Welcome new member

[Guest guest]

We have another new member and here is what she had to say...

I have a 11 week old son named Charlie who is MDS. I would like to

connect with others who can relate to me to not only find out more about

MDS but for support. Teagan Drayton

Love the name Charlie. Can you tell us more about yourself, such as where you

live? Feel free to ask any questions you might have. The group is a great help

and you will learn lots.

My name is and I have 4 kids. The youngest 2 are special needs and my

youngest is 3 1/2 yrs old and is diagnosed Ds.

[Guest guest]

Welcome! We are here to help provide you support and information along your

journey. An Interphase FISH test looking at 500 cells (minimum) is what you need

to have done on your child. It is a simple blood test, but you need to make sure

the script and lab orders specifically say *500* or they will do *20*

(standard), which leaves a lot of room for error.

How is your child developing and meeting the milestones?

>

> Hi everyone,

>

> We have a new member so please welcome her to our group. Here is what she had

to say.

>

> Comment from user:

> I am a mom of 2 beautiful children, one of whom is suspected to have

> mds, he had a full micro array test done last year but it didn't check

> mosaic or translocation cells so we are continuing to test.

>

>

>

> Hi, My name is and I mom to 4 beautiful kids and grandma to 2! My 2

youngest are both special needs and the youngest age 3 was diagnosed DS but we

still question that. Can you tell us a little more about yourself, such as your

name and your childrens names? How many cells were tested and why is MDS

suspected?

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[Guest guest]

Hello and thank you for letting me join,

I believe 40 cells where tested when my son was 3 1/2 months old, he is

currently 14 months. A small dup was found on the 18th chromosome but I have the

same thing and the drs stated they didn't feel that it would cause all of the

issues my son has had. The lab notes that the test did not check for mosaic or

translocations at all, and the minimum number of cells to be counted looked 70%

the same.

From birth I thought something was " different. " The nurses seemed highly worried

about him right from the start and 3 noticed and commented on how short his

umbilical cord was (around 1 foot only). From that time he nursed poorly, and on

day 5 I took him to see a lactation consultant who informed me his suck was less

than a premies, we where not sure why but she also heard a heart murmur. It was

confirmed that day that my son had a small ASD and very large (1cm) VSD right at

the aortic opening (actually was sucking in the valve). He was hosptialized that

night due to high bilirubin levels, dehydration from not eating well. It was

noted while he was in the hosptial that he had an unsually high red blood cell

count that confused all the doctors.

At 3 1/2 months he had his heart fixed through open heart surgery. We had an

EEG done and MRI just before surgery and both came back normal less some

flattening of the head shape. It was also noticed by many doctors that he seemed

to have eye problems, he will be just now getting glasses, has slight nstagmus

(ticking), and an intermittened strabismus in the right eye. He passed his

second audio test at 2 months but the testing gal stated it was odd because one

year cleared before the other and usually both come back at the same time.

His physical therapist doesn't understand his neck but states that they is

something " different " but can not explain it (I'm wondering if it is

Atalantoxial instability in between the 1st/2nd vertebrae.) His early

intervention teacher doesn't understand why he has such low muscle tone. He has

severe constipation as well, and has an overall " happy " disposition.

He is around 7 months for most things (he's 14) he can sit but only if we place

him there, just now starts to self-feed, can not pull to stand or even crawl. So

he is globally delayed.

He is currently receiving PT every other week and EI once a week, we are adding

OT within the next month weekly.

Here are some pictures of him if you are interested in seeing him

pbckt.com/sx.14Q

He is a wonderful little boy but certainly puzzling to many!

Thanks for letting me join,

>

> Hi everyone,

>

> We have a new member so please welcome her to our group. Here is what she had

to say.

>

> Comment from user:

> I am a mom of 2 beautiful children, one of whom is suspected to have

> mds, he had a full micro array test done last year but it didn't check

> mosaic or translocation cells so we are continuing to test.

>

>

>

> Hi, My name is and I mom to 4 beautiful kids and grandma to 2! My 2

youngest are both special needs and the youngest age 3 was diagnosed DS but we

still question that. Can you tell us a little more about yourself, such as your

name and your childrens names? How many cells were tested and why is MDS

suspected?

>

>

>

>

>

>

>

[Guest guest]

Welcome Sue and Jerry

My name is Carol and I to am a Grandparent to a MDS baby, its good to have

another Grandparent on here, I am Nanny to Olivia, Tacia's little lovely.

We live in the UK so are very long distance Grandparents but we try to support

them as best we can.

Carol and Missy

X X X

Subject: RE: Welcome New Member

To: MosaicDS

Date: Saturday, 18 September, 2010, 16:32

 

Hi everyone…we are Jerry and Sue Wiebe (Jen’s folks) and her little

boy with MDS is Ethan Bollenbach, but we all just call him ‘E!’ We

requested to join your group to learn as much as we can of real world

experiences for this very uncommon syndrome, and find ways we can, as

grandparents, participate in and encourage his development. Thank you for

letting us join.

Jer n Sue

Date: September 17, 2010 1:36:42 PM PDT

To: imdsa <mosaicds >

Subject: Welcome New Member

Reply-To: MosaicDS

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

say....

My grandson has MDS and my daughter belongs to this group. We'd like

join too.

Welcome to the egroup! Please tell us your name and your grandson's name?

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 have a son 14 with mds and am in sydney, narellan actually

Sent from my iPhone

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> Hi , How are you connected to this group? are you in Sydney too?

> Michele

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