Jen's Latest Research Trip

[Guest guest]

OK guys, I really should be doing this every 6 months, but it has

been a year!!! I spent a lot of hours searching PubMed for ANY

medical journal article published on RSS or SGA OR IUGR with key

words like growth hormone, adrenarche, appetite, asymmetry, and more.

Then I went to UCLA's BioMed Library and went through their stacks

of medical journals, and then xeroxed them all.... for 3.5 hours

with both kids -- let's say we won't take them next time!!! ARGGH!

How do you explain that even whispering is not really allowed in a

medical library!!!

I am first reading the articles and entering key data into a

database that I will use for the writing of our upcoming firstever

RSS/SGA Guidebook (hope to be published by the convention - thanks

to donors who have donated more than $8,000 for its creation!)

However, I will also log most of these into our MAGIC Library Log

and they will be available to all of you who are members for no

charge. The Library Log will also continue to have a Summary

section which gives in a nutshell what each study has found.

I haven't read through all the articles, but here is a smattering of

tickling info.....

1) Growth Hormone and RSS/SGA Kids: WOW -- definitely improves

final adult height; every study is finding it lowers blood pressure

(and keeps the blood pressure lower even after disctd; increases BMI

and weight; increases muscle mass; BUT the bad is that it can also

increase the insulin levels which makes hypoglycemia more

problematic. The good news is that this goes away within 6 months

of GHT being discontinued. "

2) Adrenarche. I found several articles published on the use of

products like Arimidex (the drug that Dr. Harbison is using to

postpone adrenarche) to postpone adrenarche. Very interesting ideas

these physicians/scientists are using -- it is showing that post-

posting adrenarche may be a key thing for our kids -- if we can

postpone adrenarche we may not need to postpone puberty, because

puberty would then happen at a more normal time allowing more time

to grow.

3) Puberty. COnflicting studies about whether it happens earlier or

normal with RSS/SGA kids. But studies vary with how to measure,

control groups versus not, etc. Difficult. But all do seem to agree

on two things: one that even if puberty is occuring statistically

at a " normal " age range for our kids, it is still EARLY for their

bone age; and 2) that our kids' growth patterns are different.

Puberty is EVIL for our kids in that the bone age advances to

rapidly and the growth peak occurs earlier and faster, and bone

plates then fuse faster -- a delayed bone age does NOT mean more

growing time, and if puberty occurs too soon when the child is

still " short " , it can spell disaster.

4) Cognitive/School. Oh, I could go on and on. Again conflicting

studies/results, and such a pain in how they measure. But some

common themes -- head size is key; when the head size is

more " normal " you have less of a problem -- this means that for RSS

kids whose head sizes are usually in the normal range, they may have

less of a problem; smaller head sizes are linked to less

cognitiveyly; however, most of the studies found that even when the

study found the RSS/SGA kids were statistically cognitively or

learning " less " (can't think of the right word), it wasn't enough of

a difference to make their life, education, or social status

different. Several studies also brought up the issue of untreated

hypoglcyemia and say this is critical -- avoid nighttime

hypoglycemia at ANY cost!!! (even if it means getting up at night,

or putting a g-tube in, to these guys).

My brain is coming to a halt now. But you can see there is a lot of

good info coming out now. One other reason why our division at

MAGIC is now going to be called the RSS/SGA Division!!! More on

that later. Have to get to Brownies.

Bye for now! Salem

[Guest guest]

Thanks, , for doing this research, even with kids in tow! I'm

interested in the articles on Arimidex and adrenarche. How do we

access the MAGIC Library Log?

- Joe

> OK guys, I really should be doing this every 6 months, but it has

> been a year!!! I spent a lot of hours searching PubMed for ANY

> medical journal article published on RSS or SGA OR IUGR with key

> words like growth hormone, adrenarche, appetite, asymmetry, and more.

>

> Then I went to UCLA's BioMed Library and went through their stacks

> of medical journals, and then xeroxed them all.... for 3.5 hours

> with both kids -- let's say we won't take them next time!!! ARGGH!

> How do you explain that even whispering is not really allowed in a

> medical library!!!

>

> I am first reading the articles and entering key data into a

> database that I will use for the writing of our upcoming firstever

> RSS/SGA Guidebook (hope to be published by the convention - thanks

> to donors who have donated more than $8,000 for its creation!)

>

> However, I will also log most of these into our MAGIC Library Log

> and they will be available to all of you who are members for no

> charge. The Library Log will also continue to have a Summary

> section which gives in a nutshell what each study has found.

>

> I haven't read through all the articles, but here is a smattering of

> tickling info.....

>

> 1) Growth Hormone and RSS/SGA Kids: WOW -- definitely improves

> final adult height; every study is finding it lowers blood pressure

> (and keeps the blood pressure lower even after disctd; increases BMI

> and weight; increases muscle mass; BUT the bad is that it can also

> increase the insulin levels which makes hypoglycemia more

> problematic. The good news is that this goes away within 6 months

> of GHT being discontinued. "

>

> 2) Adrenarche. I found several articles published on the use of

> products like Arimidex (the drug that Dr. Harbison is using to

> postpone adrenarche) to postpone adrenarche. Very interesting ideas

> these physicians/scientists are using -- it is showing that post-

> posting adrenarche may be a key thing for our kids -- if we can

> postpone adrenarche we may not need to postpone puberty, because

> puberty would then happen at a more normal time allowing more time

> to grow.

