Introduction and Questions???

February 23, 2005

Hi,

My name is Sue (Mama to another , 4.75 years and Aleena 6.5 years) and

I joined this group several weeks ago to learn more about RSS/SGA. Thanks!!

I have learned lots. It has been very refreshing to be on an email list that

is helpful, all about our kids and pretty much de-void of personal agendas.

My Matt recently had an appointment at our local Children's Hospital Growth

Clinic. He was evaluated by a pediatric endo and geneticist. They diagnoised

him as SGA. Little background......I (as a single mom) adopted my children

from a former Soviet Country in 2001 at the ages of 14 months and 3 years. I

have very little information regarding my kids birthparents, etc.. My Mighty

Matt is absolutely delightful, smart, engaging, loving, cute as can be, and

funny. He has always been very small (3 to 5%) and the only issue he & I have

ever had is regarding his eating. Not what he would eats but quantity. It has

been a constant struggle. Friends and family always said that he'll eat when

he is hungry......that was the problem he wasn't ever hungry. After reading

your emails, I now feel a kinship with you and know this is a huge issue with

RSS/SGA children. Although Matt has always been very small, he has always

been ahead or right on target with his development. Our pediatrician has

monitored his growth closely but wasn't concerned because he was doing so great

otherwise. Matt is just too cute and engaging for his own good. This year I

changed our insurance to a company that didn't require a referral to see a

specialist. I felt something wasn't quite right with his growth.

Now I find myself torn on how to proceed with a course of action for my son.

(Growth Hormones or not????

How will he feel in future if we don't do hormone treatment and if he ends up

being very short in stature???

How will he feel if we decide to go forward and we find out some long range

side effects??

Will his growth continue on it's current curve??

If I do decide on GH when is the appropriate time??? Now or wait a year or

so??? When is too late??? )

I realize that with many RSS children, the choice to use GH is obvious

but.......to others...how did you make that decision???

Thanks, Sue

February 24, 2005

Sue - Welcome! We have several parents who also have adoptive

children and have a lack of birth information, so I am sure they

will write you. Re the growth hormeone, my suggestion would be to

take it one step at a time. There is still a lot to digest and

learn about children like your son before making a monumental step

like growth hormone.

Growth hormone for short SGA children and RSS children is about more

than just height. There are many other benefits (and one negative

too). Where do you live? Is there any way that you can come to the

MAGIC convention in July in Chicago? We do have scholarships

available for first time families that cover hotel and registration,

you just have to get there. You will learn TONS -- especially this

year! Dr. Chenausek, reknowned with the subject of GH and SGA kids,

will be speaking on the range of studies on this topic, and what the

results have been. A key presentation for someone like you. Plus

tons of other presentations. And lots of fun for the kids --

will find out that there are a lot of other kids just like

him in size, and personality! And Aleena will have a blast.

For now, I would contact MAGIC tollfree 800-3MAGIC3 and ask them for

a copy of their MAGIC Magazine as well as their SGA pamphlet. Then

go from here. Keep reading, and many of us would be happy to share

our stories with you, as to how we made the decision either to use

or decline growth hormone treatment.

My daughter just turned 9 years old. She is on Prevacid for

reflux, has delayed gastric emptying, and eats tons of calories

thanks to Periactin. She has been on Humatrope growth hormone since

she was 4 yrs 9 months old (she was 27 pounds and 38 inches tall at

that point, so not on the growth charts). My husband is very tall,

so her target height was the 75th percentile. After 4 years on GH,

she has now reached the 75th percentile in height, and is about 15th

in weight (skinny minny). Her body mass has improved, her strength

has improved, she is no longer sick all the time. It has truly been

wonderful. But that is just our story. There is no right or wrong

answer. All you can do is take it one step at a time, do lots of

research, and make the decision that your own gut feels is right for

YOUR child and your family.

We're all here for you no matter what you decide. Salem

(, turned 9, Tyler turning 8).

> Hi,

>

> My name is Sue (Mama to another , 4.75 years and Aleena 6.5

years) and

> I joined this group several weeks ago to learn more about

RSS/SGA. Thanks!!

> I have learned lots. It has been very refreshing to be on an

email list that

> is helpful, all about our kids and pretty much de-void of personal

agendas.

>

> My Matt recently had an appointment at our local Children's

Hospital Growth

> Clinic. He was evaluated by a pediatric endo and geneticist.

