Re: Maxi doesn't have RSS....

[Guest guest]

-I know how you feel, kind of out of the RSS loop...my does

not have RSS and he is just SGA. As far as I understand he will have

basically the same Tx. as an RSS child but, I'm not sure if at some

point he will catch up to his peers or if he is expected to be a

short statured adult. Still very confused at this point and trying to

figure out how to see Dr. H. agian so we can get on the ght protocall

which will not be availiable here in Canada.

It was so great to meet with some of you at the convention and I

would love to stay with this listserve because of all the wonderful

support you have all shown.

Barb, mom of

(the little fireball with the red hair, who is also a triplet).

-- In RSS-Support , " revamymarie "

wrote:

> Hi All,

>

> For those of you at the convention, you already know this. For

> everyone else...well, actually, we are kind of starting from

> scratch. The difference is we have MAGIC behind us this time. I

> figure we will still stay with the RSS list serve, as so many of

his

> issues are still the same, and he is growing right on the mean for

> an RSS child. According to DR. H. and another endocrinologist at

the

> convention, a Doctor Berceu, he has metabolic growth failure.

Doctor

> H believes that metabolic studies have to be done and Dr. Bercue

> believes that the provocative or stim testing should be done,

> immediately. They both are concerned with his nightime feeding and

> continual blood sugar crashing, so we start again. Evidently those

> screwed up lab tests I complained about so many times to all of

you,

> actually meant something to these doctors, namely that he didn't

> have RSS, but something else was definitely going on, and at the

> very least, he is growth hormone deficient. On a scarier note, in

> going over his medical records with the second doctor, he pointed

> out something that I had missed before. Maxi has a partial

ageniesis

> of the corpus collosum, I knew that, but in the same report, it

also

> says he has smaller than usual optic nerves. It specifically states

> he doesn't have optic nerve hypoplasia(small optic nerves) but says

> in plain english that he has small optic nerves. Confusing huh? The

> second endo wants this checked again, because it could mean that we

> are looking at another diagnosis, called Septo-Optic Displasia. I

> don't really want to think about this, but I didn't even know it

> exisited, other than as some other branch of MAGIC, and certainly

> didn't know that my child might be affected by it. That in itself

is

> kind of scary. But it is also maddening, listening to these doctors

> at the convention, ring all these bells and whistles while I have

> been fighting with the idiots here at home. I live in the Nation's

> Capital and I don't seem to be able to find adequate medical care.

> Well, MAGIC did help with that. There is a doc in Fredricsberg that

> I am told will listen(Deno s of Magic said he would even help

> me get to this guy if I needed him to), and there are the two docs

> in New York that Dr. H. referred us to, and if all else fails,

there

> is the second endo that looked at Maxi, who is in Florida who said

> to bring him there. So while we do have a starting point, it is

> overwhelming. Thank You all for being here, and especially to

> , Katy, Jodi, 's parents, and Dr. H., we might

> actually get Maxi the help he needs. The convention was the right

> place to be at the right time. Dr. H said the metabolic thing has

to

> be taken care of, we are so lucky that we haven't hit some crisis,

> yet... makes me feel so secure(not) but also grateful, grateful

that

> maybe we will finally see some action for Maxi, before he has a

> major problem, which as I stated many a times before was a fear of

> mine.

>

> Now, on a lighter note, the worst thing I heard at the convention...

>

> " Maxi bit me " (sincerest apologies to and )

>

> The most common thing I heard at the convention...

>

> " _______ put Maxi down " (substitute your child or his brother's or

> sister's name here).

>

>

> My sincerest thanks to

> who took it upon himself to be Maxi's big brother at

> the convention, and to his Mom, Dale, who made sure I felt included

> in everything, especially after considering Maxi isn't RSS ( I did

> feel displaced, kind of). I made so many wonderful friends, got to

> names with faces, and finally got at least one answer in Regards to

> Maxi. Thank You all, and a big hug all around!

>

>

> Hugs,

>

> AmyMarie

[Guest guest]

-I know how you feel, kind of out of the RSS loop...my does

not have RSS and he is just SGA. As far as I understand he will have

basically the same Tx. as an RSS child but, I'm not sure if at some

point he will catch up to his peers or if he is expected to be a

short statured adult. Still very confused at this point and trying to

figure out how to see Dr. H. agian so we can get on the ght protocall

which will not be availiable here in Canada.

