Re: Question about blood tests for MDS %

[Guest guest]

I did have more than one test. I had only found out when my daughter was 10

months old. The doctors did not even believe the test and they suggested having

another one done. The first test showed 40% mds and 100% triple x syndrome.

The second test they did, they scraped skin cells from the inside of her mouth

and tested over 500 cells. The second test was called a (fish test I think) it

came back with 33% mds and 98% triple x. How is Rose doing as far as the

leukemia? I am praying she is doing well.

Sue

Question about blood tests for MDS %

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts.... thanks.

Sinead ( & Rose)

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi.

They tested my daughter Kerra with a blood test and a skin test. The

percentages in her blood were only 2% but 33% in her skin cells. Looking back I

dont think I would have had the skin test. They cut off a large piece of skin

from her upper arm and it was very painful.

The skin test really did not tell me anything more than the blood test had. It

was a new percentage but knowing that was not beneficial in any way. To me the

percentages do not mean too much. That is just my opinion though. I am not even

sure if a higher percentage means anything or not. I am sure there are those in

the group that do know that.

Thanks and good luck.

sineadkirk wrote:

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts....thanks.

Sinead ( & Rose)

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

, I have to agree with you about not really knowing any more. They said

the skin test was more accurate although they just scraped skin from the inside

of my daughter's mouth and it was no big deal, I still don't know any more than

I did. I was told that to know exactly where the extra chromosome 21 is they

would have to biopsy each organ including the brain. The doctor said she would

not do that and I certainly would not agree with that either. I think it is one

of those things where did the cells go? Even if they are in the brain what part

of the brain? What will the affect? I really think it is just a waiting game

until they are older and we can actually see the where if any the delays are.

The only thing I know is that less has shown on the inside of my daughters mouth

than in her blood. What that will mean for the future I still do not know. I

do know that for right now my daughter does not show many aspects of mds or ds,

thank the

LORD. I do find myself worry about health problems more than anything else.

Sue

Re: Question about blood tests for MDS %

Hi.

They tested my daughter Kerra with a blood test and a skin test. The percentages

in her blood were only 2% but 33% in her skin cells. Looking back I dont think I

would have had the skin test. They cut off a large piece of skin from her upper

arm and it was very painful.

The skin test really did not tell me anything more than the blood test had. It

was a new percentage but knowing that was not beneficial in any way. To me the

percentages do not mean too much. That is just my opinion though. I am not even

sure if a higher percentage means anything or not. I am sure there are those in

the group that do know that.

Thanks and good luck.

sineadkirk <sineadkirkyahoo (DOT) com> wrote:

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts.... thanks.

Sinead ( & Rose)

------------ --------- --------- ---

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Sinead,

I was away for a little bit, so I'm sorry if I don't know how much has been

explained to you about MDS, etc...

but as I was reading the responses, I wondered if the answers made sense to

you or not...

So, if you know all this.........just delete me..ha!

My child with MDS is 15 now.......when he was diagnosed at about 16 mos

old... the geneticist sure SEEMED like she knew what she was talking about- but

in hindsight............she didn't. His blood, based on 20 cells tested,

showed 50% affected. She sat me down and told me things like...........he

might

never graduate college- but he'll definitely be higher functioning because he

has some normal cells... etc.

I think that only in the last 10 years or so, have the learned more about

the nature of mosaicism. Every single tissue type can have a different ratio

of affected cells..............every organ could have a different ratio of

cells. Another geneticist explained to me........that the thing about testing

blood cells is, the white cells are used, and of course these are also the

types of cells involved in the immune system--- its their JOB to destroy

abnormal cells. So, if you have a blood, and a skin test done, for

example............ most likely will be completely different numbers!

But the bottom line is............... we can never know what percentage the

brain is affected. My son, who the doctors all said would be higher

functioning..................in many ways, this is not the case at all! I wish

sometimes I wasn't so young when I had him, or so trusting of the doctors

prognosis! I didn't do some things with him when he was younger, that I wish I

had!

I often wonder if his brain doesn't have a higher percentage of affected

cells........... and just I wish I'd understood that possibility when he was

first diagnosed!

You can have hear skin tested. You of course have to decide what's best for

YOU and your family. Maybe you will decide that will give you a more

complete picture.

Good luck!

Angel

Mom to 15 MDS/Hirschsprung's

5 sibs

In a message dated 3/2/2008 9:44:54 P.M. Mountain Standard Time,

jlowe8362@... writes:

I am on the same page with this one i was offered other tests for bryce but

i didnt really see the point the fact was he had MDS and knowing a percentage

would not really change anything it wasnt going to make me push any less for

him to have all services available to him and it would not change the way i

raised him i think it really just would have given me more questions not

knowing i just urge him to do his best and i try to never make excuses for him

i

know that he is capable of anything he sets his mind to it just may take him

a few more tries at some things than others i guess to me it just didnt

really matter its just a number it is not what defines our children or what

they

are capable of

jennifer

Green wrote:

Hi ,

I was once in yours shoes and I wanted to know the percentage. However,

what I have learned is you do not know what part of the body is affected

with the Ds cells. So the percentage is not beneficial.

mom to 12, 10, 7 and 5 mDs

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of Blank

Sent: Sunday, March 02, 2008 7:42 PM

To: MosaicDS

Subject: Re: Question about blood tests for MDS %

Hi.

They tested my daughter Kerra with a blood test and a skin test. The

percentages in her blood were only 2% but 33% in her skin cells. Looking

back I dont think I would have had the skin test. They cut off a large piece

of skin from her upper arm and it was very painful.

The skin test really did not tell me anything more than the blood test had.

It was a new percentage but knowing that was not beneficial in any way. To

me the percentages do not mean too much. That is just my opinion though. I

am not even sure if a higher percentage means anything or not. I am sure

there are those in the group that do know that.

Thanks and good luck.

sineadkirk <sineadkirk@... <mailto:sineadkirk%40yahoo.com> > wrote:

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts....thanks.

Sinead ( & Rose)

---------------------------------

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now.

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[Guest guest]

Hi ,

I was once in yours shoes and I wanted to know the percentage. However,

what I have learned is you do not know what part of the body is affected

with the Ds cells. So the percentage is not beneficial.

mom to 12, 10, 7 and 5 mDs

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of Blank

Sent: Sunday, March 02, 2008 7:42 PM

To: MosaicDS

Subject: Re: Question about blood tests for MDS %

Hi.

They tested my daughter Kerra with a blood test and a skin test. The

percentages in her blood were only 2% but 33% in her skin cells. Looking

back I dont think I would have had the skin test. They cut off a large piece

of skin from her upper arm and it was very painful.

The skin test really did not tell me anything more than the blood test had.

It was a new percentage but knowing that was not beneficial in any way. To

me the percentages do not mean too much. That is just my opinion though. I

am not even sure if a higher percentage means anything or not. I am sure

there are those in the group that do know that.

Thanks and good luck.

sineadkirk <sineadkirk@... <mailto:sineadkirk%40yahoo.com> > wrote:

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts....thanks.

Sinead ( & Rose)

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it

now.

[Guest guest]

Sorry I meant to say Sinead.

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of Blank

Sent: Sunday, March 02, 2008 7:42 PM

To: MosaicDS

Subject: Re: Question about blood tests for MDS %

Hi.

They tested my daughter Kerra with a blood test and a skin test. The

percentages in her blood were only 2% but 33% in her skin cells. Looking

back I dont think I would have had the skin test. They cut off a large piece

of skin from her upper arm and it was very painful.

The skin test really did not tell me anything more than the blood test had.

It was a new percentage but knowing that was not beneficial in any way. To

me the percentages do not mean too much. That is just my opinion though. I

am not even sure if a higher percentage means anything or not. I am sure

there are those in the group that do know that.

