Intro Info for new RSS/SGA Families (and comment on subject lines!)

[Guest guest]

Yikes.! I didn't mean to stir up debate over what is good listserve

commentary, or make it seem as if MAGIC wants to tell the listserve

what to do!!! Just wanted to suggest that no matter WHAT the posting

is, to make sure the subject line matches as best as possible.

Doesn't even have to be the word, " Chat " ..whatever works for you.

Just so you know, I receive 10-15 NEW emails and phone calls A WEEK

from parents of newly diagnosed RSS/SGA children..or wondering about

the diagnosis! I want all these parents to reap the benefits of the

listserve's factual info as well as fun, chatty support. I'm sorry

some of you misunderstood my intention. And, good point, if I have

any issues that Ken should address, I'll email him directly.

So, Ken, here's the type of info that I send to all new families.

Feel free to cut and paste it, if you as moderator, feel it is useful

for newbies who join! And all, you can see that I emphasize that the

listserve is not a MAGIC run entity.

Hugs to all,

-- " the pot stirrer "

Katy's Basic Info about RSS/SGA for New Families:

Section 1-The Listserve

Section 2-Basic Checklist

Section 3-gHT

Section 4-Feeding Clinics

Section 5-The Convention

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

Section 1: The Listserve

The RSS Online Listserve: Have you joined yet?

A great resource available to you is the RSS Listserve! A listserve

is basically an electronic " village " where lots of people with

similar concerns and questions can have conversations. The RSS

Listserve is run by Yahoo Groups is totally FREE! Many SGA/RSS

families also belong to the listserve. While it is not an official

MAGIC listserve, many, many MAGIC families belong to it.

In addition to the discussions the listserve website has tons of

photos of typical RSS kids, files related nutrition, eating, website

links and other useful information.

All you need to do to join is go here:

www.yahoogroups.com/groups/rss-support. The screens will tell you

what to do. You just enter a small amount of info to join. Then,

you can give preferences such as whether you want listserve messages

to come to your email, or if you would rather click on the website to

find messages.

Ken Merrithew (a MAGIC family member and dad of an RSS son) is the

listserve moderator. He, and the other parents there will welcome

you with warmth, help and support! You will definitely find other

families there who share your same issues, concerns and are there to

smile, laugh, cry and be with you.

Section 2: CHECKLIST FOR PARENTS:

Here's my little checklist for new RSS/SGA parents to think about:

1. MAGIC INfo:

www.magicfoundation.org/divisions/rss.html

2. Then, read this website: http://www.geneclinics.org/query?dz=rss

(more

genetics focused, but great overview of treatments)

3. Learn about the following:

-How to use cornstarch to prevent hypoglycemia

-Why fasting should never be allowed for RSS children undergoing

surgery

-Make sure you know all about Periactin as an appetite stimulant

-Watch out for ketones being spilled

4.Some Other Basics:

BASIC 1: Make sure your child is correctly diagnosed and under the

care of a

good endocrinologist.

BASIC 2: First step is to prevent hypoglycemia: increase calories,

but watch out that weight doesn't increase too quickly compared to

height

BASIC 3: Measurement is key. Consistent, accurate and reliable scales

and measurement tools are essential. Important to track growth

velocity, not just

absolute height and weight. Your child's doctors need to know how to

do measurements.

BASIC 4: GHT is an important option. While some physicians feel that

GHT isn't warranted for kids that actually test " normal " GH levels,

it is important to appreciate and understand that RSS and SGA kids

tend to have some sort of GH insufficiency, and GHT can boost the

way the body uses GH.

BASIC 5: The usual protocol for RSS/SGA kids: get the weight up,

restore the caloric deficit, work with GI for feeding tube issues,

get the GHT approved, watch for early

pubrty, take good bone-age measures, make sure bloodwork is taking at

least yearly to test for insulin, growth factors, signs of puberty,

think about suppressing puberty or slowing adrenarche to increase

chance of growth.