It was so great to meet with some of you at the convention and I

would love to stay with this listserve because of all the wonderful

support you have all shown.

Barb, mom of

(the little fireball with the red hair, who is also a triplet).

-- In RSS-Support , " revamymarie "

wrote:

> Hi All,

>

> For those of you at the convention, you already know this. For

> everyone else...well, actually, we are kind of starting from

> scratch. The difference is we have MAGIC behind us this time. I

> figure we will still stay with the RSS list serve, as so many of

his

> issues are still the same, and he is growing right on the mean for

> an RSS child. According to DR. H. and another endocrinologist at

the

> convention, a Doctor Berceu, he has metabolic growth failure.

Doctor

> H believes that metabolic studies have to be done and Dr. Bercue

> believes that the provocative or stim testing should be done,

> immediately. They both are concerned with his nightime feeding and

> continual blood sugar crashing, so we start again. Evidently those

> screwed up lab tests I complained about so many times to all of

you,

> actually meant something to these doctors, namely that he didn't

> have RSS, but something else was definitely going on, and at the

> very least, he is growth hormone deficient. On a scarier note, in

> going over his medical records with the second doctor, he pointed

> out something that I had missed before. Maxi has a partial

ageniesis

> of the corpus collosum, I knew that, but in the same report, it

also

> says he has smaller than usual optic nerves. It specifically states

> he doesn't have optic nerve hypoplasia(small optic nerves) but says

> in plain english that he has small optic nerves. Confusing huh? The

> second endo wants this checked again, because it could mean that we

> are looking at another diagnosis, called Septo-Optic Displasia. I

> don't really want to think about this, but I didn't even know it

> exisited, other than as some other branch of MAGIC, and certainly

> didn't know that my child might be affected by it. That in itself

is

> kind of scary. But it is also maddening, listening to these doctors

> at the convention, ring all these bells and whistles while I have

> been fighting with the idiots here at home. I live in the Nation's

> Capital and I don't seem to be able to find adequate medical care.

> Well, MAGIC did help with that. There is a doc in Fredricsberg that

> I am told will listen(Deno s of Magic said he would even help

> me get to this guy if I needed him to), and there are the two docs

> in New York that Dr. H. referred us to, and if all else fails,

there

> is the second endo that looked at Maxi, who is in Florida who said

> to bring him there. So while we do have a starting point, it is

> overwhelming. Thank You all for being here, and especially to

> , Katy, Jodi, 's parents, and Dr. H., we might

> actually get Maxi the help he needs. The convention was the right

> place to be at the right time. Dr. H said the metabolic thing has

to

> be taken care of, we are so lucky that we haven't hit some crisis,

> yet... makes me feel so secure(not) but also grateful, grateful

that

> maybe we will finally see some action for Maxi, before he has a

> major problem, which as I stated many a times before was a fear of

> mine.

>

> Now, on a lighter note, the worst thing I heard at the convention...

>

> " Maxi bit me " (sincerest apologies to and )

>

> The most common thing I heard at the convention...

>

> " _______ put Maxi down " (substitute your child or his brother's or

> sister's name here).

>

>

> My sincerest thanks to

> who took it upon himself to be Maxi's big brother at

> the convention, and to his Mom, Dale, who made sure I felt included

> in everything, especially after considering Maxi isn't RSS ( I did

> feel displaced, kind of). I made so many wonderful friends, got to

> names with faces, and finally got at least one answer in Regards to

> Maxi. Thank You all, and a big hug all around!

>

>

> Hugs,

>

> AmyMarie

[Guest guest]

AmyMarie

I sincerely hope you do still hang around here. I know you are off in a

different direction. It may seem scary to you now, but at the same time,

it's probably a lifting experience (when you can catch your breathe to think

about it) that the *real* answers may be close at hand.

Whatever road you travel, be sure to hang out here. Lack of growth, is lack

of growth. The day to day issues and discussions we have will still be

relevant. And personally, as you continue to research and test Maxi I am

interested and care to see how it all works out.

So don't be a stranger and keep us informed.