They diagnoised

> him as SGA. Little background......I (as a single mom) adopted my

children

> from a former Soviet Country in 2001 at the ages of 14 months and

3 years. I

> have very little information regarding my kids birthparents,

etc.. My Mighty

> Matt is absolutely delightful, smart, engaging, loving, cute as

can be, and

> funny. He has always been very small (3 to 5%) and the only issue

he & I have

> ever had is regarding his eating. Not what he would eats but

quantity. It has

> been a constant struggle. Friends and family always said that

he'll eat when

> he is hungry......that was the problem he wasn't ever hungry.

After reading

> your emails, I now feel a kinship with you and know this is a huge

issue with

> RSS/SGA children. Although Matt has always been very small, he

has always

> been ahead or right on target with his development. Our

pediatrician has

> monitored his growth closely but wasn't concerned because he was

doing so great

> otherwise. Matt is just too cute and engaging for his own good.

This year I

> changed our insurance to a company that didn't require a referral

to see a

> specialist. I felt something wasn't quite right with his growth.

>

> Now I find myself torn on how to proceed with a course of action

for my son.

> (Growth Hormones or not????

> How will he feel in future if we don't do hormone treatment and if

he ends up

> being very short in stature???

> How will he feel if we decide to go forward and we find out some

long range

> side effects??

> Will his growth continue on it's current curve??

> If I do decide on GH when is the appropriate time??? Now or wait

a year or

> so??? When is too late??? )

>

> I realize that with many RSS children, the choice to use GH is

obvious

> but.......to others...how did you make that decision???

>

> Thanks, Sue

>

February 24, 2005

Hi Sue,

Welcome to our group. I hope we can answer your questions.

I cannot answer how Matt will feel in the future if you do or do not

give him growth hormone. Much depends on how you raise him.

When is it too late, probably within a year of puberty. Keep in mind,

one characteristic of RSS is precoius puberty. Matt probably will not

start puberty early but it does happen more than usual to RSS kids.

It is a factor to consider.

When we had to decide if we should give our son growth hormone, here

is how we looked at it. Our son has a growth disorder. This is a

treatable condition like diabettes, or asthma or any other medical

problem. The treatment is a daily injection of growth hormone. He

needs this to help correct this condition. So giving him growth

hormone was (for us) the responsible thing to do. Also, we did not

want our son to be 18, short and finding out he could have been

taller and then being mad about his height.

We also figured that we can do this for now and maybe when he is

older, he can tell us if he wants to continue with the shots through

puberty. If he doesn't then we can stop. If we did it the other way,

then he may enter puberty early and we might not have enough time to

make the lost growth time.

Others feel that it is abnormal (I can't think of a better word at

the moment) to give growth hormone and that the proper thing to do is

let nature take its course.

Either way, whether you decide to give growth hormone or not, I'm

sure you will do your best and that Matt will be happy and healthy.

Last, since growth hormone is synthetic form of what we make in our

bodies, there few side affects. That is not to say there are none.

Some people have reported them. I remember only one or two on this

list reporting that their child had some joint pain or headaches.

They stopped for a while, changed brands, and that seemed to help.

I hope this helps.

Ken M

> Hi,

>

> My name is Sue (Mama to another , 4.75 years and Aleena 6.5

years) and

> I joined this group several weeks ago to learn more about RSS/SGA.

Thanks!!

> I have learned lots. It has been very refreshing to be on an email

list that

> is helpful, all about our kids and pretty much de-void of personal

agendas.

>

> My Matt recently had an appointment at our local Children's

Hospital Growth

> Clinic. He was evaluated by a pediatric endo and geneticist. They

diagnoised

> him as SGA. Little background......I (as a single mom) adopted my

children

> from a former Soviet Country in 2001 at the ages of 14 months and 3

years. I

> have very little information regarding my kids birthparents,

etc.. My Mighty

> Matt is absolutely delightful, smart, engaging, loving, cute as can

be, and

> funny. He has always been very small (3 to 5%) and the only issue

he & I have

> ever had is regarding his eating. Not what he would eats but

quantity. It has

> been a constant struggle. Friends and family always said that

he'll eat when

> he is hungry......that was the problem he wasn't ever hungry.

After reading

> your emails, I now feel a kinship with you and know this is a huge

issue with

> RSS/SGA children. Although Matt has always been very small, he

has always

> been ahead or right on target with his development. Our

pediatrician has

> monitored his growth closely but wasn't concerned because he was

doing so great

> otherwise. Matt is just too cute and engaging for his own good.

This year I

> changed our insurance to a company that didn't require a referral

to see a

> specialist. I felt something wasn't quite right with his growth.

>

> Now I find myself torn on how to proceed with a course of action

for my son.

> (Growth Hormones or not????

> How will he feel in future if we don't do hormone treatment and if

he ends up

> being very short in stature???

> How will he feel if we decide to go forward and we find out some

long range

> side effects??