BASIC 5: Your doctor needs to be a quarterback, so that you can

quickly point if needed, to good endocrinologists, GI, orthopedics.

RSS/SGA affects many different bodily systems. You need to also make

sure you carefully helps assess developmental milestones.

Section 3: What about Growth Hormone?

FIRST: MOST RSS/SGA children have normal GH levels!!!!! It isn't

just Growth HOrmone levels that cause growth. The pituitary makes

the GH, which tells the liver to produce insulin growth factors

(IGF1 andn IGFPB3). These in turn tell bones and muscles to grow.

The theory is that the growth hormone treatment helps the

system " jumpstart " and helps the cells to absorb insulin

to cause growth (I have simplified this explanation). So, in the

USA, insurance companies cover GHT for RSS children and SGA

children, even if their GH levels test normal.

SECOND: The MAGIC library list which includes many articles

supporting the use of GHT for RSS and SGAchildren.

THIRD: My son was below the growth c harts at age 3. AFter 6 years

of GHT he is now in the 40th percentile.

FOURTH: There is no other way to increase growth that I know of.

However, appetite stimulants such as periactin may help replace the

caloric deficits in RSS/SGA children, which can help with some

growth at EARLY ages.

Some other info for you:

Humatrope has a fabulous website with information about growth

hormone therapy. http://www.humatrope.com/index.jsp.

Genotropin's site is: http://www.genotropin.com/sga/faqs/faqs.html

Both sites have great information, especially in the FAQ section. I

guess my top three comments about growth hormone therapy is:

ONE: Yes, we hate to give our kids shots, but the increase in not

just height, but stamina, bone strength, muscle tone, heart function

and metabolic function is so important and worth it! (The Videotaped

talks from last summer's Convention stress these points too).

TWO: Yes, it IS safe.

THREE: It's harder on the parents than the children

Section 4: Feeding Clinic Information. Many RSS/SGA children

benefit from feeding clinicians.

http://members.aol.com/lmwill262/page7/ A homegrown list of feeding

clinics!

http://www.marcus.org/kki_cp.jsp?pid=2446 ALABAMA

http://www.kennedykrieger.org/kki_diag.jsp?pid=1084 MARYLAND

http://new-vis.com/p-clin.htm NEw Visions Feeding Clinic Services

I'm also attaching some information on periactin (appetite stimulant)

and cornstarch.

Section 5: THE MAGIC CONVENTION:

Something for you to think about for this year: Every year, MAGIC

hosts their annual medical convention in July in Chicago. It is an

amazing educational and social experience. This past July we had

over 100 RSS/SGA families attend!! Doctors are available to

provide free assessments to every family that needs one!

Information about this year's convention can be found at:

www.magicfoundation.org. The Convention runs 7/20-7/23 at the

O'Hare Marriott.

In addition, as I mentioned, MAGIC offers a library of articles

relevant to RSS/SGA. You can request and receive copies of any or

all for free. MAGIC also has a quarterly newsletter,

which has sections for each division within the foundation. Our

section includes personal stories from RSS families, as well as

great medical pieces

of information, info on the latest RSS medical journal articles that

have

been published, and related items of interest. There is new

information

being learned about RSS every day, so it is important to stay on top

of

things, even with an older RSS child (especially with the subject of

puberty).

[Guest guest]

Ah just to stir the pot some more (LOL just joking)

But this is the point I was trying to make.......

Right now I am looking at this subject heading BEFORE I open the email and it

says " Intro Info for new RSS/SGA Families (a.......

And that is all I get. So in actual fact it doesn't help me to discern if I am

going to open this email up or not, because I would have totally missed that you

were addressing TWO topics in this email. The subject line is just too long.

What I will do is go to Yahoo tomorrow and run some searches so I can learn more

about that and see where the problems are stemming from.

Have a good evening everyone!

Deb

Intro Info for new RSS/SGA Families (and comment on

subject lines!)

Yikes.! I didn't mean to stir up debate over what is good listserve

commentary, or make it seem as if MAGIC wants to tell the listserve

what to do!!! Just wanted to suggest that no matter WHAT the posting

is, to make sure the subject line matches as best as possible.

Doesn't even have to be the word, " Chat " ..whatever works for you.

Just so you know, I receive 10-15 NEW emails and phone calls A WEEK

from parents of newly diagnosed RSS/SGA children..or wondering about

the diagnosis! I want all these parents to reap the benefits of the

listserve's factual info as well as fun, chatty support. I'm sorry

some of you misunderstood my intention. And, good point, if I have

any issues that Ken should address, I'll email him directly.

So, Ken, here's the type of info that I send to all new families.

Feel free to cut and paste it, if you as moderator, feel it is useful

for newbies who join! And all, you can see that I emphasize that the

listserve is not a MAGIC run entity.

Hugs to all,

-- " the pot stirrer "

Katy's Basic Info about RSS/SGA for New Families:

Section 1-The Listserve

Section 2-Basic Checklist

Section 3-gHT

Section 4-Feeding Clinics

Section 5-The Convention

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

Section 1: The Listserve

The RSS Online Listserve: Have you joined yet?

A great resource available to you is the RSS Listserve! A listserve

is basically an electronic " village " where lots of people with

similar concerns and questions can have conversations. The RSS

Listserve is run by Yahoo Groups is totally FREE! Many SGA/RSS

families also belong to the listserve. While it is not an official

MAGIC listserve, many, many MAGIC families belong to it.

In addition to the discussions the listserve website has tons of

photos of typical RSS kids, files related nutrition, eating, website

links and other useful information.

All you need to do to join is go here:

www.yahoogroups.com/groups/rss-support. The screens will tell you

what to do. You just enter a small amount of info to join. Then,

you can give preferences such as whether you want listserve messages

to come to your email, or if you would rather click on the website to

find messages.

Ken Merrithew (a MAGIC family member and dad of an RSS son) is the

listserve moderator. He, and the other parents there will welcome

you with warmth, help and support! You will definitely find other

families there who share your same issues, concerns and are there to

smile, laugh, cry and be with you.

Section 2: CHECKLIST FOR PARENTS:

Here's my little checklist for new RSS/SGA parents to think about:

1. MAGIC INfo:

www.magicfoundation.org/divisions/rss.html

2. Then, read this website: http://www.geneclinics.org/query?dz=rss

(more

genetics focused, but great overview of treatments)

3. Learn about the following:

-How to use cornstarch to prevent hypoglycemia

-Why fasting should never be allowed for RSS children undergoing

surgery

-Make sure you know all about Periactin as an appetite stimulant

-Watch out for ketones being spilled

4.Some Other Basics:

BASIC 1: Make sure your child is correctly diagnosed and under the

care of a

good endocrinologist.

BASIC 2: First step is to prevent hypoglycemia: increase calories,

but watch out that weight doesn't increase too quickly compared to

height

BASIC 3: Measurement is key. Consistent, accurate and reliable scales

and measurement tools are essential. Important to track growth

velocity, not just

absolute height and weight. Your child's doctors need to know how to

do measurements.

BASIC 4: GHT is an important option. While some physicians feel that

GHT isn't warranted for kids that actually test " normal " GH levels,

it is important to appreciate and understand that RSS and SGA kids

tend to have some sort of GH insufficiency, and GHT can boost the

way the body uses GH.

BASIC 5: The usual protocol for RSS/SGA kids: get the weight up,

restore the caloric deficit, work with GI for feeding tube issues,

get the GHT approved, watch for early

pubrty, take good bone-age measures, make sure bloodwork is taking at

least yearly to test for insulin, growth factors, signs of puberty,

think about suppressing puberty or slowing adrenarche to increase

chance of growth.

BASIC 5: Your doctor needs to be a quarterback, so that you can

quickly point if needed, to good endocrinologists, GI, orthopedics.

RSS/SGA affects many different bodily systems. You need to also make

sure you carefully helps assess developmental milestones.

Section 3: What about Growth Hormone?

FIRST: MOST RSS/SGA children have normal GH levels!!!!! It isn't

just Growth HOrmone levels that cause growth. The pituitary makes

the GH, which tells the liver to produce insulin growth factors

(IGF1 andn IGFPB3). These in turn tell bones and muscles to grow.

The theory is that the growth hormone treatment helps the

system " jumpstart " and helps the cells to absorb insulin

to cause growth (I have simplified this explanation). So, in the

USA, insurance companies cover GHT for RSS children and SGA

children, even if their GH levels test normal.

SECOND: The MAGIC library list which includes many articles

supporting the use of GHT for RSS and SGAchildren.

THIRD: My son was below the growth c harts at age 3. AFter 6 years

of GHT he is now in the 40th percentile.

FOURTH: There is no other way to increase growth that I know of.

However, appetite stimulants such as periactin may help replace the

caloric deficits in RSS/SGA children, which can help with some

growth at EARLY ages.

Some other info for you:

Humatrope has a fabulous website with information about growth

hormone therapy. http://www.humatrope.com/index.jsp.

Genotropin's site is: http://www.genotropin.com/sga/faqs/faqs.html

Both sites have great information, especially in the FAQ section. I

guess my top three comments about growth hormone therapy is:

ONE: Yes, we hate to give our kids shots, but the increase in not

just height, but stamina, bone strength, muscle tone, heart function

and metabolic function is so important and worth it! (The Videotaped

talks from last summer's Convention stress these points too).

TWO: Yes, it IS safe.

THREE: It's harder on the parents than the children

Section 4: Feeding Clinic Information. Many RSS/SGA children

benefit from feeding clinicians.

http://members.aol.com/lmwill262/page7/ A homegrown list of feeding

clinics!

http://www.marcus.org/kki_cp.jsp?pid=2446 ALABAMA

http://www.kennedykrieger.org/kki_diag.jsp?pid=1084 MARYLAND

http://new-vis.com/p-clin.htm NEw Visions Feeding Clinic Services

I'm also attaching some information on periactin (appetite stimulant)

and cornstarch.

Section 5: THE MAGIC CONVENTION:

Something for you to think about for this year: Every year, MAGIC

hosts their annual medical convention in July in Chicago. It is an

amazing educational and social experience. This past July we had

over 100 RSS/SGA families attend!! Doctors are available to

provide free assessments to every family that needs one!

Information about this year's convention can be found at:

www.magicfoundation.org. The Convention runs 7/20-7/23 at the

O'Hare Marriott.

In addition, as I mentioned, MAGIC offers a library of articles

relevant to RSS/SGA. You can request and receive copies of any or

all for free. MAGIC also has a quarterly newsletter,

which has sections for each division within the foundation. Our

section includes personal stories from RSS families, as well as

great medical pieces

of information, info on the latest RSS medical journal articles that

have

been published, and related items of interest. There is new

information

being learned about RSS every day, so it is important to stay on top

of

things, even with an older RSS child (especially with the subject of

puberty).

[Guest guest]

Katy - well, just remember we are all family here and this support

group means ALOT to all of us. Thank you for referring so many

people here - I'm sure your job at MAGIC is a very busy one and we

appreciate your taking the time to make sure people find the right

place. Besides, there really is no debate - this is a great place

and we will all (speaking for myself of course) do our best to make

people feel comfortable and welcome here - no matter what subject

they are discussing.

By the way - you haven't mentioned in your last couple of e-

mails to us. How are things? Is he doing okay? How old is he

now? Are you finding anything more challenging with his healthcare

these days? I can't remember how old he is so I'm not sure where he

is at with school. Are you doing okay?

- H

>

> Yikes.! I didn't mean to stir up debate over what is good

listserve

> commentary, or make it seem as if MAGIC wants to tell the

listserve

> what to do!!! Just wanted to suggest that no matter WHAT the

posting

> is, to make sure the subject line matches as best as possible.

> Doesn't even have to be the word, " Chat " ..whatever works for you.

>

> Just so you know, I receive 10-15 NEW emails and phone calls A

WEEK

> from parents of newly diagnosed RSS/SGA children..or wondering

about

> the diagnosis! I want all these parents to reap the benefits of

the

> listserve's factual info as well as fun, chatty support. I'm

sorry

> some of you misunderstood my intention. And, good point, if I

have

> any issues that Ken should address, I'll email him directly.

>

> So, Ken, here's the type of info that I send to all new families.

> Feel free to cut and paste it, if you as moderator, feel it is

useful

> for newbies who join! And all, you can see that I emphasize that

the

> listserve is not a MAGIC run entity.

>

> Hugs to all,

> -- " the pot stirrer "

>

> Katy's Basic Info about RSS/SGA for New Families:

> Section 1-The Listserve

> Section 2-Basic Checklist

> Section 3-gHT

> Section 4-Feeding Clinics

> Section 5-The Convention

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

---

> Section 1: The Listserve

> The RSS Online Listserve: Have you joined yet?

>

> A great resource available to you is the RSS Listserve! A

listserve

> is basically an electronic " village " where lots of people with

> similar concerns and questions can have conversations. The RSS

> Listserve is run by Yahoo Groups is totally FREE! Many SGA/RSS

> families also belong to the listserve. While it is not an

official

> MAGIC listserve, many, many MAGIC families belong to it.

>

> In addition to the discussions the listserve website has tons of

> photos of typical RSS kids, files related nutrition, eating,

website

> links and other useful information.

>

> All you need to do to join is go here:

> www.yahoogroups.com/groups/rss-support. The screens will tell you

> what to do. You just enter a small amount of info to join. Then,

> you can give preferences such as whether you want listserve

messages

> to come to your email, or if you would rather click on the website

to

> find messages.

>

> Ken Merrithew (a MAGIC family member and dad of an RSS son) is the

> listserve moderator. He, and the other parents there will welcome

> you with warmth, help and support! You will definitely find other

> families there who share your same issues, concerns and are there

to

> smile, laugh, cry and be with you.

>

> Section 2: CHECKLIST FOR PARENTS:

> Here's my little checklist for new RSS/SGA parents to think about:

> 1. MAGIC INfo:

> www.magicfoundation.org/divisions/rss.html

> 2. Then, read this website: http://www.geneclinics.org/query?

dz=rss

> (more

> genetics focused, but great overview of treatments)

> 3. Learn about the following:

> -How to use cornstarch to prevent hypoglycemia

> -Why fasting should never be allowed for RSS children undergoing

> surgery

> -Make sure you know all about Periactin as an appetite stimulant

> -Watch out for ketones being spilled

> 4.Some Other Basics:

>

> BASIC 1: Make sure your child is correctly diagnosed and under the

> care of a

> good endocrinologist.

> BASIC 2: First step is to prevent hypoglycemia: increase

calories,

> but watch out that weight doesn't increase too quickly compared

to

> height

> BASIC 3: Measurement is key. Consistent, accurate and reliable

scales

> and measurement tools are essential. Important to track growth

> velocity, not just

> absolute height and weight. Your child's doctors need to know how

to

> do measurements.

> BASIC 4: GHT is an important option. While some physicians feel

that

> GHT isn't warranted for kids that actually test " normal " GH

levels,

> it is important to appreciate and understand that RSS and SGA

kids

> tend to have some sort of GH insufficiency, and GHT can boost

the

> way the body uses GH.