I'm guessing from your email.......was Dale a figure around the pool???

She's great.......eh Dale??....she doesn't write here often but she was a

social butterfly at the convention 2 years ago and was a big help in making

this Canadian feel calm in the big U.S. of A!!!!

Debby

Maxi doesn't have RSS....

> Hi All,

>

> For those of you at the convention, you already know this. For

> everyone else...well, actually, we are kind of starting from

> scratch. The difference is we have MAGIC behind us this time. I

> figure we will still stay with the RSS list serve, as so many of his

> issues are still the same, and he is growing right on the mean for

> an RSS child. According to DR. H. and another endocrinologist at the

> convention, a Doctor Berceu, he has metabolic growth failure. Doctor

> H believes that metabolic studies have to be done and Dr. Bercue

> believes that the provocative or stim testing should be done,

> immediately. They both are concerned with his nightime feeding and

> continual blood sugar crashing, so we start again. Evidently those

> screwed up lab tests I complained about so many times to all of you,

> actually meant something to these doctors, namely that he didn't

> have RSS, but something else was definitely going on, and at the

> very least, he is growth hormone deficient. On a scarier note, in

> going over his medical records with the second doctor, he pointed

> out something that I had missed before. Maxi has a partial ageniesis

> of the corpus collosum, I knew that, but in the same report, it also

> says he has smaller than usual optic nerves. It specifically states

> he doesn't have optic nerve hypoplasia(small optic nerves) but says

> in plain english that he has small optic nerves. Confusing huh? The

> second endo wants this checked again, because it could mean that we

> are looking at another diagnosis, called Septo-Optic Displasia. I

> don't really want to think about this, but I didn't even know it

> exisited, other than as some other branch of MAGIC, and certainly

> didn't know that my child might be affected by it. That in itself is

> kind of scary. But it is also maddening, listening to these doctors

> at the convention, ring all these bells and whistles while I have

> been fighting with the idiots here at home. I live in the Nation's

> Capital and I don't seem to be able to find adequate medical care.

> Well, MAGIC did help with that. There is a doc in Fredricsberg that

> I am told will listen(Deno s of Magic said he would even help

> me get to this guy if I needed him to), and there are the two docs

> in New York that Dr. H. referred us to, and if all else fails, there

> is the second endo that looked at Maxi, who is in Florida who said

> to bring him there. So while we do have a starting point, it is

> overwhelming. Thank You all for being here, and especially to

> , Katy, Jodi, 's parents, and Dr. H., we might

> actually get Maxi the help he needs. The convention was the right

> place to be at the right time. Dr. H said the metabolic thing has to

> be taken care of, we are so lucky that we haven't hit some crisis,

> yet... makes me feel so secure(not) but also grateful, grateful that

> maybe we will finally see some action for Maxi, before he has a

> major problem, which as I stated many a times before was a fear of

> mine.

>

> Now, on a lighter note, the worst thing I heard at the convention...

>

> " Maxi bit me " (sincerest apologies to and )

>

> The most common thing I heard at the convention...

>

> " _______ put Maxi down " (substitute your child or his brother's or

> sister's name here).

>

>

> My sincerest thanks to

> who took it upon himself to be Maxi's big brother at

> the convention, and to his Mom, Dale, who made sure I felt included

> in everything, especially after considering Maxi isn't RSS ( I did

> feel displaced, kind of). I made so many wonderful friends, got to

> names with faces, and finally got at least one answer in Regards to

> Maxi. Thank You all, and a big hug all around!

>

>

> Hugs,

>

> AmyMarie

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Barb

How are things going with you getting GHT on compassionate grounds? Can you

get an endo to approve it's use......perhaps by referring to the US FDA's

approval and then approach Eli Lilly on compassionate grounds?

Let me know how that's going. How did you get to the convention? Fly? My mom

and I were reminiscing this week about our adventurous 10 hour drive 2 years

ago. I don't think we'll ever forget it. She brought it up last July as

well. One of those conversations that starts " well a year ago today we were "

and now it was " well 2 years ago today we were........ "

Debby

Re: Maxi doesn't have RSS....

