Welcome new family!

[Guest guest]

Hello to the new family!

My name is Casey Morton, and welcome to our support group. There are a lot of

parents and people here, please dont hesitate to ask any of us about mosaic Down

syndrome, and or Down syndrome. We all can relate in someway, and are all here

to help, I myself have Mosaic Downs, so welcome!!

Casey T. Morton

IMDSA NewsLetter Editor

Subject: welcome new family!

To: " imdsa " <mosaicds >

Date: Monday, January 4, 2010, 5:15 PM

 

Hi everyone! We have a new family joining us today! Here is what she had

to say...

I Suspect my 6 month old daughter has MDS. She many features of DS, except

her

muscle tone is excellent. I am SO confused and looking for more

info.Thank you

Welcome to the group! What is your, and your daughter's name? When they tested

her cells how many did they test, and what were the results? Sometimes they only

test 20 cells.

Please feel free to ask any questions that you may have.  Hopefully someone can

answer some of your questions that you may have? I'm sure that you will find

this group very helpful, and supportive!

Hellard ~ mom to Adde almost 3!

brandyimdsa (DOT) org

[Guest guest]

Hello,

Oana is my daughter. Is 30 years. Is MDS. Open heart surgery was the hardest.

Hope is in the future. Please See This Video

Floreta

>

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

say...

>

> My daughter was diagnosed with MDS at birth in 2003. She met every

> milestone.

> We started seeing slight problems in Kindergarten. We don't

> know enough

> about what to expect from MDS in the coming years.

>

> Welcome to our group! Please tell us more about you and your daughter. What

are your names? What are the slight problems that she is having? Does the school

know that she has mDs? Did she ever received services like..OT, PT, or speech? 

>

> Just know that you are not alone, there are a lot of great people on this

e-group that will be here to give you great advice, and support.

>

> Hellard

>

> IMDSA President

>

> brandy@...

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> International Mosaic Down Syndrome Association

>

> PH:

>

> Toll Free: 1-888-MDS-LINK

>

> http://www.imdsa.org

>

>

>

>

>

[Guest guest]

Hello group-

Our names are Mitch and Missy and our daughter is Lainy. She is 7

years old and in 1st grade. She was diagnosed with Mosaic Trisomy 21

at birth with a kareotype test and showed 1-2% of her cells with

Trisomy. She is having some challenges in school with reading and has

been since Kindergarten. The consistent feedback that we have

received from her teachers is that she is easily distracted, has

trouble focusing and doesn't finish her work in class. Further,

conversations with her tend to be one way, e.g., she'll make a

statement and then check out of the conversation after that. We have

been to get her evaluated in her pre school hears for speech, etc and

they had felt she wasn't showing a big enough deficit to warrant state

funded help at the time. The school doesn't officially know about her

diagnosis but we've recently mentioned it to her teacher. It has

since been suggested that we get it on record so that she can get the

help she needs. We are completely in the dark about what to expect

next. The Drs have always told us that she may be met with challenges

in school and we're seeing that now. Just don't know where the road

leads after this. Anyone in a similar situation as us?

-Thanks! M & M

> Hi everyone! We have a new family joining us today. Her is what she

> had to say...

>

> My daughter was diagnosed with MDS at birth in 2003. She met every

> milestone.

> We started seeing slight problems in Kindergarten. We don't

> know enough

> about what to expect from MDS in the coming years.

>

> Welcome to our group! Please tell us more about you and your

> daughter. What are your names? What are the slight problems that she

> is having? Does the school know that she has mDs? Did she ever

> received services like..OT, PT, or speech?

>

> Just know that you are not alone, there are a lot of great people on

> this e-group that will be here to give you great advice, and support.

>

> Hellard

>

> IMDSA President

>

> brandy@...

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> International Mosaic Down Syndrome Association

>

> PH:

>

> Toll Free: 1-888-MDS-LINK

>

> http://www.imdsa.org

>

>

[Guest guest]

Thanks for welcoming us. My name is Judy, husband is Grantland and my daughter's

name is Grace. We live in Connecticut. Grace was diagnosed at 18 months. We

consider her very high functioning but there are some areas of concern. She

loves to dance, writes imaginative stories, is a great reader however

inferencing and complex subjects are struggles for her. She has difficulty

connecting with others her age and prefers to play with younger kids. Last year

we switched school because of teasing. She is doing much better in the larger

school with more kids with differences. She is involved in a social skills group

for kids on the spectrum. Not a perfect fit in facet she seems to be the peer

model of the group, but she is a unique case. In so many ways she is

typical-talks about her crushes, being a fashion designer or rock star. We, of

course, worry about the future and if she will plateau. We would also love her

to have a good friend to play barbies with.

