Re: Hi. (when best time to connect families w/ sup...

[Guest guest]

I know for me it is a lack of understanding. My daughter is on the Nutrivene D vitamins and it took us 3 year to decide to do that! I have enjoyed this group so much because of the openness of conversation and frankness. I will admit all the information on what to give and how to figure it out and what not give is overwhelming. I glean what I can and move on. Being Open minded is so important when it comes to our kiddos. I bet most of those people just didn't get it and those that might don't understand it all.

[Guest guest]

That's what we all do. I know that no one gets it all initally..... You just cant. Theres too much info, and this is new territory for most of us. But we get on the merry go round, and begin the journey. As we understand more, we can learn more. It just takes time, and patience.

Hugs,

-- Re: Hi. (when best time to connect families w/ sup...

I know for me it is a lack of understanding. My daughter is on the Nutrivene D vitamins and it took us 3 year to decide to do that! I have enjoyed this group so much because of the openness of conversation and frankness. I will admit all the information on what to give and how to figure it out and what not give is overwhelming. I glean what I can and move on. Being Open minded is so important when it comes to our kiddos. I bet most of those people just didn't get it and those that might don't understand it all.

[Guest guest]

I think my take on this is "respect " . That we respect others choices . If a parent decides that vitamins are not for their child then we must respect that decision. I think that's what got to me from the start with all this pro vitamin anti vitamin stuff. I *know* this is not true for all people who are anti -vitamin but I personally came across a lot of these people who accused me of putting my son at risk by giving him vitamins and said way more hurtful things than that !! There was No respect for my decision to be pro vitamin at all !! Now as I say that has not been the case for everyone I have met who do not give vitamins !! Some were amazing , we exchanged viewpoints , agreed to differ and respected each others decisions . It is always implied that as parents we are ALL working towards doing our best for our kids , no matter what we think that is .I think the approach that suggests is correct . We offer information , if welcome we offer more. If we see mis conceptions are the problem we could try to correct these in a respectful non patronizing manner. Then if its just not welcome we move on .

If we are Really passionate about being pro vitamin then maybe we should work towards getting research up and running that prove once and for all that vitamins work . A longitudinal ( sp?) study would be necessary in my opinion !! Of course that's much easier said than done . We are all parents with our hands very full . We do what we can , some more than others. We all know that vitamins are only part of the jigsaw puzzle. We still need speech therapy OT PT specialist educational interventions and sensory integration work to name a but a few !!!

Raising Kids with Downs Syndrome is full of hard decisions , we all know that . As parents we know we all try to what's best for our kids!!

Sometimes its hard to do right for doing wrong and what's "right" sometimes changes with the years ( and months ) . We all do what we can . We all feel guilty that we could should be doing more !! ( or is that just me ?? )

Re: Hi. (when best time to connect families w/ sup...

I know for me it is a lack of understanding. My daughter is on the Nutrivene D vitamins and it took us 3 year to decide to do that! I have enjoyed this group so much because of the openness of conversation and frankness. I will admit all the information on what to give and how to figure it out and what not give is overwhelming. I glean what I can and move on. Being Open minded is so important when it comes to our kiddos. I bet most of those people just didn't get it and those that might don't understand it all.

[Guest guest]

In a message dated 7/25/06 10:47:58 AM, jules@... writes:

I remember seeing something long time back about it softening the features and such.   I dunno, think that's BS.   I think that it was something used to play on parents to get em to use it.   That part really bothers me a lot.   But I do believe there are very marked biochemical differences in our kids and other "typical" kids.   So supplementing and routine bloodwork to monitor it makes total sense to me.

 

This was one of the things Dixie used to state back in the early 1990's. Dixie was on Dateline in the fall of 1995 around the time our Olivia was born and then in early 1996 is when she and Rob P. at International Nutrition started to distribute NTV-d.

I was intimately involved in those early years and Dixie's personal drive create some challenges. She did HOWEVER bring nutritional intervention to many people and it HAS improved many children's health to say the least. We are all doing our best and the understanding of how DS works biochemically needs more research. I see some more promising reseach mostly because their is more funding for Alzheimers and it will help our kiddos.

