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Re: [RE: Situation]

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That's very interesting, . In my husband's family, there have been three

people in four generations with trisomy 21. His grandmother's brother, his

uncle (her son) and aunt's pregnancy (which they did not have), and our son

. It's not translocation, just trisomy 21. I think there must be some

connection, but the doctors tell me it's just coincidence and everything I've

read says the same. Maybe they'll discover some connection in future research.

(mom of (DS) and )

Very interesting . Are you in contact with these families?

Re: Situation

From: " " <lauranra@...>

> You thought maybe twins, one with Ds is unusual...listen to this. I just

> met a mother and a daughter who each have a child with Down syndrome. The

> mother's child is 4, and Laurie, her daughter, has a 3 month old with Ds.

> Both are straight trisomy 21 too! They really want to find anyone else in

> the world with this going on. I remember being sooooo excited (still am)

to

> find all of you. Does anyone remember how that happened. I think it had

> something to do with ? Did I find you on another Ds website?

Forgive

> my ailing mind.

Hi ;

From what I have seen (I might be wrong) a mother and her daughter both

having children with trisomy 21 down syndrome is more common then twins, one

with ds. I know of two families in my area where a mother and her daughter

both have children with down syndrome....but the exception is that the

mother's child with ds is alot older then the daughter's child with ds.

I believe when I was on the listserve (1-2 years ago now)

that there were several families where someone had a child with ds along

with a sibling with trisomy 21.

BTW My hubby's cousin had a baby exactly 5 months after and Nicala

were born and the baby has trisomy 21 too. There does seem to be some type

of familiar pre disposition to trisomy 21 ds...IMO.

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> That's very interesting, . In my husband's family, there have been

three

> people in four generations with trisomy 21. His grandmother's brother, his

> uncle (her son) and aunt's pregnancy (which they did not have), and our

son

> . It's not translocation, just trisomy 21. I think there must be

some

> connection, but the doctors tell me it's just coincidence and everything

I've

> read says the same. Maybe they'll discover some connection in future

research.

>

>

> (mom of (DS) and )

One thing that science has just recently realized (some of you probably know

what I am talking about) is that 74% of trisomy 21 mothers have a MTHFR

mutation. I have this particular mutation myself. 40% of the population

has this mutation so it can't be the ONLY contributing factor to trisomy 21

but it would make sense to have it more in one family then another (since

the mutation is hereditary). I cut and pasted some of my editorial comments

from our March newsletter.

, mom to twins Nicala & ,ds (3) and (1)

On page 8 you will notice a summary (written by Dr. ) of a research

study that was done on the causes of Down syndrome. I participated in this

study and found the results to be very informative. I have the full report

that was published in American Journal for Clinical Nutrition (the study was

FDA funded and approved) and would be willing to send a copy to anyone

interested.

Approximately 74% of mothers who have a child with Down syndrome have

one or both copies of the gene affected (MTHFR: Methelenetetrahydrofolate

Reductase). Since I have this mutation and my homocysteine levels are high

I am taking folic acid, B6, B12 and TMG. People with this mutation usually

have high homocysteine, which is a cardiac risk. This news is all fairly

new to the medical profession so be prepared for your Dr. to be unaware of

this. I would suggest having your homocysteine levels tested. Ideal levels

are 6-8 micro-mol/Liter.

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In a message dated 3/19/00 2:40:52 PM Eastern Standard Time,

cabevizzo@... writes:

<< . I think there must be some

connection, but the doctors tell me it's just coincidence and everything I've

read says the same. Maybe they'll discover some connection in future

research. >>

HAS ANYONE ACTUALLY BEEN TESTED TO SEE IF THEY ARE A CARRIER? BECAUSE OUR

FAMILY HAS TWO WITH DS, MOST OF US HAVE NOW BEEN TESTED TO CHECK OUT OUR

GENES....MY HUSBANDS AND DAUGHTER'S WERE FINE, BUT...I, THE MOM, AM A

CARRIER. MY GENES ARE A BALANCED TRANSLOCATION, BUT THERE IS A 50/50 CHANCE

THAT EACH OF MY CHILDREN COULD BE CARRIERS. MY DAUGHTER IS OK BUT TWO OF OUR

OTHER BOYS HAVE NOT YET BEEN TESTED

DR. LEICHTMAN EXPLAINED TO US THAT AS A CARRIER, WITH EACH PREGNANCY ONE OF

FOUR SITUATIONS WILL HAPPEN...I WILL MISCARRY, OR I WILL HAVE A CHILD WITH

DS, OR I WILL HAVE A NORMAL CHILD, OR I WILL HAVE A NORMAL CHILD WHO IS A

CARRIER.

I HAVE INDEED HAD 3 MISCARRIAGES, 2 WITH DS, AND 3 OTHER NORMAL CHILDREN WHO

HAVE NOT ALL BEEN TESTED YET.

SO, HAVE ANY OF THE REST OF YOU WITH MORE THAN ONE DS CHILD BEEN TESTED?

PEGGY....PLEASE FORGIVE THE CAPITAL LETTERS, I WAS HOLDING A SLEEPY BABY AND

TRYING TO TYPE SO ALL CAPS HELPED!

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Peggy-

Both my sister and I have children with DS. She is 13 years older than me (no

siblings in between-my Mom could not get pregnant and then I was an accident!)

She had Jim when she was 28 years old. I had Alyssa when I was 35.

After my nephew was born 21 years ago, my sister and her husband were

tested--but there was no indication that she was a carrier.

After was 2 years old, we tried for three years to have a child--only

results were 2 miscarriages. A few specialists indicated that I should also

be tested since the miscarriages may have occurred because of the history of

DS. I turned out NOT to be a carrier as was also the result for my sister.

Two years later, we bacame pregnant---had the AFP performed and the results

showed risk due to my age and multiple birth. Refused to have an amnio done

because it didn't matter to me what the twins had---we had waited too long to

have more kids and did not want to risk it.

**I am a scientist and believe what our Geneticist stated--We (possibly my

side but my husband also has a cousin (37 years) with DS) may be suffering

from " Sticky Genes " --Some of the genes may be sticky and slower than the

others during cell division--and if this occurs, there may be a higher chance

for the extra chromosome.

**Even though my kids will likely come out as not being carriers--they may

still have a chance of having a child with DS. In our case it seems as if

testing may not tell us anything more about our chances.

Fran

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Peggy, I am . I have 6 1/2(DS) and Dayton 21months(DS). I

was 18 when I had . We found out she was Transloaction 13. So that

meant test on me and hubby. I am a carrier for DS. WHY? I don't know we have

went back for the last 4generations and can not find anyone in my family

with DS. WEIRD.... I knew my chances were in the middle to have another. At

the time were medical science was, my chances were 1 in 100. I got pregnat

4yrs later and WE did not do any testing to know before hand. The only thing

we did was grade 2 or 3 ultrasound. Everything was borderline for DS. So no

definte or anything. He was born also with the same type of DS. So my

chances now are 1 in 5. So baby factory is closed here for just this reason.

I have always wanted 4 children so adoption is on my plate now. WELL LATER

IN THE FUTURE.

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http://www.gohip.com/freevideo/

Re: [RE: Situation]

>From: PeggyLago@...

>

>In a message dated 3/19/00 2:40:52 PM Eastern Standard Time,

>cabevizzo@... writes:

>

><< . I think there must be some

> connection, but the doctors tell me it's just coincidence and everything

I've

> read says the same. Maybe they'll discover some connection in future

>research. >>

>HAS ANYONE ACTUALLY BEEN TESTED TO SEE IF THEY ARE A CARRIER? BECAUSE OUR

>FAMILY HAS TWO WITH DS, MOST OF US HAVE NOW BEEN TESTED TO CHECK OUT OUR

>GENES....MY HUSBANDS AND DAUGHTER'S WERE FINE, BUT...I, THE MOM, AM A

>CARRIER. MY GENES ARE A BALANCED TRANSLOCATION, BUT THERE IS A 50/50

CHANCE

>THAT EACH OF MY CHILDREN COULD BE CARRIERS. MY DAUGHTER IS OK BUT TWO OF

OUR

>OTHER BOYS HAVE NOT YET BEEN TESTED

>DR. LEICHTMAN EXPLAINED TO US THAT AS A CARRIER, WITH EACH PREGNANCY ONE OF

>FOUR SITUATIONS WILL HAPPEN...I WILL MISCARRY, OR I WILL HAVE A CHILD WITH

>DS, OR I WILL HAVE A NORMAL CHILD, OR I WILL HAVE A NORMAL CHILD WHO IS A

>CARRIER.

>I HAVE INDEED HAD 3 MISCARRIAGES, 2 WITH DS, AND 3 OTHER NORMAL CHILDREN

WHO

>HAVE NOT ALL BEEN TESTED YET.

>SO, HAVE ANY OF THE REST OF YOU WITH MORE THAN ONE DS CHILD BEEN TESTED?

>PEGGY....PLEASE FORGIVE THE CAPITAL LETTERS, I WAS HOLDING A SLEEPY BABY

AND

>TRYING TO TYPE SO ALL CAPS HELPED!

>

>------------------------------------------------------------------------

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>1/936/1/_/598201/_/953825318/

>------------------------------------------------------------------------

>

>http://DSyndrome.com/Multiples

>

>

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