[Guest guest]

Hi everyone! We have a new family joining today! Here is what they had to say...

Just recently heard about this condition through my employer. I am

interested in learning about the causes.

Welcome, please tell us more about you. What is your name? How did your work

know about us?

Please feel free to ask any questions that you may have.

Hellard

IMDSA President

brandy@...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

[Guest guest]

Hi ,

I can completely relate to your story about finding out about your son, since

that was VERY similar to that of my daughter. My Mom was the one who diagnosed

him (she knew of MDS) and then I had to convince the Dr. to do the test. They

reluctantly agreed and it took 2 weeks to get the results (they have to watch

the cells divide and document it). There are several types of tesst (the FSH

test is much faster - 3 days I believe for a result). It is not the best test

for MDS since it doesn't give the detail in the results (%s of T21 cells) that

the other 2 tests do. It sounds like the tests were already completed so the

longest you should wait is 2 weeks. Don't leave it longer than that (I followed

up at one week then two weeks then every couple of days) since they forget to

give you results.

My daughter looked a little different (we affectionately called her our 'little

alien' since she had very big eyes) and it wasn't until about 5 months that we

could see the DS traits. Strangely, she seems to have changed again (she is now

2) and it is not noticeable. When she is tired, we can slightly see the traits,

but otherwise no one has ever mentioned anything...except my Mom. My daughter

has no other physical traits of DS but we do all that we can to give her the

most help and expose her to as much possible to give her a head start. I do

believe that you treat your child like any other child (we do all that we can to

help them succeed), it just doesn't come quite as easily to my daughter compared

with my older daughter.

Hang in there. The diagnosis time is difficult. We 'mourned' for the little

girl that we thought was perfect, but now that she is almost 2 (we found out at

6 mos), I can tell you that you start to realize that you can put a label on a

condition that your child has, but your child is still the person that you

thought they were the day before the diagnosis. Life will again become routine

(assuming your child even has MDS, as may not) and all of the things you worry

about will just turn into actions you put in place to help both your children

learn. My older daughter is a better person for it since she is part of the

'teaching' process as well. She doesn't know that there is anything different

about her sister and I am not sure that I will ever proactively tell her (if she

asks, I will certainly tell her the truth). My daugther with MDS is starting at

a regular preschool in 2 weeks and we (including the teachers) think she will do

great.

Do your research, get the results and if its MDS, deal with the emotions as much

as you need to. Your mind will go through all sorts of things and all of those

things are normal. I am not a cryer (at all!) but this subject can reduce me to

tears fairly easily. You have a family with this group that will cry and

rejoice with you. Use it and contribute when you're ready but be sure to keep

an eye out for the all tips and ideas from the members - they all do so much for

their kids.

Best of luck to you - it will be OK no matter what the result!!

Allysa

Welcome New Family!

Hi everyone! We have a new family joining us today, here is what they had to

say...

My name is and I have a one year old with mosaic down

syndrome. Would like a chance to contact others who are experiencing

this.

Welcome ! Please tell us more about you and your one year old! What is

your child's name? Where are you from? I'm sure you will find this group to be

very supportive and helpful!

Hellard

President

International Mosaic Down syndrome Association (IMDSA)

P.0. Box 354~ Trenton ~ OH ~ 45067

1-888-MDS-LINK ~ 1- ~ (FAX) 1-

http://imdsa.org

Come Join us in Orlando, FL. during July 8-10th at our Research and Awareness

Conference!

http://imdsa.org/overview

[Guest guest]

That is hilarious that you called her your " little alien " , since that is exactly

what my husband has called Caede from day one! For the first couple of months he

had a big head, big blue eyes, and a little skinny body. Now he is slightly more

proportional at 23 pounds! We know that there is definitely something going on

with him, and the genetics people at our childrens hospital are pretty certain

its MDS. We have pretty much accepted it already- even my husband, surprisingly,

who isn't good at accepting when things are " wrong " . I told him and he was just

kind of quiet for a minute, and he looked at Caede for awhile, then said, ok. We

are trying to handle it well, and not change the way we treat him, and we're

just waiting for more definitive news. (particularly % of trisomy 21 cells vs.

normal) Thanks so much for the support and feedback, & congrats on your little

one starting preschool! So exciting! 