Thanks and good luck.

sineadkirk <sineadkirk@... <mailto:sineadkirk%40yahoo.com> > wrote:

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts....thanks.

Sinead ( & Rose)

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it

now.

[Guest guest]

I am on the same page with this one i was offered other tests for bryce but i

didnt really see the point the fact was he had MDS and knowing a percentage

would not really change anything it wasnt going to make me push any less for him

to have all services available to him and it would not change the way i raised

him i think it really just would have given me more questions not knowing i just

urge him to do his best and i try to never make excuses for him i know that he

is capable of anything he sets his mind to it just may take him a few more tries

at some things than others i guess to me it just didnt really matter its just a

number it is not what defines our children or what they are capable of

jennifer

Green wrote:

Hi ,

I was once in yours shoes and I wanted to know the percentage. However,

what I have learned is you do not know what part of the body is affected

with the Ds cells. So the percentage is not beneficial.

mom to 12, 10, 7 and 5 mDs

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of Blank

Sent: Sunday, March 02, 2008 7:42 PM

To: MosaicDS

Subject: Re: Question about blood tests for MDS %

Hi.

They tested my daughter Kerra with a blood test and a skin test. The

percentages in her blood were only 2% but 33% in her skin cells. Looking

back I dont think I would have had the skin test. They cut off a large piece

of skin from her upper arm and it was very painful.

The skin test really did not tell me anything more than the blood test had.

It was a new percentage but knowing that was not beneficial in any way. To

me the percentages do not mean too much. That is just my opinion though. I

am not even sure if a higher percentage means anything or not. I am sure

there are those in the group that do know that.

Thanks and good luck.

sineadkirk <sineadkirk@... <mailto:sineadkirk%40yahoo.com> > wrote:

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts....thanks.

Sinead ( & Rose)

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it

now.

[Guest guest]

Hi Sue

I've been meaning to ask you for ages but what is triple x??? Sorry for being

so ignorant.

Fiona

Question about blood tests for MDS %

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts.... thanks.

Sinead ( & Rose)

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi Sinead

In my opinion, having another test is not necessary. The purpose of the test

is to tell you if your child has MDS or not and in your case, you have that

diagnosis. Each time you do a test, the numbers could vary because of the way

the two different cell lines move about. Knowing the actual percent as your

child grows will not change the way you take care of her. The only reason for

additional testing would be to participate in research. That way, the

researchers will have accurate data and learn more about MDS.

I know alot of people worry about the percentages, but honestly a percentage

number does not tell you the outcome. This is because the affected cells could

be anywhere in the body and there is no way of knowing what areas are affected

until you see something happen. So, as hard as that may seem, it is just a " wait

and see " kind of thing.

Kristy

sineadkirk wrote:

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts....thanks.

Sinead ( & Rose)

[Guest guest]

My daughter was diagnosed by blood test as 25% MTDS at 2 1/2 months

old. We opted for a second test (denial) and had a skin biopsy done 20 % MTDS.

This test was traumatic and left a scar. I wish we had not done it but it was

presented as an easy painless test. The labs used by our Children's

Hospital could not do the cheek scraping like we had hoped for. As you can see

the

test results were not that much different in our case. We hope Rose is doing

well! and age 2 1/2 years old

In a message dated 3/2/2008 7:08:54 P.M. Eastern Standard Time,

suejohnson524@... writes:

I did have more than one test. I had only found out when my daughter was 10

months old. The doctors did not even believe the test and they suggested

having another one done. The first test showed 40% mds and 100% triple x

syndrome. The second test they did, they scraped skin cells from the inside of

her

mouth and tested over 500 cells. The second test was called a (fish test I

think) it came back with 33% mds and 98% triple x. How is Rose doing as far as

the leukemia? I am praying she is doing well.

Sue

----- Original Message ----

From: sineadkirk <_sineadkirk@..._ (mailto:sineadkirk@...) >

To: _MosaicDS@yahoogroupMosai_ (mailto:MosaicDS )

Sent: Sunday, March 2, 2008 1:11:25 PM

Subject: Question about blood tests for MDS %

Hi Everyone,

Thank you for your lovely messages...it can be a bit daunting joining a

group like this but you have all been great.

My daughter Rose (9 months old) was diagnosed with 66% MDS when she was

around three weeks old. At that time she was being treated for

leukaemia and a geneticist told us that it may not be as high as 66%

becuase of her blood disorder at that time. I don't think it is as high

as 66% because she seems to behave like any other baby.

I was wondering if any of you guys have had more than one test carried

out to determine the MDS percentage and what was the outcome. Do you

think it is of any use to get another test done? Do the results vary

much with each test?

I'd love to hear your thoughts.... thanks.

Sinead ( & Rose)

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

_http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_

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[Guest guest]

Hi Everyone,

I feel that the cell lines and their percentages are a very misunderstood

area. I’ve seen many people share their percentage of BLOOD cells and

correlate that percentage to hopeful outcomes for their child. I hear about

how a child has 65% typical cells and she is doing very well or another

child that has 85% normal cells and again doing very well. However 96% of

my son’s BLOOD cells have Trisomy 21 and he too is doing very well. How do

you explain this?

What I seem to take away from the research I have done is that there are

many CELL LINES throughout the body, BLOOD cells, BRAIN cells, BONE cells,

SKIN cells, HEART cells, etc. and the very concept of “Mosaic” is that ALL

of these cell lines can each carry different percentages, some totally

affected or some completely unaffected….any combination. It all depends on

where the “error” or the “correction” occurred in the creation of our child.

If for instance the zygote had 47 chromosomes, and at some point an error

occurred (actually a correction) that dropped one of the chromosomes, it

would depend on what cell lines were created before this occurred. Or let’s

say, the zygote had the typical 46 chromosomes, and at some point a division

error occurred, causing the new cell with the 47 chromosomes to begin

copying from that point forward, however quite a bit of cell development may

have already occurred with the typical number of chromosomes, before this

event took place.

It can be very confusing and I often get different answers from different

professionals. I have even had Dr. Pueschel personally tell me that my son

did not have Mosaicism, because the percentage of “typical” blood cells was

not great enough (a sentiment shared by my pediatrician). I now know this

is completely false, and when I spoke with him at a seminar months later

(after my research) and I explained the above scenarios, he seemed to

recant and then defer to an “it just doesn’t matter that it’s Mosaic”

comment. I bring this up to encourage everyone to do their own research.

The Internet has been very helpful for me. I have had several occasions

where educating myself first and then getting the professionals advice

actually got more accomplished for my son than when I went in un-educated.

This is for medical and educational situations alike!

Learning a little more about all this was a major contributor to my husband

and I not pursuing any other tests after his second blood test confirmed the

Mosaic diagnosis. We initially thought it would help us “figure something

out” pertaining to our son’s future, tell us what we could expect. We were

also looking for some answers to why our son has no medical problems, why he

has very few physical features and why he seems as though he may not be

cognitively disabled, especially with 96% of his BLOOD cells affected with

Trisomy 21!

I cannot seem to find the answers that I am looking for! I don’t know that

I will, which is extremely hard for my personality type to acceptJ. I

personally still have much sadness 3 ½ years later. Every day I feel so,

so thankful to have my son in my life AND every day I wish that he did not

have MDS. In the end though for me, it has been my love for my son that has

gotten me through each day….another CELL line test will not help facilitate

my healing.

Aloha,

son to Aiden, 3 ½ w/MDS

[Guest guest]

How does your son have MDS when he is 96% DS? Am I not understanding?

My daughter is DS tho we think differently. Thru amino 20 cells were checked

and all came back DS. When she had her open heart surgery, we asked for her to

be retested during her surgery, and to check 100 cells. Well they only checked

30 cells and it came back as all 30 cells were DS. I still get asked if she is

MDS. Alot of that comes from therapists who work with special needs every day.

My daughter is very high functioning and is right on target for her age. Not

sure I will ever get her retested but might one day.