We all keep pressing on, asking hard questions and praying for wisdom to do what is right for our children. I know that I have changed Olivia's protocal several times based on some innovative testing (Electro Dermal Screening) and tried several restrictive diets. I compare my results and make adjustments when needed. It is a balancing act and I feel blessed to have you all to share with me what works, so I can continue to make the necessary changes for Olivia. She in the end will benefit from all your hard work and progress.

joan

[Guest guest]

In a message dated 7/25/06 11:49:54 AM, cmcbetty@... writes:

Now, after surviving countless prolonged hospital stays, therapies of every kind, more M-team meetings than I even want to remember including a few arbitrations with lawyers present, my DH has a short fuse for anything that could possibly, even remotely, adversely affect his "boy." That's why discussions on places like this board always have the tendency to get hot -- We're fighters for our kids like no other. Betty in TN

>

He sounds like my husband. Yes we learn to be assertive or else our kids suffer.

Joan

[Guest guest]

Well said !! Even though this list has a good number of it's members who are really enthusiatic about supplements, I would hope those who don't use them, for whatever reason, are NEVER made to feel that they are someone lesser parents for their choice. We are ALL doing what is best for our kids. And our kids are not all the same. Despite what some say about NVD, it does NOT work for everyone. I am not the only one who started out with it and dropped it due to lack of progress on it. I am very happy for those that are doing great on the NVD. :-) I wish were that easy. ;-) But alas... it didn't work that way. And for other parents, any kind of supplement might not work. 's best friend doesn't use anything, but she does eat a very healthy diet and she does just as well as and is twice as

healthy. Long term... who knows??? At any rate, let's be careful with how you phrase your love of supplements so as not to put off other parents who have chosen not to use them. They are not less smart, they don't love their children any less and many have left the more pro-vitamin lists because they simply become tired of the guilt heaped on them for not using. Other then educated guesses, we have nothing to back up the use of supplements. No studies. The other *could* turn out to be the *wiser*ones... who knows?? Stranger things have happened in this life. <g> We are all searching for the best. If we all did the same, it would take LOTS longer to get answers. :-) So let's not makes parents who chose differently feel like they are somehow not doing their best here! This is a wonderful list with loads of info flowing..... lets not do anything to stop that. :-) We NEED all the

parents here and each opinion is valued. It was one of the motivations for starting this list in the first place. Sims <csims@...> wrote: I think my take on this is "respect " . That we respect others choices . If a parent decides that vitamins are not for their child then we must respect that decision. I think that's what got to me from the start with all this pro vitamin anti vitamin

stuff. I *know* this is not true for all people who are anti -vitamin but I personally came across a lot of these people who accused me of putting my son at risk by giving him vitamins and said way more hurtful things than that !! There was No respect for my decision to be pro vitamin at all !! Now as I say that has not been the case for everyone I have met who do not give vitamins !! Some were amazing , we exchanged viewpoints , agreed to differ and respected each others decisions . It is always implied that as parents we are ALL working towards doing our best for our kids , no matter what we think that is .I think the approach that suggests is correct . We offer information , if welcome we offer more. If we see mis conceptions are the problem we could try to correct these in a respectful non patronizing manner.

Then if its just not welcome we move on . If we are Really passionate about being pro vitamin then maybe we should work towards getting research up and running that prove once and for all that vitamins work . A longitudinal ( sp?) study would be necessary in my opinion !! Of course that's much easier said than done . We are all parents with our hands very full . We do what we can , some more than others. We all know that vitamins are only part of the jigsaw puzzle. We still need speech therapy OT PT specialist educational interventions and sensory integration work to name a but a few !!! Raising Kids with Downs Syndrome is full of hard decisions , we all know that . As

parents we know we all try to what's best for our kids!! Sometimes its hard to do right for doing wrong and what's "right" sometimes changes with the years ( and months ) . We all do what we can . We all feel guilty that we could should be doing more !! ( or is that just me ?? ) .

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS. My problem is not how I look. It's how you see me. __________________________________________________

[Guest guest]

I appreciate your saying this. We also had our son on the recommended

supplements, but because he became critically ill had to take him off. I don't

remember seeing any difference in his cognitive abilities while he was on them,

nor any difference in facial features... although Jeff has always had more

" unaffected " facial features. I don't think, like you, that whether you have

your child on supplements has anything to do with who you are as a parent. I

tend to believe all of us Ds parents try to make the best and wisest decisions

that we can for our children, and we should respect that among ourselves. I was

around back in the '80 when Dixie and a lot of others were going back and forth

very heatedly over this issue. A lot of people got hurt. It was amazing to

watch the ugly emails flying back and forth. Why do we always want to push our

thinking and view of things onto everyone else. We just might be wrong in the

end. I will never try to impact parents to NOT put their child on supplements.

That would be wrong too. Thank you for addressing this. Betty in TN, Mom to

the Coolest 17-yr-old boy I've ever met!

>

> From: Carol in IL <ps1272000@...>

> Date: 2006/07/25 Tue AM 10:56:54 EDT

> Down Syndrome Treatment

> Subject: Re: Hi. (when best time to connect

families w/ sup...