> -I know how you feel, kind of out of the RSS loop...my does

> not have RSS and he is just SGA. As far as I understand he will have

> basically the same Tx. as an RSS child but, I'm not sure if at some

> point he will catch up to his peers or if he is expected to be a

> short statured adult. Still very confused at this point and trying to

> figure out how to see Dr. H. agian so we can get on the ght protocall

> which will not be availiable here in Canada.

> It was so great to meet with some of you at the convention and I

> would love to stay with this listserve because of all the wonderful

> support you have all shown.

>

> Barb, mom of

> (the little fireball with the red hair, who is also a triplet).

>

>

>

> -- In RSS-Support , " revamymarie "

> wrote:

> > Hi All,

> >

> > For those of you at the convention, you already know this. For

> > everyone else...well, actually, we are kind of starting from

> > scratch. The difference is we have MAGIC behind us this time. I

> > figure we will still stay with the RSS list serve, as so many of

> his

> > issues are still the same, and he is growing right on the mean for

> > an RSS child. According to DR. H. and another endocrinologist at

> the

> > convention, a Doctor Berceu, he has metabolic growth failure.

> Doctor

> > H believes that metabolic studies have to be done and Dr. Bercue

> > believes that the provocative or stim testing should be done,

> > immediately. They both are concerned with his nightime feeding and

> > continual blood sugar crashing, so we start again. Evidently those

> > screwed up lab tests I complained about so many times to all of

> you,

> > actually meant something to these doctors, namely that he didn't

> > have RSS, but something else was definitely going on, and at the

> > very least, he is growth hormone deficient. On a scarier note, in

> > going over his medical records with the second doctor, he pointed

> > out something that I had missed before. Maxi has a partial

> ageniesis

> > of the corpus collosum, I knew that, but in the same report, it

> also

> > says he has smaller than usual optic nerves. It specifically states

> > he doesn't have optic nerve hypoplasia(small optic nerves) but says

> > in plain english that he has small optic nerves. Confusing huh? The

> > second endo wants this checked again, because it could mean that we

> > are looking at another diagnosis, called Septo-Optic Displasia. I

> > don't really want to think about this, but I didn't even know it

> > exisited, other than as some other branch of MAGIC, and certainly

> > didn't know that my child might be affected by it. That in itself

> is

> > kind of scary. But it is also maddening, listening to these doctors

> > at the convention, ring all these bells and whistles while I have

> > been fighting with the idiots here at home. I live in the Nation's

> > Capital and I don't seem to be able to find adequate medical care.

> > Well, MAGIC did help with that. There is a doc in Fredricsberg that

> > I am told will listen(Deno s of Magic said he would even help

> > me get to this guy if I needed him to), and there are the two docs

> > in New York that Dr. H. referred us to, and if all else fails,

> there

> > is the second endo that looked at Maxi, who is in Florida who said

> > to bring him there. So while we do have a starting point, it is

> > overwhelming. Thank You all for being here, and especially to

> > , Katy, Jodi, 's parents, and Dr. H., we might

> > actually get Maxi the help he needs. The convention was the right

> > place to be at the right time. Dr. H said the metabolic thing has

> to

> > be taken care of, we are so lucky that we haven't hit some crisis,

> > yet... makes me feel so secure(not) but also grateful, grateful

> that

> > maybe we will finally see some action for Maxi, before he has a

> > major problem, which as I stated many a times before was a fear of

> > mine.

> >

> > Now, on a lighter note, the worst thing I heard at the convention...

> >

> > " Maxi bit me " (sincerest apologies to and )

> >

> > The most common thing I heard at the convention...

> >

> > " _______ put Maxi down " (substitute your child or his brother's or

> > sister's name here).

> >

> >

> > My sincerest thanks to

> > who took it upon himself to be Maxi's big brother at

> > the convention, and to his Mom, Dale, who made sure I felt included

> > in everything, especially after considering Maxi isn't RSS ( I did

> > feel displaced, kind of). I made so many wonderful friends, got to

> > names with faces, and finally got at least one answer in Regards to

> > Maxi. Thank You all, and a big hug all around!

> >

> >

> > Hugs,

> >

> > AmyMarie

>

>

>

>

>

>

[Guest guest]

Thanks Debbie,

How was your surgery? Are you o.k., we just got home yesterday. Maxi

really needed a day to chill out, getting him on a plane on Sunday

would have been a disaster, I am glad the tickets worked out the way

they did, he really needed time to calm down.