Thanks

Mom to Zephany, 21 months, DS and to

Jezeca, 5.8 years, Trisomy 10q dup/5p del

Re: Question about blood tests for MDS %

Hi Everyone,

I feel that the cell lines and their percentages are a very misunderstood

area. I've seen many people share their percentage of BLOOD cells and

correlate that percentage to hopeful outcomes for their child. I hear about

how a child has 65% typical cells and she is doing very well or another

child that has 85% normal cells and again doing very well. However 96% of

my son's BLOOD cells have Trisomy 21 and he too is doing very well. How do

you explain this?

What I seem to take away from the research I have done is that there are

many CELL LINES throughout the body, BLOOD cells, BRAIN cells, BONE cells,

SKIN cells, HEART cells, etc. and the very concept of " Mosaic " is that ALL

of these cell lines can each carry different percentages, some totally

affected or some completely unaffected..any combination. It all depends on

where the " error " or the " correction " occurred in the creation of our child.

If for instance the zygote had 47 chromosomes, and at some point an error

occurred (actually a correction) that dropped one of the chromosomes, it

would depend on what cell lines were created before this occurred. Or let's

say, the zygote had the typical 46 chromosomes, and at some point a division

error occurred, causing the new cell with the 47 chromosomes to begin

copying from that point forward, however quite a bit of cell development may

have already occurred with the typical number of chromosomes, before this

event took place.

It can be very confusing and I often get different answers from different

professionals. I have even had Dr. Pueschel personally tell me that my son

did not have Mosaicism, because the percentage of " typical " blood cells was

not great enough (a sentiment shared by my pediatrician). I now know this

is completely false, and when I spoke with him at a seminar months later

(after my research) and I explained the above scenarios, he seemed to

recant and then defer to an " it just doesn't matter that it's Mosaic "

comment. I bring this up to encourage everyone to do their own research.

The Internet has been very helpful for me. I have had several occasions

where educating myself first and then getting the professionals advice

actually got more accomplished for my son than when I went in un-educated.

This is for medical and educational situations alike!

Learning a little more about all this was a major contributor to my husband

and I not pursuing any other tests after his second blood test confirmed the

Mosaic diagnosis. We initially thought it would help us " figure something

out " pertaining to our son's future, tell us what we could expect. We were

also looking for some answers to why our son has no medical problems, why he

has very few physical features and why he seems as though he may not be

cognitively disabled, especially with 96% of his BLOOD cells affected with

Trisomy 21!

I cannot seem to find the answers that I am looking for! I don't know that

I will, which is extremely hard for my personality type to acceptJ. I

personally still have much sadness 3 ½ years later. Every day I feel so,

so thankful to have my son in my life AND every day I wish that he did not

have MDS. In the end though for me, it has been my love for my son that has

gotten me through each day..another CELL line test will not help facilitate

my healing.

Aloha,

son to Aiden, 3 ½ w/MDS

[Guest guest]

Couple of thoughts on this post...

I have an 11 yr old daughter.........when i was preg with her, my amnio came

back abnormal...................mosaic 20p-. When she was born, I had her

cord blood tested..............normal. Later, in life, I began to worry

about some things, and when she was maybe... 9? I had a skin test done. She

was

totally numbed, and they did it near the armpit. She felt nothing, no

complaints, and it healed up pretty quick, but yes...left a small round scar-

but

no one really see's it under her arm. Well her skin test was normal also.

Our geneticist said........................the amnio could have been wrong,

and that it could have been the PLACENTA that had the abnormal cells...not the

baby???????????????? So, could the placenta have issues that the baby

somehow doesn't???

All in all though..even with 2 " normal " test results...I sometimes wonder

how the amnio came back saying 1/3 of the cells tested (can't recall how many

right now) showed a chromosome deletion! Could she have it............and

it just " hid " well during the later tests?

It's almost like...the more you test..........................the more

unsure you are! LOL

Angel

In a message dated 3/5/2008 10:43:42 A.M. Mountain Standard Time,

agirlnamedsuess@... writes:

Our geneticist, Dr. Flannery of MCG, states that the cheek

scraping is not sufficient for a skin test and he does not recommend

it 9because it " is " so invasive and will leave a scar) UNLESS you

are having surgery. One nice thing about the viable tissue test is

that you can painlessly test the placenta once you deliver. Just

have your script in hand before delivery.

Well, I can also say that skin cells and brain cells originate from

the same cells. So, it actually " is " good that the percentage is

less, even a little less. It does not seem with 20% cells affected

(provided they at least tested 500 cells) will be that horrifying

for your child. You are very lucky that the percentage was not

higher in the skin test. if a mere 20-cell count was done, I

encourage you to have more cells (500 at least) tested. Perhaps a

cheek swab of 1,000 cells may be helpful 9even though Doc does not

recommend).

That is very interesting that the two percentages were close in

proximity.

Kristy, do you know if this is the typical scenario (for the two

percentages to be somewhat close in range). I know they can be

vastly different, but I want " real world results " here from people

who know firsthand. :0)

>

> My daughter was diagnosed by blood test as 25% MTDS at 2

1/2 months

> old. We opted for a second test (denial) and had a skin biopsy

done 20 % MTDS.

> This test was traumatic and left a scar. I wish we had not done it

but it was

> presented as an easy painless test. The labs used by our

Children's

> Hospital could not do the cheek scraping like we had hoped for.

As you can see the

> test results were not that much different in our case. We hope

Rose is doing

> well! and age 2 1/2 years old

>

>

>

>

>

>

> In a message dated 3/2/2008 7:08:54 P.M. Eastern Standard Time,

> suejohnson524@... writes:

>

>

>

>

> I did have more than one test. I had only found out when my

daughter was 10

> months old. The doctors did not even believe the test and they

suggested

> having another one done. The first test showed 40% mds and 100%

triple x

> syndrome. The second test they did, they scraped skin cells from

the inside of her

> mouth and tested over 500 cells. The second test was called a

(fish test I

> think) it came back with 33% mds and 98% triple x. How is Rose

doing as far as

> the leukemia? I am praying she is doing well.

>

> Sue

>

> ----- Original Message ----

> From: sineadkirk <_sineadkirk@..._ (mailto:sineadkirk@...) >

> To: _MosaicDS@yahoogroupMosai_ (mailto:MosaicDS )

> Sent: Sunday, March 2, 2008 1:11:25 PM

> Subject: Question about blood tests for MDS %

>

> Hi Everyone,

> Thank you for your lovely messages...it can be a bit daunting

joining a

> group like this but you have all been great.

>

> My daughter Rose (9 months old) was diagnosed with 66% MDS when

she was

> around three weeks old. At that time she was being treated for

> leukaemia and a geneticist told us that it may not be as high as

66%

> becuase of her blood disorder at that time. I don't think it is as

high

> as 66% because she seems to behave like any other baby.

>

> I was wondering if any of you guys have had more than one test

carried

> out to determine the MDS percentage and what was the outcome. Do

you

> think it is of any use to get another test done? Do the results

vary

> much with each test?

>

> I'd love to hear your thoughts.... thanks.

> Sinead ( & Rose)

>

> __________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

> _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_

> (http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ)

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

> **************It's Tax Time! Get tips, forms, and advice on AOL

Money &

> Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

>

>

> [Non-text portions of this message have been removed]

>

Become a member of IMDSA today at http://www.imdsa.com

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

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

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[Guest guest]

Kristy also pointed out to me that it is at least two cell lines in

the body; your child may have more than two different cell lines.

Mosaicism means two " or more " different cell lines in the body.

> How does your son have MDS when he is 96% DS? Am I not

understanding?

>

> My daughter is DS tho we think differently. Thru amino 20 cells

were checked and all came back DS. When she had her open heart

surgery, we asked for her to be retested during her surgery, and to

check 100 cells. Well they only checked 30 cells and it came back as

all 30 cells were DS. I still get asked if she is MDS. Alot of that

comes from therapists who work with special needs every day. My

daughter is very high functioning and is right on target for her

age. Not sure I will ever get her retested but might one day.