________________________________

To: MosaicDS

Sent: Wednesday, May 25, 2011 4:09 PM

Subject: Re: Welcome New Family!

 

Hi ,

I can completely relate to your story about finding out about your son, since

that was VERY similar to that of my daughter. My Mom was the one who diagnosed

him (she knew of MDS) and then I had to convince the Dr. to do the test. They

reluctantly agreed and it took 2 weeks to get the results (they have to watch

the cells divide and document it). There are several types of tesst (the FSH

test is much faster - 3 days I believe for a result). It is not the best test

for MDS since it doesn't give the detail in the results (%s of T21 cells) that

the other 2 tests do. It sounds like the tests were already completed so the

longest you should wait is 2 weeks. Don't leave it longer than that (I followed

up at one week then two weeks then every couple of days) since they forget to

give you results.

My daughter looked a little different (we affectionately called her our 'little

alien' since she had very big eyes) and it wasn't until about 5 months that we

could see the DS traits. Strangely, she seems to have changed again (she is now

2) and it is not noticeable. When she is tired, we can slightly see the traits,

but otherwise no one has ever mentioned anything...except my Mom. My daughter

has no other physical traits of DS but we do all that we can to give her the

most help and expose her to as much possible to give her a head start. I do

believe that you treat your child like any other child (we do all that we can to

help them succeed), it just doesn't come quite as easily to my daughter compared

with my older daughter.

Hang in there. The diagnosis time is difficult. We 'mourned' for the little

girl that we thought was perfect, but now that she is almost 2 (we found out at

6 mos), I can tell you that you start to realize that you can put a label on a

condition that your child has, but your child is still the person that you

thought they were the day before the diagnosis. Life will again become routine

(assuming your child even has MDS, as may not) and all of the things you worry

about will just turn into actions you put in place to help both your children

learn. My older daughter is a better person for it since she is part of the

'teaching' process as well. She doesn't know that there is anything different

about her sister and I am not sure that I will ever proactively tell her (if she

asks, I will certainly tell her the truth). My daugther with MDS is starting at

a regular preschool in 2 weeks and we (including the teachers) think she will do

great.

Do your research, get the results and if its MDS, deal with the emotions as much

as you need to. Your mind will go through all sorts of things and all of those

things are normal. I am not a cryer (at all!) but this subject can reduce me to

tears fairly easily. You have a family with this group that will cry and

rejoice with you. Use it and contribute when you're ready but be sure to keep

an eye out for the all tips and ideas from the members - they all do so much for

their kids.

Best of luck to you - it will be OK no matter what the result!!

Allysa 

[Guest guest]

Hi ,

It is really strange - my husband immediately accepted it as well and never

looked back. I was worried how he would respond since some husbands don't

handle these types of situations well or harbor anger/guilt. He told me that

she was his little girl and he would treat her exactly the same until he saw a

need to change. He has been true to his word and treats her exactly the same as

my older daughter (except for the year and a half difference in their ages). I

am the one who 'watches' for anything which may need more work, meets with the

ECI team, is involved with our local DS organization and takes her to places

like 'My Gym' to help strengthen her muscles, etc. The funny thing is that I

didn't tell the people at My Gym anything about her and they actually moved her

up to the next class 4 months early because they thought she was ready. They

expect more of her because they don't know any differently. I take such pride

when strangers observe her and happen to mention that her speech is good or that

she is smart (when she is counting or reciting 'three little pigs'). We get such

joy from her successes.

Once you get a result, get engaged with your local Early Childhood Intervention

team and get a good pediatrician (if you don't have one already). If your son

does have MDS, you will want to treat him like he is full DS and have all the

testing completed. ECI will help you with your local resources, provide your

therapy (OT, PT, Speech and cognitive). Try to get to them ASAP so that you

can get these service started right away since you will benefit and so will your

child. Your local Down Syndrome association may also offer free classes like

Gymboree, music classes, signing classes (for you and your child), swimming

classes and I would encourage you to utilize any resources you think would help

Caede.

You sound very positive for going through this testing but it sounds like you

have already been through a lot. You are probably in a much better position to

deal with the news, no matter what the outcome. Strangely enough, I also thought

I was losing Lexie during my pregnancy.