>

> Well said !!

>

> Even though this list has a good number of it's members who are really

enthusiatic about supplements, I would hope those who don't use them, for

whatever reason, are NEVER made to feel that they are someone lesser parents for

their choice.

>

> We are ALL doing what is best for our kids. And our kids are not all the

same. Despite what some say about NVD, it does NOT work for everyone. I am not

the only one who started out with it and dropped it due to lack of progress on

it.

>

> I am very happy for those that are doing great on the NVD. :-) I wish

were that easy. ;-) But alas... it didn't work that way. And for other

parents, any kind of supplement might not work.

>

> 's best friend doesn't use anything, but she does eat a very

healthy diet and she does just as well as and is twice as healthy.

Long term... who knows???

>

> At any rate, let's be careful with how you phrase your love of supplements

so as not to put off other parents who have chosen not to use them. They are not

less smart, they don't love their children any less and many have left the more

pro-vitamin lists because they simply become tired of the guilt heaped on them

for not using. Other then educated guesses, we have nothing to back up the use

of supplements. No studies. The other *could* turn out to be the *wiser*ones...

who knows?? Stranger things have happened in this life. <g> We are all searching

for the best. If we all did the same, it would take LOTS longer to get answers.

:-)

>

> So let's not makes parents who chose differently feel like they are somehow

not doing their best here! This is a wonderful list with loads of info

flowing..... lets not do anything to stop that. :-) We NEED all the parents

here and each opinion is valued.

>

> It was one of the motivations for starting this list in the first place.

>

> Sims <csims@...> wrote:

> I think my take on this is " respect " . That we respect others

choices . If a parent decides that vitamins are not for their child then we

must respect that decision. I think that's what got to me from the start

with all this pro vitamin anti vitamin stuff. I *know* this is not true for

all people who are anti -vitamin but I personally came across a lot of these

people who accused me of putting my son at risk by giving him vitamins and

said way more hurtful things than that !! There was No respect for my decision

to be pro vitamin at all !! Now as I say that has not been the case for

everyone I have met who do not give vitamins !! Some were amazing , we

exchanged viewpoints , agreed to differ and respected each others decisions

.. It is always implied that as parents we are ALL working towards doing our

best for our kids , no matter what we think that is .I think the approach that

suggests is correct . We offer information ,

> if welcome we offer more. If we see mis conceptions are the problem we

could try to correct these in a respectful non patronizing manner. Then if its

just not welcome we move on .

>

> If we are Really passionate about being pro vitamin then maybe we should

work towards getting research up and running that prove once and for all that

vitamins work . A longitudinal ( sp?) study would be necessary in my opinion

!! Of course that's much easier said than done . We are all parents with our

hands very full . We do what we can , some more than others. We all know that

vitamins are only part of the jigsaw puzzle. We still need speech therapy OT PT

specialist educational interventions and sensory integration work to name a

but a few !!!

>

> Raising Kids with Downs Syndrome is full of hard decisions , we all know

that . As parents we know we all try to what's best for our kids!!

> Sometimes its hard to do right for doing wrong and what's " right "

sometimes changes with the years ( and months ) . We all do what we can . We

all feel guilty that we could should be doing more !! ( or is that just me

?? )

>

>

>

>

>

> .

>

>

>

>

>

> Carol in IL

> Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma,

subglottal stenosis, chronic constipation ( cured now ) and DS.

>

> My problem is not how I look. It's how you see me.

>

>

> __________________________________________________

>

[Guest guest]

i do not know... from what i have seen those dear babies with ds while in early on program with Casey. everyone was impressed with how Casey was doing, if comparing to another baby with ds. i do not like to brag, but my husband and i can sense the difference with supplement, and without supplement. Hubby and I noticed foggy eyes or dazed eyes in them while our was clear and alert. umm... Casey and other babies developed almost similar, but Casey was like one step ahead of them, sometimes a very small step ahead, not much. although teacher had asked the information about the vitamins..

those babies even ended up in hospitals with pneumonia, or ear infections. not Casey. So... again maybe that is how i reacted.... those babies deserve the best. Really, their moms are so wonderful and well intended. I love being around them, tho.

Casey always asked for his vitamins at nights as if he knew he needs them, or is it a habit he develop with??

Rod, my husband, and I agreed that american sign language is an essential tool for us, therefore supplements is an essential tool for people with ds. Not providing supplements to people with ds is depriving them, as not allowing american sign language to deafies is depriving them. i have known deafies with limited communications are considered landing in no man island (isolation). Although I have know another deafies who does well in the hearing world. So, i am learning about some people with ds are biochemically a little different ... mean they need different things, other than supplements...