> BASIC 5: The usual protocol for RSS/SGA kids: get the weight up,

> restore the caloric deficit, work with GI for feeding tube

issues,

> get the GHT approved, watch for early

> pubrty, take good bone-age measures, make sure bloodwork is taking

at

> least yearly to test for insulin, growth factors, signs of

puberty,

> think about suppressing puberty or slowing adrenarche to increase

> chance of growth.

> BASIC 5: Your doctor needs to be a quarterback, so that you can

> quickly point if needed, to good endocrinologists, GI,

orthopedics.

> RSS/SGA affects many different bodily systems. You need to also

make

> sure you carefully helps assess developmental milestones.

>

>

> Section 3: What about Growth Hormone?

>

> FIRST: MOST RSS/SGA children have normal GH levels!!!!! It isn't

> just Growth HOrmone levels that cause growth. The pituitary

makes

> the GH, which tells the liver to produce insulin growth factors

> (IGF1 andn IGFPB3). These in turn tell bones and muscles to

grow.

> The theory is that the growth hormone treatment helps the

> system " jumpstart " and helps the cells to absorb insulin

> to cause growth (I have simplified this explanation). So, in the

> USA, insurance companies cover GHT for RSS children and SGA

> children, even if their GH levels test normal.

>

> SECOND: The MAGIC library list which includes many articles

> supporting the use of GHT for RSS and SGAchildren.

>

> THIRD: My son was below the growth c harts at age 3. AFter 6

years

> of GHT he is now in the 40th percentile.

>

> FOURTH: There is no other way to increase growth that I know of.

> However, appetite stimulants such as periactin may help replace

the

> caloric deficits in RSS/SGA children, which can help with some

> growth at EARLY ages.

>

> Some other info for you:

>

> Humatrope has a fabulous website with information about growth

> hormone therapy. http://www.humatrope.com/index.jsp.

> Genotropin's site is: http://www.genotropin.com/sga/faqs/faqs.html

> Both sites have great information, especially in the FAQ section.

I

> guess my top three comments about growth hormone therapy is:

>

> ONE: Yes, we hate to give our kids shots, but the increase in not

> just height, but stamina, bone strength, muscle tone, heart

function

> and metabolic function is so important and worth it! (The

Videotaped

> talks from last summer's Convention stress these points too).

> TWO: Yes, it IS safe.

> THREE: It's harder on the parents than the children

>

> Section 4: Feeding Clinic Information. Many RSS/SGA children

> benefit from feeding clinicians.

>

> http://members.aol.com/lmwill262/page7/ A homegrown list of

feeding

> clinics!

>

> http://www.marcus.org/kki_cp.jsp?pid=2446 ALABAMA

>

> http://www.kennedykrieger.org/kki_diag.jsp?pid=1084 MARYLAND

>

> http://new-vis.com/p-clin.htm NEw Visions Feeding Clinic Services

>

> I'm also attaching some information on periactin (appetite

stimulant)

> and cornstarch.

>

> Section 5: THE MAGIC CONVENTION:

> Something for you to think about for this year: Every year, MAGIC

> hosts their annual medical convention in July in Chicago. It is

an

> amazing educational and social experience. This past July we had

> over 100 RSS/SGA families attend!! Doctors are available to

> provide free assessments to every family that needs one!

> Information about this year's convention can be found at:

> www.magicfoundation.org. The Convention runs 7/20-7/23 at the

> O'Hare Marriott.

>

> In addition, as I mentioned, MAGIC offers a library of articles

> relevant to RSS/SGA. You can request and receive copies of any

or

> all for free. MAGIC also has a quarterly newsletter,

> which has sections for each division within the foundation. Our

> section includes personal stories from RSS families, as well as

> great medical pieces

> of information, info on the latest RSS medical journal articles

that

> have

> been published, and related items of interest. There is new

> information

> being learned about RSS every day, so it is important to stay on

top

> of

> things, even with an older RSS child (especially with the subject

of

> puberty).

>