>

> Thanks

>

> Mom to Zephany, 21 months, DS and to

> Jezeca, 5.8 years, Trisomy 10q dup/5p del

>

> Re: Question about blood tests for MDS %

>

> Hi Everyone,

>

> I feel that the cell lines and their percentages are a very

misunderstood

> area. I've seen many people share their percentage of BLOOD cells

and

> correlate that percentage to hopeful outcomes for their child. I

hear about

> how a child has 65% typical cells and she is doing very well or

another

> child that has 85% normal cells and again doing very well. However

96% of

> my son's BLOOD cells have Trisomy 21 and he too is doing very

well. How do

> you explain this?

>

> What I seem to take away from the research I have done is that

there are

> many CELL LINES throughout the body, BLOOD cells, BRAIN cells,

BONE cells,

> SKIN cells, HEART cells, etc. and the very concept of " Mosaic " is

that ALL

> of these cell lines can each carry different percentages, some

totally

> affected or some completely unaffected..any combination. It all

depends on

> where the " error " or the " correction " occurred in the creation of

our child.

> If for instance the zygote had 47 chromosomes, and at some point

an error

> occurred (actually a correction) that dropped one of the

chromosomes, it

> would depend on what cell lines were created before this occurred.

Or let's

> say, the zygote had the typical 46 chromosomes, and at some point

a division

> error occurred, causing the new cell with the 47 chromosomes to

begin

> copying from that point forward, however quite a bit of cell

development may

> have already occurred with the typical number of chromosomes,

before this

> event took place.

>

> It can be very confusing and I often get different answers from

different

> professionals. I have even had Dr. Pueschel personally tell me

that my son

> did not have Mosaicism, because the percentage of " typical " blood

cells was

> not great enough (a sentiment shared by my pediatrician). I now

know this

> is completely false, and when I spoke with him at a seminar months

later

> (after my research) and I explained the above scenarios, he seemed

to

> recant and then defer to an " it just doesn't matter that it's

Mosaic "

> comment. I bring this up to encourage everyone to do their own

research.

> The Internet has been very helpful for me. I have had several

occasions

> where educating myself first and then getting the professionals

advice

> actually got more accomplished for my son than when I went in un-

educated.

> This is for medical and educational situations alike!

>

> Learning a little more about all this was a major contributor to

my husband

> and I not pursuing any other tests after his second blood test

confirmed the

> Mosaic diagnosis. We initially thought it would help us " figure

something

> out " pertaining to our son's future, tell us what we could expect.

We were

> also looking for some answers to why our son has no medical

problems, why he

> has very few physical features and why he seems as though he may

not be

> cognitively disabled, especially with 96% of his BLOOD cells

affected with

> Trisomy 21!

>

> I cannot seem to find the answers that I am looking for! I don't

know that

> I will, which is extremely hard for my personality type to

acceptJ. I

> personally still have much sadness 3 ½ years later. Every day I

feel so,

> so thankful to have my son in my life AND every day I wish that he

did not

> have MDS. In the end though for me, it has been my love for my son

that has

> gotten me through each day..another CELL line test will not help

facilitate

> my healing.

>

> Aloha,

>

>

>

> son to Aiden, 3 ½ w/MDS

>

>

[Guest guest]

This, again, would be a great question in our meeting next week with Dr.

-Cook. I can tell you that Tim's skin and blood cells are very close to

the same with only a 3% difference. And, I have to disagree with the idea that

the cheek swab not being accurate enough. The reason I would disagree is because

1) you still are getting skin cells and 2) I don't think our leading researchers

would use that method if it were inaccurate.

But that is just my opinion.

Kristy

wrote:

Our geneticist, Dr. Flannery of MCG, states that the cheek

scraping is not sufficient for a skin test and he does not recommend

it 9because it " is " so invasive and will leave a scar) UNLESS you

are having surgery. One nice thing about the viable tissue test is

that you can painlessly test the placenta once you deliver. Just

have your script in hand before delivery.

Well, I can also say that skin cells and brain cells originate from

the same cells. So, it actually " is " good that the percentage is

less, even a little less. It does not seem with 20% cells affected

(provided they at least tested 500 cells) will be that horrifying

for your child. You are very lucky that the percentage was not

higher in the skin test. if a mere 20-cell count was done, I

encourage you to have more cells (500 at least) tested. Perhaps a

cheek swab of 1,000 cells may be helpful 9even though Doc does not

recommend).

That is very interesting that the two percentages were close in

proximity.

Kristy, do you know if this is the typical scenario (for the two

percentages to be somewhat close in range). I know they can be

vastly different, but I want " real world results " here from people

who know firsthand. :0)

>

> My daughter was diagnosed by blood test as 25% MTDS at 2

1/2 months

> old. We opted for a second test (denial) and had a skin biopsy

done 20 % MTDS.

> This test was traumatic and left a scar. I wish we had not done it

but it was

> presented as an easy painless test. The labs used by our

Children's

> Hospital could not do the cheek scraping like we had hoped for.

As you can see the

> test results were not that much different in our case. We hope

Rose is doing

> well! and age 2 1/2 years old

>

>

>

>

>

>

> In a message dated 3/2/2008 7:08:54 P.M. Eastern Standard Time,

> suejohnson524@... writes:

>

>

>

>

> I did have more than one test. I had only found out when my

daughter was 10

> months old. The doctors did not even believe the test and they

suggested

> having another one done. The first test showed 40% mds and 100%

triple x

> syndrome. The second test they did, they scraped skin cells from

the inside of her

> mouth and tested over 500 cells. The second test was called a

(fish test I

> think) it came back with 33% mds and 98% triple x. How is Rose

doing as far as

> the leukemia? I am praying she is doing well.

>

> Sue

>

> Question about blood tests for MDS %

>

> Hi Everyone,

> Thank you for your lovely messages...it can be a bit daunting

joining a

> group like this but you have all been great.

>

> My daughter Rose (9 months old) was diagnosed with 66% MDS when

she was

> around three weeks old. At that time she was being treated for

> leukaemia and a geneticist told us that it may not be as high as

66%

> becuase of her blood disorder at that time. I don't think it is as

high

> as 66% because she seems to behave like any other baby.

>

> I was wondering if any of you guys have had more than one test

carried

> out to determine the MDS percentage and what was the outcome. Do

you

> think it is of any use to get another test done? Do the results

vary

> much with each test?

>

> I'd love to hear your thoughts.... thanks.

> Sinead ( & Rose)

>

> __________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

> _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_

> (http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ)

>

>

[Guest guest]

Skin and brain cells typically originate from the same type of cells

originally.

There are many, many cell lines in the body.

Ask 100 different medical people and you will get invariably 100

different answers.

Only you know your child. Your child could have 100 % affected cells

and do just fine. it just all depends on many variables.

Get this, I told my son's PCP that he had MDS 50% and he said, " 50%.

What's that? " I looked at him puzzled because he had told me two

seconds before this that he had just taken " a course on Down

Syndrome " and he acted pumped up about it. I started to tell him

that 50% meant one half of 100%. I couldn't, but I wanted to.

instead, I gently explained it to him. I really don't think he still

gets it. He may need another 'course. " LOL

>

> Hi Everyone,

>

>

>

> I feel that the cell lines and their percentages are a very

misunderstood

> area. I've seen many people share their percentage of BLOOD

cells and

> correlate that percentage to hopeful outcomes for their child. I

hear about

> how a child has 65% typical cells and she is doing very well or

another

> child that has 85% normal cells and again doing very well.

However 96% of

> my son's BLOOD cells have Trisomy 21 and he too is doing very

well. How do

> you explain this?

>

>

>

> What I seem to take away from the research I have done is that

there are

> many CELL LINES throughout the body, BLOOD cells, BRAIN cells,

BONE cells,

> SKIN cells, HEART cells, etc. and the very concept of " Mosaic " is

that ALL

> of these cell lines can each carry different percentages, some

totally

> affected or some completely unaffected….any combination. It all

depends on

> where the " error " or the " correction " occurred in the creation of

our child.

> If for instance the zygote had 47 chromosomes, and at some point

an error

> occurred (actually a correction) that dropped one of the

chromosomes, it

> would depend on what cell lines were created before this

occurred. Or let's

> say, the zygote had the typical 46 chromosomes, and at some point

a division

> error occurred, causing the new cell with the 47 chromosomes to

begin

> copying from that point forward, however quite a bit of cell

development may

> have already occurred with the typical number of chromosomes,

before this

> event took place.

>

>

>

> It can be very confusing and I often get different answers from

different

> professionals. I have even had Dr. Pueschel personally tell me

that my son

> did not have Mosaicism, because the percentage of " typical " blood

cells was

> not great enough (a sentiment shared by my pediatrician). I now

know this

> is completely false, and when I spoke with him at a seminar months

later

> (after my research) and I explained the above scenarios, he

seemed to

> recant and then defer to an " it just doesn't matter that it's

Mosaic "

> comment. I bring this up to encourage everyone to do their own

research.

> The Internet has been very helpful for me. I have had several

occasions

> where educating myself first and then getting the professionals

advice

> actually got more accomplished for my son than when I went in un-

educated.

> This is for medical and educational situations alike!

>

>

>

> Learning a little more about all this was a major contributor to

my husband

> and I not pursuing any other tests after his second blood test

confirmed the

> Mosaic diagnosis. We initially thought it would help us " figure

something

> out " pertaining to our son's future, tell us what we could

expect. We were

> also looking for some answers to why our son has no medical

problems, why he

> has very few physical features and why he seems as though he may

not be

> cognitively disabled, especially with 96% of his BLOOD cells

affected with

> Trisomy 21!

>

>

>

> I cannot seem to find the answers that I am looking for! I don't

know that

> I will, which is extremely hard for my personality type to

acceptJ. I

> personally still have much sadness 3 ½ years later. Every day I

feel so,

> so thankful to have my son in my life AND every day I wish that he

did not

> have MDS. In the end though for me, it has been my love for my

son that has

> gotten me through each day….another CELL line test will not help

facilitate

> my healing.

>

>

>

> Aloha,

>

>

>

> son to Aiden, 3 ½ w/MDS

>

>

>

>

[Guest guest]

Well, I can say that " wherever the problem lies healthwise, the

cells probably would show up 100% trisomic " . Make sense?

They should have tested " nearby " cells but not directly in the heart

since that was obvious to where the trisomic cells lay.

(At least it is one place in the body.)

I will have to look up the percentage of accuracy within 99%

confidence limits based on 30 cell counts, but I assure you that the

missed mosaicism within 99% certainty is greater than 50% with just

that many cells tested.

It is 89% when 20 cells are done with only 7 cells actually

examined. That number is a bit high for me to rely solely on a test

with that much uncertainty.

>

> How does your son have MDS when he is 96% DS? Am I not

understanding?

>

> My daughter is DS tho we think differently. Thru amino 20 cells

were checked and all came back DS. When she had her open heart

surgery, we asked for her to be retested during her surgery, and to

check 100 cells. Well they only checked 30 cells and it came back

as all 30 cells were DS. I still get asked if she is MDS. Alot of

that comes from therapists who work with special needs every day.

My daughter is very high functioning and is right on target for her

age. Not sure I will ever get her retested but might one day.

>

> Thanks

>

> Mom to Zephany, 21 months, DS and to

> Jezeca, 5.8 years, Trisomy 10q dup/5p del

>

>

> Re: Question about blood tests for MDS %

>

>

> Hi Everyone,

>

> I feel that the cell lines and their percentages are a very

misunderstood

> area. I've seen many people share their percentage of BLOOD

cells and

> correlate that percentage to hopeful outcomes for their child. I

hear about

> how a child has 65% typical cells and she is doing very well or

another

> child that has 85% normal cells and again doing very well.

However 96% of

> my son's BLOOD cells have Trisomy 21 and he too is doing very

well. How do

> you explain this?

>

> What I seem to take away from the research I have done is that

there are

> many CELL LINES throughout the body, BLOOD cells, BRAIN cells,

BONE cells,

> SKIN cells, HEART cells, etc. and the very concept of " Mosaic "

is that ALL

> of these cell lines can each carry different percentages, some

totally

> affected or some completely unaffected..any combination. It all

depends on

> where the " error " or the " correction " occurred in the creation

of our child.

> If for instance the zygote had 47 chromosomes, and at some point

an error

> occurred (actually a correction) that dropped one of the

chromosomes, it

> would depend on what cell lines were created before this

occurred. Or let's

> say, the zygote had the typical 46 chromosomes, and at some

point a division

> error occurred, causing the new cell with the 47 chromosomes to

begin

> copying from that point forward, however quite a bit of cell

development may

> have already occurred with the typical number of chromosomes,

before this

> event took place.

>

> It can be very confusing and I often get different answers from

different

> professionals. I have even had Dr. Pueschel personally tell me

that my son

> did not have Mosaicism, because the percentage of " typical "

blood cells was

> not great enough (a sentiment shared by my pediatrician). I now

know this

> is completely false, and when I spoke with him at a seminar

months later

> (after my research) and I explained the above scenarios, he

seemed to

> recant and then defer to an " it just doesn't matter that it's

Mosaic "

> comment. I bring this up to encourage everyone to do their own

research.

> The Internet has been very helpful for me. I have had several

occasions

> where educating myself first and then getting the professionals

advice

> actually got more accomplished for my son than when I went in un-

educated.

> This is for medical and educational situations alike!

>

> Learning a little more about all this was a major contributor to

my husband

> and I not pursuing any other tests after his second blood test

confirmed the

> Mosaic diagnosis. We initially thought it would help us " figure

something

> out " pertaining to our son's future, tell us what we could

expect. We were

> also looking for some answers to why our son has no medical

problems, why he

> has very few physical features and why he seems as though he may

not be

> cognitively disabled, especially with 96% of his BLOOD cells

affected with

> Trisomy 21!

>

> I cannot seem to find the answers that I am looking for! I don't

know that

> I will, which is extremely hard for my personality type to

acceptJ. I

> personally still have much sadness 3 ½ years later. Every day I

feel so,

> so thankful to have my son in my life AND every day I wish that

he did not

> have MDS. In the end though for me, it has been my love for my

son that has

> gotten me through each day..another CELL line test will not help

facilitate

> my healing.

>

> Aloha,

>

>

>

> son to Aiden, 3 ½ w/MDS

>

>

[Guest guest]

Hello,

I " m just jumping into this piece of conversation about the blood tests. I

haven't seen all the posts, so maybe what I ask has been said already. Have alot

of you gotten a second test? We had a 20 count blood test for Henry and they

dx'd right away...12% of cells affected in that sampling. Do most doctors

recommend further tests? I think Kristy did say something about this. I figure

life is unpredicatable enough and a percentage isn't going to tell me much

because of the mosaicism and each individual is different.

Kristy Colvin wrote:

This, again, would be a great question in our meeting next week with Dr.

-Cook. I can tell you that Tim's skin and blood cells are very close to

the same with only a 3% difference. And, I have to disagree with the idea that

the cheek swab not being accurate enough. The reason I would disagree is because

1) you still are getting skin cells and 2) I don't think our leading researchers

would use that method if it were inaccurate.

But that is just my opinion.