So, here is my two cents, grinning... kk

-- Re: Hi. (when best time to connect families w/ sup...

Well said !!

Even though this list has a good number of it's members who are really enthusiatic about supplements, I would hope those who don't use them, for whatever reason, are NEVER made to feel that they are someone lesser parents for their choice.

We are ALL doing what is best for our kids. And our kids are not all the same. Despite what some say about NVD, it does NOT work for everyone. I am not the only one who started out with it and dropped it due to lack of progress on it.

I am very happy for those that are doing great on the NVD. :-) I wish were that easy. ;-) But alas... it didn't work that way. And for other parents, any kind of supplement might not work.

's best friend doesn't use anything, but she does eat a very healthy diet and she does just as well as and is twice as healthy. Long term... who knows???

At any rate, let's be careful with how you phrase your love of supplements so as not to put off other parents who have chosen not to use them. They are not less smart, they don't love their children any less and many have left the more pro-vitamin lists because they simply become tired of the guilt heaped on them for not using. Other then educated guesses, we have nothing to back up the use of supplements. No studies. The other *could* turn out to be the *wiser*ones... who knows?? Stranger things have happened in this life. <g> We are all searching for the best. If we all did the same, it would take LOTS longer to get answers. :-)

So let's not makes parents who chose differently feel like they are somehow not doing their best here! This is a wonderful list with loads of info flowing..... lets not do anything to stop that. :-) We NEED all the parents here and each opinion is valued.

It was one of the motivations for starting this list in the first place. Sims <csims@...> wrote:

I think my take on this is "respect " . That we respect others choices . If a parent decides that vitamins are not for their child then we must respect that decision. I think that's what got to me from the start with all this pro vitamin anti vitamin stuff. I *know* this is not true for all people who are anti -vitamin but I personally came across a lot of these people who accused me of putting my son at risk by giving him vitamins and said way more hurtful things than that !! There was No respect for my decision to be pro vitamin at all !! Now as I say that has not been the case for everyone I have met who do not give vitamins !! Some were amazing , we exchanged viewpoints , agreed to differ and respected each others decisions . It is always implied that as parents we are ALL working towards doing our best for our kids , no matter what we think that is .I think the approach that suggests is correct . We offer information , if welcome we offer more. If we see mis conceptions are the problem we could try to correct these in a respectful non patronizing manner. Then if its just not welcome we move on .

If we are Really passionate about being pro vitamin then maybe we should work towards getting research up and running that prove once and for all that vitamins work . A longitudinal ( sp?) study would be necessary in my opinion !! Of course that's much easier said than done . We are all parents with our hands very full . We do what we can , some more than others. We all know that vitamins are only part of the jigsaw puzzle. We still need speech therapy OT PT specialist educational interventions and sensory integration work to name a but a few !!!

Raising Kids with Downs Syndrome is full of hard decisions , we all know that . As parents we know we all try to what's best for our kids!!

Sometimes its hard to do right for doing wrong and what's "right" sometimes changes with the years ( and months ) . We all do what we can . We all feel guilty that we could should be doing more !! ( or is that just me ?? )

..

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

__________________________________________________

[Guest guest]

Why would you expect a difference in cognitive abilities?

All TNI is for is to supplement where our kids lack. Made to bring their biochemistry more to a normal state. That is something you see over the long haul in overall better heath.

I remember seeing something long time back about it softening the features and such. I dunno, think that's BS. I think that it was something used to play on parents to get em to use it. That part really bothers me a lot. But I do believe there are very marked biochemical differences in our kids and other "typical" kids. So supplementing and routine bloodwork to monitor it makes total sense to me.