Just as an aside, we received the results on the blood tests and made a choice

to have her skin tested as well. The difference in percentages was 40%, so the

numbers can vary drastically as well as not providing an indicator of the

severity of MDS. However, we needed as much information as possible at the time

for our own knowledge. I am not advocating one way or the other, but just

letting you know that the skin vs. muscle vs. blood %s can vary drastically and

depending on the number of cells tested, may not be very accurate. I fought

hard but could not convince my hospital to test more than 50 cells which is not

a good sample size. They are very good at being sneaky with their testing

methods, # of cells, etc. even when specifically asked. They even provide a

print out of the cells under the microscope, which you should be provided (if

not, ask!). You might also want to get a copy of his medical records as I also

found lots of notes from the Geneticist that he never told me during the

appointment. Beware,if you go to a geneticist, it really is only for the

benefit of them collecting data and will not provide much feedback (unless you

plan on having another baby). People's experiences with geneticists has been

varied in the group, but many have found it to be a one way chat with you

talking and asking questions and them not providing many answers. This may be

because there aren't many answers to provide and also because that doesn't seem

to be their role (still not completely sure what they do except collect research

on your child and tell you the basics of DS).

Wow - way too much info in one e-mail. Take what is useful and discard anything

else!

Kind Regards,

Allysa

Re: Welcome New Family!

Hi ,

I can completely relate to your story about finding out about your son, since

that was VERY similar to that of my daughter. My Mom was the one who diagnosed

him (she knew of MDS) and then I had to convince the Dr. to do the test. They

reluctantly agreed and it took 2 weeks to get the results (they have to watch

the cells divide and document it). There are several types of tesst (the FSH

test is much faster - 3 days I believe for a result). It is not the best test

for MDS since it doesn't give the detail in the results (%s of T21 cells) that

the other 2 tests do. It sounds like the tests were already completed so the

longest you should wait is 2 weeks. Don't leave it longer than that (I followed

up at one week then two weeks then every couple of days) since they forget to

give you results.

My daughter looked a little different (we affectionately called her our 'little

alien' since she had very big eyes) and it wasn't until about 5 months that we

could see the DS traits. Strangely, she seems to have changed again (she is now

2) and it is not noticeable. When she is tired, we can slightly see the traits,

but otherwise no one has ever mentioned anything...except my Mom. My daughter

has no other physical traits of DS but we do all that we can to give her the

most help and expose her to as much possible to give her a head start. I do

believe that you treat your child like any other child (we do all that we can to

help them succeed), it just doesn't come quite as easily to my daughter compared

with my older daughter.

Hang in there. The diagnosis time is difficult. We 'mourned' for the little girl

that we thought was perfect, but now that she is almost 2 (we found out at 6

mos), I can tell you that you start to realize that you can put a label on a

condition that your child has, but your child is still the person that you

thought they were the day before the diagnosis. Life will again become routine

(assuming your child even has MDS, as may not) and all of the things you worry

about will just turn into actions you put in place to help both your children

learn. My older daughter is a better person for it since she is part of the

'teaching' process as well. She doesn't know that there is anything different

about her sister and I am not sure that I will ever proactively tell her (if she

asks, I will certainly tell her the truth). My daugther with MDS is starting at

a regular preschool in 2 weeks and we (including the teachers) think she will do

great.

Do your research, get the results and if its MDS, deal with the emotions as much

as you need to. Your mind will go through all sorts of things and all of those

things are normal. I am not a cryer (at all!) but this subject can reduce me to

tears fairly easily. You have a family with this group that will cry and rejoice

with you. Use it and contribute when you're ready but be sure to keep an eye out

for the all tips and ideas from the members - they all do so much for their

kids.

Best of luck to you - it will be OK no matter what the result!!

Allysa

[Guest guest]

Hi Allysa,

That was NOT way too much information! Anything I can get is valuable. We have a

great pediatrician who had already gotten the ball rolling with early

intervention months ago, before I made any mention of DS. (Just because of the

obvious hearing loss & developmental delays) I didn't think about additional

local resources, so thanks for that info & I will be looking in to all of that.

I want to give Caede all the opportunities that I can, but I wasn't sure what

was available or where to begin looking. So again, thanks for that! And I had

read that it is best to get tests done on blood and skin cells because the

percentages can be varied, so we will mention that to the geneticist at

children's hospital when we're there. 

Its funny that you're kids are also a year and a half apart! Caede's older

sister Gracie is the polar opposite of him and pretty much does everything for

him. At first that's why we thought he wasn't talking- because all he has to do

is let out this little high pitched squeal and she will run & fetch whatever it

is that he wants. How she knows what he wants, I have no idea, but she does! 

