

> > anyone has any insight, please share. We are going to ask for

> > genetic testing, but we know it will be a long wait for that

since

> > she's still a foster child and on medicaid.

> >

> > Thanks!

> >

> >

> > Kristy Colvin

> > IMDSA President

> > ____________ _________ _________ _________ _________ ____

> > International Mosaic Down Syndrome Association

> > PH: 1-

> > Toll Free: 1-888-MDS-LINK

> > www.imdsa.com

> >

> >