Hugs,

-- Re: Hi. (when best time to connect families w/ sup...> > Well said !!> > Even though this list has a good number of it's members who are really enthusiatic about supplements, I would hope those who don't use them, for whatever reason, are NEVER made to feel that they are someone lesser parents for their choice.> > We are ALL doing what is best for our kids. And our kids are not all the same. Despite what some say about NVD, it does NOT work for everyone. I am not the only one who started out with it and dropped it due to lack of progress on it. > > I am very happy for those that are doing great on the NVD. :-) I wish were that easy. ;-) But alas... it didn't work that way. And for other parents, any kind of supplement might not work.> > 's best friend doesn't use anything, but she does eat a very healthy diet and she does just as well as and is twice as healthy. Long term... who knows??? > > At any rate, let's be careful with how you phrase your love of supplements so as not to put off other parents who have chosen not to use them. They are not less smart, they don't love their children any less and many have left the more pro-vitamin lists because they simply become tired of the guilt heaped on them for not using. Other then educated guesses, we have nothing to back up the use of supplements. No studies. The other *could* turn out to be the *wiser*ones... who knows?? Stranger things have happened in this life. <g> We are all searching for the best. If we all did the same, it would take LOTS longer to get answers. :-)> > So let's not makes parents who chose differently feel like they are somehow not doing their best here! This is a wonderful list with loads of info flowing..... lets not do anything to stop that. :-) We NEED all the parents here and each opinion is valued.> > It was one of the motivations for starting this list in the first place.> > Sims <csims@...> wrote:> I think my take on this is "respect " . That we respect others choices . If a parent decides that vitamins are not for their child then we must respect that decision. I think that's what got to me from the start with all this pro vitamin anti vitamin stuff. I *know* this is not true for all people who are anti -vitamin but I personally came across a lot of these people who accused me of putting my son at risk by giving him vitamins and said way more hurtful things than that !! There was No respect for my decision to be pro vitamin at all !! Now as I say that has not been the case for everyone I have met who do not give vitamins !! Some were amazing , we exchanged viewpoints , agreed to differ and respected each others decisions . It is always implied that as parents we are ALL working towards doing our best for our kids , no matter what we think that is .I think the approach that suggests is correct . We offer i! nformation ,> if welcome we offer more. If we see mis conceptions are the problem we could try to correct these in a respectful non patronizing manner. Then if its just not welcome we move on . > > If we are Really passionate about being pro vitamin then maybe we should work towards getting research up and running that prove once and for all that vitamins work . A longitudinal ( sp?) study would be necessary in my opinion !! Of course that's much easier said than done . We are all parents with our hands very full . We do what we can , some more than others. We all know that vitamins are only part of the jigsaw puzzle. We still need speech therapy OT PT specialist educational interventions and sensory integration work to name a but a few !!!> > Raising Kids with Downs Syndrome is full of hard decisions , we all know that . As parents we know we all try to what's best for our kids!! > Sometimes its hard to do right for doing wrong and what's "right" sometimes changes with the years ( and months ) . We all do what we can . We all feel guilty that we could should be doing more !! ( or is that just me ?? ) > > > > > > .> > > > > > Carol in IL > Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.> > My problem is not how I look. It's how you see me.> > > __________________________________________________>

[Guest guest]

Well, when we first put Jeff on, that was the BIG talk going on -- how cognitive

abilities improved, as well as facial features. This was back in the 1980's

when Jeff was a toddler. There was even a chiropractor my husband went to for

his back, and Jeff and I went along, who asked me if I had looked into the

nutritional supplements for children with Down syndrome because they were really

noticing surprising results relating to cognitive improvement and so on. That's

where all the talk centered around back then. Now I've noticed more nutritional

issues have taken over. Betty in TN

>

> From: " ~ ~ " <jules@...>

> Date: 2006/07/25 Tue AM 11:43:07 EDT

> <Down Syndrome Treatment >

> Subject: Re: Re: Hi. (when best time to connect

families w/ sup...

>

>

[Guest guest]

Yes, I saw all the old stuff. That just really really bugs me. Its like the idea of supplementing, and the wisdom behind it wasn't enough, needed that WOW factor. Did far more harm to the cause then it ever did good.

Think that has a lot to do with there being factions pro and con..... Which boggles my mind. Boy hind sight is 20/20 hu. Will take us a century to get past that kinda damage, if ever.

Hugs,

-- Re: Re: Hi. (when best time to connect families w/ sup...> >

[Guest guest]

Well, I'll tell you one thing I figured out way back then. We parents of Ds

children are the most outspoken and intimidating people on the earth. It comes

from being such voracious advocates of our kids. My husband was the most

laid-back old country boy I've ever known before Jeff was born. Now, after

surviving countless prolonged hospital stays, therapies of every kind, more

M-team meetings than I even want to remember including a few arbitrations with

lawyers present, my DH has a short fuse for anything that could possibly, even

remotely, adversely affect his " boy. " That's why discussions on places like

this board always have the tendency to get hot -- We're fighters for our kids

like no other. Betty in TN

>

> From: " ~ ~ " <jules@...>

> Date: 2006/07/25 Tue PM 12:29:44 EDT

> <Down Syndrome Treatment >

> Subject: Re: Re: Hi. (when best time to connect

families w/ sup...

>

>

[Guest guest]

Your right!!! We have to be.

-- Re: Re: Hi. (when best time to connect families w/ sup...> >