And you also almost miscarried during your pregnancy? I'm sorry for that and

glad that your little girl made it through. In doing some of the research on

MDS, I read that an increased risk of miscarriage is common when your child has

DS. So I don't know if that had anything to do with it or not, but the genetics

people put it on Caede's " list " of MDS symptoms when I was being interviewed.

And I guess that's why this whole process isn't freaking me out as much as

everybody seems to think it should. Of course, I want him to have the best life

possible and be as " normal " as possible. But I'm just so glad to have him HERE

after fighting so hard during the pregnancy to keep him from being born too

early. And especially after losing our first boy, I'm so glad to have this

beautiful boy I have now, who has blonde hair & blue eyes just like his brother.

(My daughter, adversely, looks just like her father- brown skin, brown hair,

brown eyes!) We've just been

praying about it a lot and we'll see what happens next, but no matter what the

outcome is, we're just thrilled to have two healthy & perfect kids. 

Stevie

(Caede's Mom)

________________________________

To: MosaicDS

Sent: Wednesday, May 25, 2011 5:49 PM

Subject: Re: Welcome New Family!

 

Hi ,

It is really strange - my husband immediately accepted it as well and never

looked back. I was worried how he would respond since some husbands don't

handle these types of situations well or harbor anger/guilt. He told me that

she was his little girl and he would treat her exactly the same until he saw a

need to change. He has been true to his word and treats her exactly the same as

my older daughter (except for the year and a half difference in their ages). I

am the one who 'watches' for anything which may need more work, meets with the

ECI team, is involved with our local DS organization and takes her to places

like 'My Gym' to help strengthen her muscles, etc. The funny thing is that I

didn't tell the people at My Gym anything about her and they actually moved her

up to the next class 4 months early because they thought she was ready. They

expect more of her because they don't know any differently. I take such pride

when strangers observe her

and happen to mention that her speech is good or that she is smart (when she is

counting or reciting 'three little pigs'). We get such joy from her successes.

Once you get a result, get engaged with your local Early Childhood Intervention

team and get a good pediatrician (if you don't have one already). If your son

does have MDS, you will want to treat him like he is full DS and have all the

testing completed. ECI will help you with your local resources, provide your

therapy (OT, PT, Speech and cognitive). Try to get to them ASAP so that you

can get these service started right away since you will benefit and so will your

child. Your local Down Syndrome association may also offer free classes like

Gymboree, music classes, signing classes (for you and your child), swimming

classes and I would encourage you to utilize any resources you think would help

Caede.

You sound very positive for going through this testing but it sounds like you

have already been through a lot. You are probably in a much better position to

deal with the news, no matter what the outcome. Strangely enough, I also thought

I was losing Lexie during my pregnancy.

Just as an aside, we received the results on the blood tests and made a choice

to have her skin tested as well. The difference in percentages was 40%, so the

numbers can vary drastically as well as not providing an indicator of the

severity of MDS. However, we needed as much information as possible at the time

for our own knowledge. I am not advocating one way or the other, but just

letting you know that the skin vs. muscle vs. blood %s can vary drastically and

depending on the number of cells tested, may not be very accurate. I fought

hard but could not convince my hospital to test more than 50 cells which is not

a good sample size. They are very good at being sneaky with their testing

methods, # of cells, etc. even when specifically asked. They even provide a

print out of the cells under the microscope, which you should be provided (if

not, ask!). You might also want to get a copy of his medical records as I also

found lots of notes from the

Geneticist that he never told me during the appointment. Beware,if you go to a

geneticist, it really is only for the benefit of them collecting data and will

not provide much feedback (unless you plan on having another baby). People's

experiences with geneticists has been varied in the group, but many have found

it to be a one way chat with you talking and asking questions and them not

providing many answers. This may be because there aren't many answers to provide

and also because that doesn't seem to be their role (still not completely sure

what they do except collect research on your child and tell you the basics of

DS).

Wow - way too much info in one e-mail. Take what is useful and discard anything

else!

Kind Regards,

Allysa

[Guest guest]

Welcome, Kim. I am Beth. Our daughter Gracie is 4 and has MDS. You will find a

lot of support and friendship in this group. Your little one will be a fantastic

blessing. Gracie has brought us such joy that we are hoping to adopt another

Down syndrome baby sometime soon.

We have 3 other daughters at home with different special needs, ages 13, 14, and

16.

Beth