Yes, I met Dale at the pool, and she is great! Dale, we are talking

about you! Anyway, my husband, , is finding all of this

overwhelming as well. Hopefully, when we get over the information

overload, we will be able to do more for Maxi. I really want to hear

that you are o.k., so please let us know.

Hugs,

AmyMarie

> AmyMarie

> I sincerely hope you do still hang around here. I know you are off

in a

> different direction. It may seem scary to you now, but at the same

time,

> it's probably a lifting experience (when you can catch your

breathe to think

> about it) that the *real* answers may be close at hand.

> Whatever road you travel, be sure to hang out here. Lack of

growth, is lack

> of growth. The day to day issues and discussions we have will

still be

> relevant. And personally, as you continue to research and test

Maxi I am

> interested and care to see how it all works out.

> So don't be a stranger and keep us informed.

> I'm guessing from your email.......was Dale a figure around the

pool???

> She's great.......eh Dale??....she doesn't write here often but

she was a

> social butterfly at the convention 2 years ago and was a big help

in making

> this Canadian feel calm in the big U.S. of A!!!!

>

> Debby

>

>

> Maxi doesn't have RSS....

>

>

> > Hi All,

> >

> > For those of you at the convention, you already know this. For

> > everyone else...well, actually, we are kind of starting from

> > scratch. The difference is we have MAGIC behind us this time. I

> > figure we will still stay with the RSS list serve, as so many of

his

> > issues are still the same, and he is growing right on the mean

for

> > an RSS child. According to DR. H. and another endocrinologist at

the

> > convention, a Doctor Berceu, he has metabolic growth failure.

Doctor

> > H believes that metabolic studies have to be done and Dr. Bercue

> > believes that the provocative or stim testing should be done,

> > immediately. They both are concerned with his nightime feeding

and

> > continual blood sugar crashing, so we start again. Evidently

those

> > screwed up lab tests I complained about so many times to all of

you,

> > actually meant something to these doctors, namely that he didn't

> > have RSS, but something else was definitely going on, and at the

> > very least, he is growth hormone deficient. On a scarier note, in

> > going over his medical records with the second doctor, he pointed

> > out something that I had missed before. Maxi has a partial

ageniesis

> > of the corpus collosum, I knew that, but in the same report, it

also

> > says he has smaller than usual optic nerves. It specifically

states

> > he doesn't have optic nerve hypoplasia(small optic nerves) but

says

> > in plain english that he has small optic nerves. Confusing huh?

The

> > second endo wants this checked again, because it could mean that

we

> > are looking at another diagnosis, called Septo-Optic Displasia. I

> > don't really want to think about this, but I didn't even know it

> > exisited, other than as some other branch of MAGIC, and certainly

> > didn't know that my child might be affected by it. That in

itself is

> > kind of scary. But it is also maddening, listening to these

doctors

> > at the convention, ring all these bells and whistles while I have

> > been fighting with the idiots here at home. I live in the

Nation's

> > Capital and I don't seem to be able to find adequate medical

care.

> > Well, MAGIC did help with that. There is a doc in Fredricsberg

that

> > I am told will listen(Deno s of Magic said he would even

help

> > me get to this guy if I needed him to), and there are the two

docs

> > in New York that Dr. H. referred us to, and if all else fails,

there

> > is the second endo that looked at Maxi, who is in Florida who

said

> > to bring him there. So while we do have a starting point, it is

> > overwhelming. Thank You all for being here, and especially to

> > , Katy, Jodi, 's parents, and Dr. H., we might

> > actually get Maxi the help he needs. The convention was the right

> > place to be at the right time. Dr. H said the metabolic thing

has to

> > be taken care of, we are so lucky that we haven't hit some

crisis,

> > yet... makes me feel so secure(not) but also grateful, grateful

that

> > maybe we will finally see some action for Maxi, before he has a

> > major problem, which as I stated many a times before was a fear

of

> > mine.

> >

> > Now, on a lighter note, the worst thing I heard at the

convention...