> Will his growth continue on it's current curve??

> If I do decide on GH when is the appropriate time??? Now or wait a

year or

> so??? When is too late??? )

>

> I realize that with many RSS children, the choice to use GH is

obvious

> but.......to others...how did you make that decision???

>

> Thanks, Sue

>

February 24, 2005

hi sue!!!

welcome to this great group of caring and supportive people!!!

where do you guys live? could you go to NYC to have a consult with

dr harbison? she is said to be the US expert in rss/sga. have you

checked out Magic Foundations website yet www.magicfoundation.org

they are a great source of support and provide their members with

all kinds of helpful info. they also put on a convention every july

that is just awesome to go to!!! as far as GHT my son christopher

is 4yrs and we have just started ght. he is rss. i just felt it

was something we had to do for him. he doesnt mind getting his

shots every night at all. i think it is really up to the doctor and

your personal choice. good luck!!!

jodie c

(nicholas-nonrss 6 1/2, christopher-4 rss 27lbs 6oz 36 1/4 "

periactin 4.5cc 2xdaily, ght genotropin .5, assmentry(left side

1cm), ADHD and OCD possible, athon-20m nonrss)

> Hi,

>

> My name is Sue (Mama to another , 4.75 years and Aleena 6.5

years) and

> I joined this group several weeks ago to learn more about

RSS/SGA. Thanks!!

> I have learned lots. It has been very refreshing to be on an

email list that

> is helpful, all about our kids and pretty much de-void of personal

agendas.

>

> My Matt recently had an appointment at our local Children's

Hospital Growth

> Clinic. He was evaluated by a pediatric endo and geneticist.

They diagnoised

> him as SGA. Little background......I (as a single mom) adopted my

children

> from a former Soviet Country in 2001 at the ages of 14 months and

3 years. I

> have very little information regarding my kids birthparents,

etc.. My Mighty

> Matt is absolutely delightful, smart, engaging, loving, cute as

can be, and

> funny. He has always been very small (3 to 5%) and the only issue

he & I have

> ever had is regarding his eating. Not what he would eats but

quantity. It has

> been a constant struggle. Friends and family always said that

he'll eat when

> he is hungry......that was the problem he wasn't ever hungry.

After reading

> your emails, I now feel a kinship with you and know this is a huge

issue with

> RSS/SGA children. Although Matt has always been very small, he

has always

> been ahead or right on target with his development. Our

pediatrician has

> monitored his growth closely but wasn't concerned because he was

doing so great

> otherwise. Matt is just too cute and engaging for his own good.

This year I

> changed our insurance to a company that didn't require a referral

to see a

> specialist. I felt something wasn't quite right with his growth.

>

> Now I find myself torn on how to proceed with a course of action

for my son.

> (Growth Hormones or not????

> How will he feel in future if we don't do hormone treatment and if

he ends up

> being very short in stature???

> How will he feel if we decide to go forward and we find out some

long range

> side effects??

> Will his growth continue on it's current curve??

> If I do decide on GH when is the appropriate time??? Now or wait

a year or

> so??? When is too late??? )

>

> I realize that with many RSS children, the choice to use GH is

obvious

> but.......to others...how did you make that decision???

>

> Thanks, Sue

>

February 24, 2005

hi sue,

welcome to this great and suppoutive group.this place has ben a real help for

me.my story for my son jacob 8 is simialer to yours. at 31/2 he was said to be

RSS but we now think it is more possiable the he is SGA. the food bit it for us

was not what he ate but how much last year we went to the magic convention for

the first time it was great. at this point he wa saverly underwieght at 7 1/2 he

was only 36lb not good i was really fearing a g-tube i thought it was the only

answer for weight gain but thanks to a vist to dr.h their i had one more

opption a men call peractin 7 mths later no g-tube and 10 lb more we are doing

great. we did go with the gh we just started it dec. 6 2004 but have already

seen great changes for him it was a matter of heath to me. sure he was short not

onthe charts ......but it he is short and not growing right my though was what

else was not growing too he need this was my opp. it is a hard desistion but one

no matter how you deside is made out of love.

also think that gh offten helps with appitite.another plus for me. he is now

slowly makeing it on the charts. as i said he is 8 so he does know what going on

not that i really gave him a choice but i felt we were running out of time and

wanted that for him.

so what are you from i am sure you have heard it you are close to chicago

........or if you are close to ny

cara mom to jacob 8 46lb almost 4ft ght peractin zertec flonase prevacid

for those of you who know and met us jacob and breena(4) are the same weight

and only about 2 in difference in hight if we would not have stater his gh she

would have passed him this year

envse@... wrote: