just a thought

October 17, 1999

Stacie, I agree with you 100%. I hope I did not sound like I was blaming my

son's ADHD on RSS. I just think that he was more likely to have it because

of the hypoglycemia. Maybe it made it a little more involved. Maybe he

would have been like that anyway. We will never know. But I DO know that

there are factors that can be attributed to developing a condition and

hypoglycemia is one of them. I have NEVER said or thought that just because

Max has RSS, he has ADHD, gastro- intestinal problems, or even flat feet.

But remember, a genetic syndrome is a combination of characteristics, some

unique to that condition, and some just the right combination to be able to

apply that label.

I am sure I have said too much now. I know I am rambling. The field of

learning difficulties (Yes, I say difficulties instead of disabilities) is

so complex and we will probably never know the exact cause of so many

conditions.

That is my 2 cents' worth!

Jodi

Just a thought

>From: tclfam@...

>

>Hi, I'm hoping that I either don't sound like an idiot or

>insensitive.......

>

>I was wondering if maybe some of the different things our kids are

>experiencing are not necessarily due to RSS. I mean, all kids with or

>without RSS can have emotional, social, learning, etc. disabilities. I

>know of others with ADHD, slow in learning, etc. and do not have RSS.

>Sometimes I wonder if we point fingers at RSS as a way to blame

>something rather than just accepting that our kids are who they are and

>given to us in their own special and unique package.

>

>Like they say " all " kids are different and have different quirks,

>illnesses, allergies, habits, etc. that have nothing to do with any

>syndrome. It's just who they are. Just my opinion.

>

>Stacie

> & 's mom

>

>>

October 17, 1999

Dear Jodi and Stacie,

I wanted to support both of you as I think that you both have extremely

valid points to make.

When I was doing some research a couple of years ago, I was wondering why

so many of the early papers included cognitive delays (and even mental

retardation) as a characteristic of RSS. These were the papers written

in the 70's, as well as some much earlier ones. Upon discussion of this

with a well-respected doctor, (in fact, he was the president of the FL

ped endo society a few years back ), he thought this was due to the lack

of nutrition that children had received 30 -40 years ago. As Jodi,

stated, the body will do what it must to support life functions, even at

the expense of the brain. I have heard in from others (not just Dr.

Harbison) that hypoglycemia can result in learning delays.

As we know, with each passing year, there is more and more information

out there. Back then, no one thought about augmenting nutrition with

buttons or nG feedings. We are fortunate that our kids have past medical

experience to benefit from. It is amazing how much has happened in just

the past few years. was asking if I regretted not having a

button in . If that was presented as an option to us when he was

younger, who knows, we might be in a very different situation with him

now. We each have to remember that we all individually want what is best

for our children, and different families can tolerate different things.

We also have to remember that there are other members in our families,

with needs too. It's a juggle at best for all of us.

Now, with Stacie, I think that what you said is so true also. It is so

easy to lump things together with RSS or attribute it to RSS, sometimes

without realizing it. I remember when was first diagnosed, we

really wanted to discount what they were saying, because of

characteristics of my husband's family. All his male forbears have

clinodactyly, and broad foreheads (but they also range from 6'1.5 " to

6'7 " )! It was just the way they presented things to us that made it very

hard to accept at first. The second opinion we got a few months later

sealed it for us, however. It is very easy to say can't hit a

baseball because he has low muscle tone due to RSS. It's a lot harder to

say that he can't hit a baseball because he is not coordinated!

I think that both of you spoke to an audience that can agree and be

comforted with what each of you had to say. It is nice to know that if

your child has learning problems, you are not alone. On the other hand,

just because RSS is the diagnosis, it doesn't mean that they can't be

academically gifted.

Jodi, I really value your input to these discussions. When I read your

e-mail, I didn't think you were blaming ADHD on RSS. I understand the

hypoglycemia connection. It is rare to find moms and dads with older RSS

kids to give the rest of us encouragement and alert us to what may lie

ahead. For me, a real big issue is early puberty. I don't know why it

freaks me out so much, but it really does. Asking you about Max now, I

guess, is my way of preparing myself for what may be happening a few

years down the road.

Anyway, thanks a bunch to all who write. It is so great to know we are

not alone!

___________________________________________________________________

Get the Internet just the way you want it.

Free software, free e-mail, and free Internet access for a month!

Try Juno Web: http://dl.www.juno.com/dynoget/tagj.

October 17, 1999

, what a wonderful message you posted! It really touched me. And

now I want to respond to a couple of things you said:

First of all, I spoke to Dr. Silver himself when Max was a baby. I had read

his articles on RSS and felt that his listing mental retardation(MR) as a

characteristic was unfair. I had met too many children who showed no signs

of MR to let that be a major characteristic. I explained the

nutrition/hypoglycemia concept to him. I also made him listen about the

earlier theory that children who walk and talk late are automatically

suspected of having MR. I strongly disagreed with that statement. After a

half hour of going over this, he agreed that he had used early

misinformation to jump to that conclusion. To my surprise, he began to

change all of his papers to omit that theory!!! He was a wonderful man with

whom I corresponded for a couple of years until he passed away. It was a

surprise, as he had never mentioned any health problems. But I was so happy

to have " met " him and been able to change the literature just a little bit.

And I understand your fear of early puberty. I was and am terrified of it.

To me, that means that any chance of achieving extra height is thrown out

the window. I look at Max who is just 45 " and the thought of having him

stop growing right now is just something I can't put into words. This is

why we went ahead with the Zoladex. We had no choice if we were going to

give him any more of a chance to grow taller. And you know there is still

no guarantee that he will make or break that 5' mark. We are all taking a

" chance " with this gh therapy. Dr. Harbison is so positive about all of

this, but these are not HER children biologically. She does not know the

pain we live with each and every day. She does not go to sleep worrying

about how the world will handle our children if they are small. It is

harder for boys than girls, too. So worry all you want. We can support

each other.

With Max being one of the oldest here, it is sometimes lonely not being able

to ask the parent of another 11 or 12 year old. But you all give me so much

more than I ever imagined. And being able to share my experiences with you

helps so much!

Thank you.

Jodi

Re: Just a thought

>

>Dear Jodi and Stacie,

>

>I wanted to support both of you as I think that you both have extremely

>valid points to make.

>

>When I was doing some research a couple of years ago, I was wondering why

>so many of the early papers included cognitive delays (and even mental

>retardation) as a characteristic of RSS. These were the papers written

>in the 70's, as well as some much earlier ones. Upon discussion of this

>with a well-respected doctor, (in fact, he was the president of the FL

>ped endo society a few years back ), he thought this was due to the lack

>of nutrition that children had received 30 -40 years ago. As Jodi,

>stated, the body will do what it must to support life functions, even at

>the expense of the brain. I have heard in from others (not just Dr.

>Harbison) that hypoglycemia can result in learning delays.

>

>As we know, with each passing year, there is more and more information

>out there. Back then, no one thought about augmenting nutrition with

>buttons or nG feedings. We are fortunate that our kids have past medical

>experience to benefit from. It is amazing how much has happened in just

>the past few years. was asking if I regretted not having a

>button in . If that was presented as an option to us when he was

>younger, who knows, we might be in a very different situation with him

>now. We each have to remember that we all individually want what is best

>for our children, and different families can tolerate different things.

>We also have to remember that there are other members in our families,

>with needs too. It's a juggle at best for all of us.

>

>Now, with Stacie, I think that what you said is so true also. It is so

>easy to lump things together with RSS or attribute it to RSS, sometimes

>without realizing it. I remember when was first diagnosed, we

>really wanted to discount what they were saying, because of

>characteristics of my husband's family. All his male forbears have

>clinodactyly, and broad foreheads (but they also range from 6'1.5 " to

>6'7 " )! It was just the way they presented things to us that made it very

>hard to accept at first. The second opinion we got a few months later

>sealed it for us, however. It is very easy to say can't hit a

>baseball because he has low muscle tone due to RSS. It's a lot harder to

>say that he can't hit a baseball because he is not coordinated!

>

>I think that both of you spoke to an audience that can agree and be

>comforted with what each of you had to say. It is nice to know that if

>your child has learning problems, you are not alone. On the other hand,

>just because RSS is the diagnosis, it doesn't mean that they can't be

>academically gifted.

>

>Jodi, I really value your input to these discussions. When I read your

>e-mail, I didn't think you were blaming ADHD on RSS. I understand the

>hypoglycemia connection. It is rare to find moms and dads with older RSS

>kids to give the rest of us encouragement and alert us to what may lie

>ahead. For me, a real big issue is early puberty. I don't know why it

>freaks me out so much, but it really does. Asking you about Max now, I

>guess, is my way of preparing myself for what may be happening a few

>years down the road.

>

>Anyway, thanks a bunch to all who write. It is so great to know we are

>not alone!

>

>___________________________________________________________________

>Get the Internet just the way you want it.

>Free software, free e-mail, and free Internet access for a month!

>Try Juno Web: http://dl.www.juno.com/dynoget/tagj.

>

>>

October 17, 1999

Thanks for your comments. As usual, someone makes very valid and

informative points!!!! I sure learn alot from this list and hopefully will

be able to help someone else in the future. Jodi, I really, really hope I

didn't sound argumentive. I look forward to hearing more about Max so that I

can learn even more from you and everyone else. is only 2 1/2 and I'm

far from experienced when it comes to RSS and what lies ahead. Please

continue to keep us all updated!

Thanks again!

Stacie

Mommy to - 6 yrs and son - 2 1/2 yrs. with RSS, assemetry, &

g-tube. (21 lbs. and 31 in. tall)

>

> Dear Jodi and Stacie,

>

> I wanted to support both of you as I think that you both have extremely

> valid points to make.

>

> When I was doing some research a couple of years ago, I was wondering why

> so many of the early papers included cognitive delays (and even mental

> retardation) as a characteristic of RSS. These were the papers written

> in the 70's, as well as some much earlier ones. Upon discussion of this

> with a well-respected doctor, (in fact, he was the president of the FL

> ped endo society a few years back ), he thought this was due to the lack

> of nutrition that children had received 30 -40 years ago. As Jodi,

> stated, the body will do what it must to support life functions, even at

> the expense of the brain. I have heard in from others (not just Dr.

> Harbison) that hypoglycemia can result in learning delays.

>

> As we know, with each passing year, there is more and more information

> out there. Back then, no one thought about augmenting nutrition with

> buttons or nG feedings. We are fortunate that our kids have past medical

> experience to benefit from. It is amazing how much has happened in just

> the past few years. was asking if I regretted not having a

> button in . If that was presented as an option to us when he was

> younger, who knows, we might be in a very different situation with him

> now. We each have to remember that we all individually want what is best

> for our children, and different families can tolerate different things.

> We also have to remember that there are other members in our families,

> with needs too. It's a juggle at best for all of us.

>

> Now, with Stacie, I think that what you said is so true also. It is so

> easy to lump things together with RSS or attribute it to RSS, sometimes

> without realizing it. I remember when was first diagnosed, we

> really wanted to discount what they were saying, because of

> characteristics of my husband's family. All his male forbears have

> clinodactyly, and broad foreheads (but they also range from 6'1.5 " to

> 6'7 " )! It was just the way they presented things to us that made it very

> hard to accept at first. The second opinion we got a few months later

> sealed it for us, however. It is very easy to say can't hit a

> baseball because he has low muscle tone due to RSS. It's a lot harder to

> say that he can't hit a baseball because he is not coordinated!

>

> I think that both of you spoke to an audience that can agree and be

> comforted with what each of you had to say. It is nice to know that if

> your child has learning problems, you are not alone. On the other hand,

> just because RSS is the diagnosis, it doesn't mean that they can't be

> academically gifted.

>

> Jodi, I really value your input to these discussions. When I read your

> e-mail, I didn't think you were blaming ADHD on RSS. I understand the

> hypoglycemia connection. It is rare to find moms and dads with older RSS

> kids to give the rest of us encouragement and alert us to what may lie

> ahead. For me, a real big issue is early puberty. I don't know why it

> freaks me out so much, but it really does. Asking you about Max now, I

> guess, is my way of preparing myself for what may be happening a few

> years down the road.

>

> Anyway, thanks a bunch to all who write. It is so great to know we are

> not alone!

>

> ___________________________________________________________________

> Get the Internet just the way you want it.

> Free software, free e-mail, and free Internet access for a month!

> Try Juno Web: http://dl.www.juno.com/dynoget/tagj.

>

October 17, 1999

Jodi:

I might have some names of children the same age or near the age of Max! Let me

know where you live (State) and I can try and put you in contact with them.

Stacie

P.S. Just read your email..........I have absolutely NO hard feelings!!!! We

are in this " together " and if I could, I'd give you a great big hug!!! I don't

know the computer symbols for hugs, but here's one anyway......... (Jodi)

z4all wrote:

>

> , what a wonderful message you posted! It really touched me. And

> now I want to respond to a couple of things you said:

>

> First of all, I spoke to Dr. Silver himself when Max was a baby. I had read

> his articles on RSS and felt that his listing mental retardation(MR) as a

> characteristic was unfair. I had met too many children who showed no signs

> of MR to let that be a major characteristic. I explained the

> nutrition/hypoglycemia concept to him. I also made him listen about the

> earlier theory that children who walk and talk late are automatically

> suspected of having MR. I strongly disagreed with that statement. After a

> half hour of going over this, he agreed that he had used early

> misinformation to jump to that conclusion. To my surprise, he began to

> change all of his papers to omit that theory!!! He was a wonderful man with

> whom I corresponded for a couple of years until he passed away. It was a

> surprise, as he had never mentioned any health problems. But I was so happy

> to have " met " him and been able to change the literature just a little bit.

>

> And I understand your fear of early puberty. I was and am terrified of it.