>

> 3) Puberty. COnflicting studies about whether it happens earlier or

> normal with RSS/SGA kids. But studies vary with how to measure,

> control groups versus not, etc. Difficult. But all do seem to agree

> on two things: one that even if puberty is occuring statistically

> at a " normal " age range for our kids, it is still EARLY for their

> bone age; and 2) that our kids' growth patterns are different.

> Puberty is EVIL for our kids in that the bone age advances to

> rapidly and the growth peak occurs earlier and faster, and bone

> plates then fuse faster -- a delayed bone age does NOT mean more

> growing time, and if puberty occurs too soon when the child is

> still " short " , it can spell disaster.

>

> 4) Cognitive/School. Oh, I could go on and on. Again conflicting

> studies/results, and such a pain in how they measure. But some

> common themes -- head size is key; when the head size is

> more " normal " you have less of a problem -- this means that for RSS

> kids whose head sizes are usually in the normal range, they may have

> less of a problem; smaller head sizes are linked to less

> cognitiveyly; however, most of the studies found that even when the

> study found the RSS/SGA kids were statistically cognitively or

> learning " less " (can't think of the right word), it wasn't enough of

> a difference to make their life, education, or social status

> different. Several studies also brought up the issue of untreated

> hypoglcyemia and say this is critical -- avoid nighttime

> hypoglycemia at ANY cost!!! (even if it means getting up at night,

> or putting a g-tube in, to these guys).

>

>

> My brain is coming to a halt now. But you can see there is a lot of

> good info coming out now. One other reason why our division at

> MAGIC is now going to be called the RSS/SGA Division!!! More on

> that later. Have to get to Brownies.

>

> Bye for now! Salem

[Guest guest]

Call MAGIC and ask for the latest MAGIC Library Log. Then read

through it, pick the ID numbers you want, and let MAGIC know. But

you got to give me about 2 weeks to finish reading the articles and

logging them in.... hee hee js

> > OK guys, I really should be doing this every 6 months, but it

has

> > been a year!!! I spent a lot of hours searching PubMed for ANY

> > medical journal article published on RSS or SGA OR IUGR with key

> > words like growth hormone, adrenarche, appetite, asymmetry, and

more.

> >

> > Then I went to UCLA's BioMed Library and went through their

stacks

> > of medical journals, and then xeroxed them all.... for 3.5 hours

> > with both kids -- let's say we won't take them next time!!!

ARGGH!

> > How do you explain that even whispering is not really allowed in

a

> > medical library!!!

> >

> > I am first reading the articles and entering key data into a

> > database that I will use for the writing of our upcoming

firstever

> > RSS/SGA Guidebook (hope to be published by the convention -

thanks

> > to donors who have donated more than $8,000 for its creation!)

> >

> > However, I will also log most of these into our MAGIC Library

Log

> > and they will be available to all of you who are members for no

> > charge. The Library Log will also continue to have a Summary

> > section which gives in a nutshell what each study has found.

> >

> > I haven't read through all the articles, but here is a

smattering of

> > tickling info.....

> >

> > 1) Growth Hormone and RSS/SGA Kids: WOW -- definitely improves

> > final adult height; every study is finding it lowers blood

pressure

> > (and keeps the blood pressure lower even after disctd; increases

BMI

> > and weight; increases muscle mass; BUT the bad is that it can

also

> > increase the insulin levels which makes hypoglycemia more

> > problematic. The good news is that this goes away within 6

months

> > of GHT being discontinued. "

> >

> > 2) Adrenarche. I found several articles published on the use of

> > products like Arimidex (the drug that Dr. Harbison is using to

> > postpone adrenarche) to postpone adrenarche. Very interesting

ideas

> > these physicians/scientists are using -- it is showing that post-

> > posting adrenarche may be a key thing for our kids -- if we can

> > postpone adrenarche we may not need to postpone puberty, because

> > puberty would then happen at a more normal time allowing more

time

> > to grow.

> >

> > 3) Puberty. COnflicting studies about whether it happens

earlier or

> > normal with RSS/SGA kids. But studies vary with how to measure,

> > control groups versus not, etc. Difficult. But all do seem to

agree

> > on two things: one that even if puberty is occuring

statistically

> > at a " normal " age range for our kids, it is still EARLY for

their

> > bone age; and 2) that our kids' growth patterns are different.

> > Puberty is EVIL for our kids in that the bone age advances to

> > rapidly and the growth peak occurs earlier and faster, and bone

> > plates then fuse faster -- a delayed bone age does NOT mean more

> > growing time, and if puberty occurs too soon when the child is

> > still " short " , it can spell disaster.

> >

> > 4) Cognitive/School. Oh, I could go on and on. Again

conflicting

> > studies/results, and such a pain in how they measure. But some

> > common themes -- head size is key; when the head size is

> > more " normal " you have less of a problem -- this means that for

RSS

> > kids whose head sizes are usually in the normal range, they may

have

> > less of a problem; smaller head sizes are linked to less

> > cognitiveyly; however, most of the studies found that even when

the

> > study found the RSS/SGA kids were statistically cognitively or

> > learning " less " (can't think of the right word), it wasn't

enough of

> > a difference to make their life, education, or social status

> > different. Several studies also brought up the issue of

untreated

> > hypoglcyemia and say this is critical -- avoid nighttime

> > hypoglycemia at ANY cost!!! (even if it means getting up at

night,

> > or putting a g-tube in, to these guys).

> >

> >

> > My brain is coming to a halt now. But you can see there is a

lot of

> > good info coming out now. One other reason why our division at

> > MAGIC is now going to be called the RSS/SGA Division!!! More on

> > that later. Have to get to Brownies.

> >

> > Bye for now! Salem