Kristy

wrote:

Our geneticist, Dr. Flannery of MCG, states that the cheek

scraping is not sufficient for a skin test and he does not recommend

it 9because it " is " so invasive and will leave a scar) UNLESS you

are having surgery. One nice thing about the viable tissue test is

that you can painlessly test the placenta once you deliver. Just

have your script in hand before delivery.

Well, I can also say that skin cells and brain cells originate from

the same cells. So, it actually " is " good that the percentage is

less, even a little less. It does not seem with 20% cells affected

(provided they at least tested 500 cells) will be that horrifying

for your child. You are very lucky that the percentage was not

higher in the skin test. if a mere 20-cell count was done, I

encourage you to have more cells (500 at least) tested. Perhaps a

cheek swab of 1,000 cells may be helpful 9even though Doc does not

recommend).

That is very interesting that the two percentages were close in

proximity.

Kristy, do you know if this is the typical scenario (for the two

percentages to be somewhat close in range). I know they can be

vastly different, but I want " real world results " here from people

who know firsthand. :0)

>

> My daughter was diagnosed by blood test as 25% MTDS at 2

1/2 months

> old. We opted for a second test (denial) and had a skin biopsy

done 20 % MTDS.

> This test was traumatic and left a scar. I wish we had not done it

but it was

> presented as an easy painless test. The labs used by our

Children's

> Hospital could not do the cheek scraping like we had hoped for.

As you can see the

> test results were not that much different in our case. We hope

Rose is doing

> well! and age 2 1/2 years old

>

>

>

>

>

>

> In a message dated 3/2/2008 7:08:54 P.M. Eastern Standard Time,

> suejohnson524@... writes:

>

>

>

>

> I did have more than one test. I had only found out when my

daughter was 10

> months old. The doctors did not even believe the test and they

suggested

> having another one done. The first test showed 40% mds and 100%

triple x

> syndrome. The second test they did, they scraped skin cells from

the inside of her

> mouth and tested over 500 cells. The second test was called a

(fish test I

> think) it came back with 33% mds and 98% triple x. How is Rose

doing as far as

> the leukemia? I am praying she is doing well.

>

> Sue

>

> Question about blood tests for MDS %

>

> Hi Everyone,

> Thank you for your lovely messages...it can be a bit daunting

joining a

> group like this but you have all been great.

>

> My daughter Rose (9 months old) was diagnosed with 66% MDS when

she was

> around three weeks old. At that time she was being treated for

> leukaemia and a geneticist told us that it may not be as high as

66%

> becuase of her blood disorder at that time. I don't think it is as

high

> as 66% because she seems to behave like any other baby.

>

> I was wondering if any of you guys have had more than one test

carried

> out to determine the MDS percentage and what was the outcome. Do

you

> think it is of any use to get another test done? Do the results

vary

> much with each test?

>

> I'd love to hear your thoughts.... thanks.

> Sinead ( & Rose)

>

> __________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

> _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_

> (http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ)

>

>

[Guest guest]

,

Where can I sign up for that " course " ?! LOL Does taking that course mean that

there is an owner's manual to Austin?! LOL

Hmmmmm....seems your doc isn't as informed as he thinks he is....

And thanks goes to for posing the question I wanted to ask, " Fake DS? " I

thought about that in the car on my way home this AM from a meeting, glad to see

someone is keeping up here LOL

And Kristy, is Garret's " I have issues " t-shirt too small for Tim? LOL

Maybe just finding a shirt that says, " Con-artist, inquire within " would do LOL

(I once saw a guy in Walmart wearing a shirt that said, " Quit picturing me

naked! " LOL)

Becky

Warmest Regards

Team BRATS

http://teambrats08.chipin.com/team-brats-becky-rowe-austin-trey-smith

to add the widget to your site click here:

http://www.chipin.com/mywidgets/id/d8c674ed5b95e675

Thanks for Donating!

Re: Question about blood tests for MDS %

Skin and brain cells typically originate from the same type of cells

originally.

There are many, many cell lines in the body.

Ask 100 different medical people and you will get invariably 100

different answers.

Only you know your child. Your child could have 100 % affected cells

and do just fine. it just all depends on many variables.

Get this, I told my son's PCP that he had MDS 50% and he said, " 50%.

What's that? " I looked at him puzzled because he had told me two

seconds before this that he had just taken " a course on Down

Syndrome " and he acted pumped up about it. I started to tell him

that 50% meant one half of 100%. I couldn't, but I wanted to.

instead, I gently explained it to him. I really don't think he still

gets it. He may need another 'course. " LOL

>

> Hi Everyone,

>

>

>

> I feel that the cell lines and their percentages are a very

misunderstood

> area. I've seen many people share their percentage of BLOOD

cells and

> correlate that percentage to hopeful outcomes for their child. I

hear about

> how a child has 65% typical cells and she is doing very well or

another

> child that has 85% normal cells and again doing very well.

However 96% of

> my son's BLOOD cells have Trisomy 21 and he too is doing very

well. How do

> you explain this?

>

>

>

> What I seem to take away from the research I have done is that

there are

> many CELL LINES throughout the body, BLOOD cells, BRAIN cells,

BONE cells,

> SKIN cells, HEART cells, etc. and the very concept of " Mosaic " is

that ALL

> of these cell lines can each carry different percentages, some

totally

> affected or some completely unaffected….any combination. It all

depends on

> where the " error " or the " correction " occurred in the creation of

our child.

> If for instance the zygote had 47 chromosomes, and at some point

an error

> occurred (actually a correction) that dropped one of the

chromosomes, it

> would depend on what cell lines were created before this

occurred. Or let's

> say, the zygote had the typical 46 chromosomes, and at some point

a division

> error occurred, causing the new cell with the 47 chromosomes to

begin

> copying from that point forward, however quite a bit of cell

development may

> have already occurred with the typical number of chromosomes,

before this

> event took place.

>

>

>

> It can be very confusing and I often get different answers from

different

> professionals. I have even had Dr. Pueschel personally tell me

that my son

> did not have Mosaicism, because the percentage of " typical " blood

cells was

> not great enough (a sentiment shared by my pediatrician) . I now

know this

> is completely false, and when I spoke with him at a seminar months

later

> (after my research) and I explained the above scenarios, he

seemed to

> recant and then defer to an " it just doesn't matter that it's

Mosaic "

> comment. I bring this up to encourage everyone to do their own

research.

> The Internet has been very helpful for me. I have had several

occasions

> where educating myself first and then getting the professionals

advice

> actually got more accomplished for my son than when I went in un-

educated.

> This is for medical and educational situations alike!

>

>

>

> Learning a little more about all this was a major contributor to

my husband

> and I not pursuing any other tests after his second blood test

confirmed the

> Mosaic diagnosis. We initially thought it would help us " figure

something

> out " pertaining to our son's future, tell us what we could

expect. We were

> also looking for some answers to why our son has no medical

problems, why he

> has very few physical features and why he seems as though he may

not be

> cognitively disabled, especially with 96% of his BLOOD cells

affected with

> Trisomy 21!

>

>

>

> I cannot seem to find the answers that I am looking for! I don't

know that

> I will, which is extremely hard for my personality type to

acceptJ. I

> personally still have much sadness 3 ½ years later. Every day I

feel so,

> so thankful to have my son in my life AND every day I wish that he

did not

> have MDS. In the end though for me, it has been my love for my

son that has

> gotten me through each day….another CELL line test will not help

facilitate

> my healing.

>

>

>

> Aloha,

>

>

>

> son to Aiden, 3 ½ w/MDS

>

>

>

>

[Guest guest]

I do NOT agree that it means absolutely nothing. On the contrary,

according to the book Medical Care in Down Syndrome, there is a

tendency towards normal cell lineage.

I must step in and say that with the mosaicism in my family that

this is absolutely true.

Typically, as also noted in the above book and many numerous places

as well, people with mosaicism on the whole tend to score higher on

IQ tests (about 30 points) than do those with Trisomy 21 DS.

You can absolutely " promote " normal cell growth with good health

habits such as diet, exercise, regular medical care/check-up's.

There is such a thing as " silencing " genes. And we work very hard at

doing so with with our mosaicism.

As with ANYTHING in life, the more you " dwell " on the bad, the worse

it will get. Get optimistic, stay positive, and build on what your

child (any of your children) " can " do. Stop dwelling on all " what

could happen's " . Chances are if you sit and dwell on the bad (like

we did for 3 years), you will severely impair your child's

development (and yours). I do not mean to sound harsh, but I am one

that votes for doctors to stop doing these tests and look at the

real issues your child faces, not the chromosome counts.

(i.e....If you notice a delay in your child in regards to walking,

then seek help in physical therapy to beef up on that skill. Spend

lots more one-on-one time with your child teaching him to walk.)

EVERY child is different. And I must add this>>> There are plenty of

children in the world today, who do NOT have Down Syndrome, which DO

HAVE some form of development delay. I can assure everyone here that

these parents are not " worried " about their child's chromosome

count. Right? They take the approach (if they take an approach at

all)of looking to solve their child's issue at hand.

Point is, I think we spend too much time on chromosome counts, when

it really does not matter in the long run. We are missing the gun

(so to speak...pardon the slang) when we ignore the real issues at

hand. The real issues are not who has more or less chromosomes in

this world, but what most parents worry about is they wonder if

their kid is going to be like every other typical kid. Society has

gravely hurt all of us by labeling our children as different. Yes,

people with Down Syndrome have a tendency towards certain typed of

health or developmental issues, BUT (and this is a big but)that does

not mean that they HAVE to have those problems commonly associated

with the syndrome. It is just a checklist, so to speak. For

instance, in my family collectively, we have more respiratory

issues. As a result, the gene overexpression (and that is what DS is)

lends towards my boy being more susceptible to respiratory

illnesses. I also want to add that gene overexpression works both

ways. In my family, we tend to want to " stand up for principles " .

Therefore, stubbornness or steadfastness is an overexpressed trait

in my son. Although some people may view this as a negative trait,

it can also be a very good trait to have. You see how this works?

Every trait that " we " have is " overexpressed " with my son. The good

news is that if you have a lot of really good familial traits and

relatively low disease traits, then you will have a good outcome.

Along with good news come the bad news. >>> If you have a lot of

undesirable traits in your family, then chances are, more often than

not, these traits will appear moreso in your child.

It helped me to sit down and talk to my husband. Together, we

determined what familial traits we had in each of our lines.

(Strikingly, a lot of similarities!) Anyway, then we collected the

information together and took a good look at our child(ren). We were

then able to honestly determine where more of his " issues " lie. We

honed in on hearing issues and respiratory issues for problems to

solve. As far as the good traits, we sit back and laugh now and

say, " this or that one takes after you. "

I hope this has not sounded harsh in any way. It was not meant to.

This is meant to be helpful in every way to all of you. But to cut

to the chase, at some point, each of us have finally reached the

point where we honed in on the problems and the joys. Perhaps this

method will enlighten new parents to get there much quicker. that

way, you can get back to really enjoying your new baby. <<< THAT is

where we ALL need to be.

All The Best!

- In MosaicDS , LDSAngel77@... wrote:

>

> I also want to throw in.................................. I think

it's one

> of the harder things we do as a GROUP, is have to inform a NEW

PARENT that we

> have no explanation for what their % means.............that it

basically means

> nothing............................. when it was their glimmer

of hope!

>

> I think we should be careful in how we approach it, cause most

parents are

> in that " sad " time when they ask this question....

>

> Angel

>

>

> In a message dated 3/5/2008 8:22:44 A.M. Mountain Standard Time,

> LDSAngel77@... writes:

>

> ....

>

> agreed on the explanation of mosaicism..........its what I was

attempting

> to

> say too!

>

> My son's blood showed 50% affected.................and he really

> struggles!!

> go figure!!

>

> Angel

>

>

> In a message dated 3/4/2008 10:52:13 P.M. Mountain Standard

Time,

> lifeisgood@... writes:

>

> Hi Everyone,

>

>

>

> I feel that the cell lines and their percentages are a very

misunderstood

> area. I’ve seen many people share their percentage of BLOOD

cells and

> correlate that percentage to hopeful outcomes for their child.

I hear about

> how a child has 65% typical cells and she is doing very well or

another

> child that has 85% normal cells and again doing very well.

However 96% of

> my son’s BLOOD cells have Trisomy 21 and he too is doing very

well. How do

> you explain this?

>

>

>

> What I seem to take away from the research I have done is that

there are

> many CELL LINES throughout the body, BLOOD cells, BRAIN cells,

BONE cells,

> SKIN cells, HEART cells, etc. and the very concept of

“Mosaic†is that ALL

> of these cell lines can each carry different percentages, some

totally

> affected or some completely unaffected….any combination. It

all depends

> on

> where the “error†or the “correction†occurred in the

creation of our

> child.

> If for instance the zygote had 47 chromosomes, and at some point

an error

> occurred (actually a correction) that dropped one of the

chromosomes, it

> would depend on what cell lines were created before this

occurred. Or let’s

> say, the zygote had the typical 46 chromosomes, and at some

point a division

> error occurred, causing the new cell with the 47 chromosomes to

begin

> copying from that point forward, however quite a bit of cell

development may

> have already occurred with the typical number of chromosomes,

before this

> event took place.

>

>

>

> It can be very confusing and I often get different answers from

different

> professionals. I have even had Dr. Pueschel personally tell me

that my son

> did not have Mosaicism, because the percentage of “typicalâ€

blood cells was

> not great enough (a sentiment shared by my pediatrician). I now

know this

> is completely false, and when I spoke with him at a seminar

months later

> (after my research) and I explained the above scenarios, he

seemed to

> recant and then defer to an “it just doesn’t matter that

it’s Mosaicâ€

> comment. I bring this up to encourage everyone to do their own

research.

> The Internet has been very helpful for me. I have had several

occasions

> where educating myself first and then getting the professionals

advice

> actually got more accomplished for my son than when I went in un-

educated.

> This is for medical and educational situations alike!

>

>

>

> Learning a little more about all this was a major contributor to

my husband

> and I not pursuing any other tests after his second blood test

confirmed

> the

> Mosaic diagnosis. We initially thought it would help us

“figure something

> out†pertaining to our son’s future, tell us what we could

expect. We were

> also looking for some answers to why our son has no medical

problems, why he

> has very few physical features and why he seems as though he may

not be

> cognitively disabled, especially with 96% of his BLOOD cells

affected with

> Trisomy 21!

>

>

>

> I cannot seem to find the answers that I am looking for! I

don’t know that

> I will, which is extremely hard for my personality type to

acceptJ. I

> personally still have much sadness 3 ½ years later. Every day

I feel so,

> so thankful to have my son in my life AND every day I wish that

he did not

> have MDS. In the end though for me, it has been my love for my

son that has

> gotten me through each day….another CELL line test will not

help facilitate

> my healing.

>

>

>

> Aloha,

>

>

>

> son to Aiden, 3 ½ w/MDS

>

>

>

> [Non-text portions of this message have been removed]

>

>

>

> Become a member of IMDSA today at http://www.imdsa.com

> *******************************************************

> Purchase your MDS awareness bracelet today!

http://www.imdsa.com/bracelets

>

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

*****

> Contact IMDSA Today at:

> IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-

LINK

>

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

> Share your story today! http://www.mosaicdownsyndrome.com

> *********************************************************

> To unsubscribe from this list, send e-mail to:

> MosaicDS-unsubscribeegroups

> *************************************************

> To visit the e-group website go to:

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

> *************************************************

>

[Guest guest]

Here in Atlanta, Georgia, doctors will tell you, " The DNA does not

change. " And they will NOT repeat a test. I persisted for 3 years on

this. Based on a 20 cell count, my son was diagnosed with 100%

Trisomy 21 DS. I moved to the country and I found a genetcicist to

listen to me. they repeated the test and lo and behold, I was

correct. he has 50% MDS. That for me was a far cry from 100%! There

is an 89% missed mosaicism when 7 /20 cells ONLY are looked at. That

is a big mistake in my eyes.

> >

> > My daughter was diagnosed by blood test as 25% MTDS at 2

> 1/2 months

> > old. We opted for a second test (denial) and had a skin biopsy

> done 20 % MTDS.

> > This test was traumatic and left a scar. I wish we had not done

it

> but it was

> > presented as an easy painless test. The labs used by our

> Children's

> > Hospital could not do the cheek scraping like we had hoped for.

> As you can see the

> > test results were not that much different in our case. We hope

> Rose is doing

> > well! and age 2 1/2 years old

> >

> >

> >

> >

> >

> >

> > In a message dated 3/2/2008 7:08:54 P.M. Eastern Standard Time,

> > suejohnson524@ writes:

> >

> >

> >

> >

> > I did have more than one test. I had only found out when my

> daughter was 10

> > months old. The doctors did not even believe the test and they

> suggested

> > having another one done. The first test showed 40% mds and 100%

> triple x

> > syndrome. The second test they did, they scraped skin cells from

> the inside of her

> > mouth and tested over 500 cells. The second test was called a

> (fish test I

> > think) it came back with 33% mds and 98% triple x. How is Rose

> doing as far as

> > the leukemia? I am praying she is doing well.

> >

> > Sue

> >

> > Question about blood tests for MDS %

> >

> > Hi Everyone,

> > Thank you for your lovely messages...it can be a bit daunting

> joining a

> > group like this but you have all been great.

> >

> > My daughter Rose (9 months old) was diagnosed with 66% MDS when

> she was

> > around three weeks old. At that time she was being treated for

> > leukaemia and a geneticist told us that it may not be as high as

> 66%

> > becuase of her blood disorder at that time. I don't think it is

as

> high

> > as 66% because she seems to behave like any other baby.

> >

> > I was wondering if any of you guys have had more than one test

> carried

> > out to determine the MDS percentage and what was the outcome. Do

> you

> > think it is of any use to get another test done? Do the results

> vary

> > much with each test?

> >

> > I'd love to hear your thoughts.... thanks.

> > Sinead ( & Rose)

> >

> > __________________________________________________________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

> > _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_

> > (http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ)

> >

> >

[Guest guest]

Hi ,

My son, Aiden does have MDS, with 96% of his blood cells having 3, 21st

chromosomes and the other 4% of his blood cells having the typical 2, 21st

chromosomes. I hope this answers your question?

Aloha,

Mom to Aiden, 3 ½ MDS

[Guest guest]

Thanks it does ..

Re: Question about blood tests for MDS %

Hi ,

My son, Aiden does have MDS, with 96% of his blood cells having 3, 21st

chromosomes and the other 4% of his blood cells having the typical 2, 21st

chromosomes. I hope this answers your question?

Aloha,

Mom to Aiden, 3 ½ MDS

[Guest guest]

Kristy,

I will try to participate in this meeting. (if at all possible). But

I am just going by what Dr. Flannery (Augusta, GA) told us.He

is the doc. (?) I think his words were that it was not a good

indicator of skin cells. Nonetheless, he refused to do one despite

the fact that we wanted one.

> >

> > My daughter was diagnosed by blood test as 25% MTDS at 2

> 1/2 months

> > old. We opted for a second test (denial) and had a skin biopsy

> done 20 % MTDS.

> > This test was traumatic and left a scar. I wish we had not done

it

> but it was

> > presented as an easy painless test. The labs used by our

> Children's

> > Hospital could not do the cheek scraping like we had hoped for.

> As you can see the

> > test results were not that much different in our case. We hope

> Rose is doing

> > well! and age 2 1/2 years old

> >

> >

> >

> >

> >

> >

> > In a message dated 3/2/2008 7:08:54 P.M. Eastern Standard Time,

> > suejohnson524@ writes:

> >

> >

> >

> >

> > I did have more than one test. I had only found out when my

> daughter was 10

> > months old. The doctors did not even believe the test and they

> suggested

> > having another one done. The first test showed 40% mds and 100%

> triple x

> > syndrome. The second test they did, they scraped skin cells from

> the inside of her

> > mouth and tested over 500 cells. The second test was called a

> (fish test I

> > think) it came back with 33% mds and 98% triple x. How is Rose

> doing as far as

> > the leukemia? I am praying she is doing well.

> >

> > Sue

> >

> > Question about blood tests for MDS %

> >

> > Hi Everyone,

> > Thank you for your lovely messages...it can be a bit daunting

> joining a

> > group like this but you have all been great.

> >

> > My daughter Rose (9 months old) was diagnosed with 66% MDS when

> she was

> > around three weeks old. At that time she was being treated for

> > leukaemia and a geneticist told us that it may not be as high as

> 66%

> > becuase of her blood disorder at that time. I don't think it is

as

> high

> > as 66% because she seems to behave like any other baby.

> >

> > I was wondering if any of you guys have had more than one test

> carried

> > out to determine the MDS percentage and what was the outcome. Do

> you

> > think it is of any use to get another test done? Do the results

> vary

> > much with each test?

> >

> > I'd love to hear your thoughts.... thanks.

> > Sinead ( & Rose)

> >

> > __________________________________________________________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

> > _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_

> > (http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ)

> >

> >

[Guest guest]

I forgot to add one more thing (and I am not trying to be

argumentative, BUT...)>>> It is also customary to do 20-cell counts

for blood tests and we already know how grossly inaccurate those

are. Nonetheless, doctors still think it is okay and claim it to be

accurate.

> >

> > My daughter was diagnosed by blood test as 25% MTDS at 2

> 1/2 months

> > old. We opted for a second test (denial) and had a skin biopsy

> done 20 % MTDS.

> > This test was traumatic and left a scar. I wish we had not done

it

> but it was

> > presented as an easy painless test. The labs used by our

> Children's

> > Hospital could not do the cheek scraping like we had hoped for.

> As you can see the

> > test results were not that much different in our case. We hope

> Rose is doing

> > well! and age 2 1/2 years old

> >

> >

> >

> >

> >

> >

> > In a message dated 3/2/2008 7:08:54 P.M. Eastern Standard Time,

> > suejohnson524@ writes:

> >

> >

> >

> >

> > I did have more than one test. I had only found out when my

> daughter was 10

> > months old. The doctors did not even believe the test and they

> suggested

> > having another one done. The first test showed 40% mds and 100%

> triple x

> > syndrome. The second test they did, they scraped skin cells from

> the inside of her

> > mouth and tested over 500 cells. The second test was called a

> (fish test I

> > think) it came back with 33% mds and 98% triple x. How is Rose

> doing as far as

> > the leukemia? I am praying she is doing well.

> >

> > Sue

> >

> > Question about blood tests for MDS %

> >

> > Hi Everyone,

> > Thank you for your lovely messages...it can be a bit daunting

> joining a

> > group like this but you have all been great.

> >

> > My daughter Rose (9 months old) was diagnosed with 66% MDS when

> she was

> > around three weeks old. At that time she was being treated for

> > leukaemia and a geneticist told us that it may not be as high as

> 66%

> > becuase of her blood disorder at that time. I don't think it is

as

> high

> > as 66% because she seems to behave like any other baby.

> >

> > I was wondering if any of you guys have had more than one test

> carried

> > out to determine the MDS percentage and what was the outcome. Do

> you

> > think it is of any use to get another test done? Do the results

> vary

> > much with each test?

> >

> > I'd love to hear your thoughts.... thanks.

> > Sinead ( & Rose)

> >

> > __________________________________________________________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

> > _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_

> > (http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ)

> >

> >