> To me, that means that any chance of achieving extra height is thrown out

> the window. I look at Max who is just 45 " and the thought of having him

> stop growing right now is just something I can't put into words. This is

> why we went ahead with the Zoladex. We had no choice if we were going to

> give him any more of a chance to grow taller. And you know there is still

> no guarantee that he will make or break that 5' mark. We are all taking a

> " chance " with this gh therapy. Dr. Harbison is so positive about all of

> this, but these are not HER children biologically. She does not know the

> pain we live with each and every day. She does not go to sleep worrying

> about how the world will handle our children if they are small. It is

> harder for boys than girls, too. So worry all you want. We can support

> each other.

>

> With Max being one of the oldest here, it is sometimes lonely not being able

> to ask the parent of another 11 or 12 year old. But you all give me so much

> more than I ever imagined. And being able to share my experiences with you

> helps so much!

>

> Thank you.

>

> Jodi

> Re: Just a thought

>

> >

> >Dear Jodi and Stacie,

> >

> >I wanted to support both of you as I think that you both have extremely

> >valid points to make.

> >

> >When I was doing some research a couple of years ago, I was wondering why

> >so many of the early papers included cognitive delays (and even mental

> >retardation) as a characteristic of RSS. These were the papers written

> >in the 70's, as well as some much earlier ones. Upon discussion of this

> >with a well-respected doctor, (in fact, he was the president of the FL

> >ped endo society a few years back ), he thought this was due to the lack

> >of nutrition that children had received 30 -40 years ago. As Jodi,

> >stated, the body will do what it must to support life functions, even at

> >the expense of the brain. I have heard in from others (not just Dr.

> >Harbison) that hypoglycemia can result in learning delays.

> >

> >As we know, with each passing year, there is more and more information

> >out there. Back then, no one thought about augmenting nutrition with

> >buttons or nG feedings. We are fortunate that our kids have past medical

> >experience to benefit from. It is amazing how much has happened in just

> >the past few years. was asking if I regretted not having a

> >button in . If that was presented as an option to us when he was

> >younger, who knows, we might be in a very different situation with him

> >now. We each have to remember that we all individually want what is best

> >for our children, and different families can tolerate different things.

> >We also have to remember that there are other members in our families,

> >with needs too. It's a juggle at best for all of us.

> >

> >Now, with Stacie, I think that what you said is so true also. It is so

> >easy to lump things together with RSS or attribute it to RSS, sometimes

> >without realizing it. I remember when was first diagnosed, we

> >really wanted to discount what they were saying, because of

> >characteristics of my husband's family. All his male forbears have

> >clinodactyly, and broad foreheads (but they also range from 6'1.5 " to

> >6'7 " )! It was just the way they presented things to us that made it very

> >hard to accept at first. The second opinion we got a few months later

> >sealed it for us, however. It is very easy to say can't hit a

> >baseball because he has low muscle tone due to RSS. It's a lot harder to

> >say that he can't hit a baseball because he is not coordinated!

> >

> >I think that both of you spoke to an audience that can agree and be

> >comforted with what each of you had to say. It is nice to know that if

> >your child has learning problems, you are not alone. On the other hand,

> >just because RSS is the diagnosis, it doesn't mean that they can't be

> >academically gifted.

> >

> >Jodi, I really value your input to these discussions. When I read your

> >e-mail, I didn't think you were blaming ADHD on RSS. I understand the

> >hypoglycemia connection. It is rare to find moms and dads with older RSS

> >kids to give the rest of us encouragement and alert us to what may lie

> >ahead. For me, a real big issue is early puberty. I don't know why it

> >freaks me out so much, but it really does. Asking you about Max now, I

> >guess, is my way of preparing myself for what may be happening a few

> >years down the road.

> >

> >Anyway, thanks a bunch to all who write. It is so great to know we are

> >not alone!

> >

> >___________________________________________________________________

> >Get the Internet just the way you want it.

> >Free software, free e-mail, and free Internet access for a month!

> >Try Juno Web: http://dl.www.juno.com/dynoget/tagj.

> >

> >>

>

October 18, 1999

, Stacie & Jodi- I just want to apologize for starting such a big

debate regarding RSS & learning problems. The only reason I asked is

because I've finally met people to talk to about Keagans problems & I have

10 years worth of questions. As Keag's mother, I have had to learn over the

years that it doesn't matter what caused what. Keagan is a very special

little guy that is different from the others yet very wonderful. As our

kids get older, school becomes their lives. Just like work for us. They

spend 8 hours a day out of our care and into the care of virtual strangers.

We can't physically be there to stop the bullies, or make a teacher

understand that our child can't do 30 push-ups in one minute. I didn't

necessarily want to know if RSS caused learning disabilities rather is

anyone out there experiencing the same type of problems.

I've been reading everyone's postings for over a month now & I see how

caring everyone is towards the other peoples problems. You all are great

and I thank you all for welcoming me into the group. I'm sure I'll be

asking " hot topic " questions again & I truly don't mean to offend anyone. I

just don't have any one else to ask.-------Marla