> >

> > " Maxi bit me " (sincerest apologies to and )

> >

> > The most common thing I heard at the convention...

> >

> > " _______ put Maxi down " (substitute your child or his brother's

or

> > sister's name here).

> >

> >

> > My sincerest thanks to

> > who took it upon himself to be Maxi's big brother at

> > the convention, and to his Mom, Dale, who made sure I felt

included

> > in everything, especially after considering Maxi isn't RSS ( I

did

> > feel displaced, kind of). I made so many wonderful friends, got

to

> > names with faces, and finally got at least one answer in Regards

to

> > Maxi. Thank You all, and a big hug all around!

> >

> >

> > Hugs,

> >

> > AmyMarie

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

AmyMarie

I'm not recouping as well as I should. I was doing OK and actually had a

couple of nights (last Friday and Sat. night) where I slept more than 4

hours in a row, but my X husband refuses to allow my daughter out of the

swim lessons he booked before I found out the surgery was a go......so she's

not here this week to help me and I miss it!!!

I do have my mom and neighbours, but I'm not about to ask someone to come

over and make Adam's toast (he only likes it the way I do LOL) or to tidy up

the kitchen etc. etc. so I've been doing it and I am in pain!!!!!!

It's really frustrating to have a set back.

I had Adam at his very first psychiatrist appt. yesterday. We are coming up

with a plan to help with teasing and the eventual time when his peers begin

puberty (he's going into grade 6 in Sept!!) and the fact that he won't. I

really like this lady and was impressed with our first appt.

Unfortunately walking back and forth around the entire hospital a few times

(and I didn't take my walker, my dad drove and stupid me figured " oh I'll be

fine " .......ha!) made this poor back hurt even worse!!

I'm serious AmyMarie, I want you to hang around and keep us up to date on

Maxi. We become a real family here so fast......and it is soooo much more

exciting once you've met someone (I WILL be down for next year's

convention!!!!). We care and want you to keep us up to date on dear Maxi.

All my best and thanks for asking how I'm doing. At this rate, I don't know

if I'll be ready to set up a new classroom at a new school in the end of

August. I've got a lot on my plate.

Take care and I'm glad you got to see Dr. H. It's overwhelming and odd but

you came away with a greater understanding of what you need to do next for

Maxi.........and that was well worth the trip itself!!!!

Debby

Maxi doesn't have RSS....

> >

> >

> > > Hi All,

> > >

> > > For those of you at the convention, you already know this. For

> > > everyone else...well, actually, we are kind of starting from

> > > scratch. The difference is we have MAGIC behind us this time. I

> > > figure we will still stay with the RSS list serve, as so many of

> his

> > > issues are still the same, and he is growing right on the mean

> for

> > > an RSS child. According to DR. H. and another endocrinologist at

> the

> > > convention, a Doctor Berceu, he has metabolic growth failure.

> Doctor

> > > H believes that metabolic studies have to be done and Dr. Bercue

> > > believes that the provocative or stim testing should be done,

> > > immediately. They both are concerned with his nightime feeding

> and

> > > continual blood sugar crashing, so we start again. Evidently

> those

> > > screwed up lab tests I complained about so many times to all of

> you,

> > > actually meant something to these doctors, namely that he didn't

> > > have RSS, but something else was definitely going on, and at the

> > > very least, he is growth hormone deficient. On a scarier note, in

> > > going over his medical records with the second doctor, he pointed

> > > out something that I had missed before. Maxi has a partial

> ageniesis

> > > of the corpus collosum, I knew that, but in the same report, it

> also

> > > says he has smaller than usual optic nerves. It specifically

> states

> > > he doesn't have optic nerve hypoplasia(small optic nerves) but

> says

> > > in plain english that he has small optic nerves. Confusing huh?

> The

> > > second endo wants this checked again, because it could mean that

> we

> > > are looking at another diagnosis, called Septo-Optic Displasia. I

> > > don't really want to think about this, but I didn't even know it

> > > exisited, other than as some other branch of MAGIC, and certainly

> > > didn't know that my child might be affected by it. That in

> itself is

> > > kind of scary. But it is also maddening, listening to these

> doctors

> > > at the convention, ring all these bells and whistles while I have

> > > been fighting with the idiots here at home. I live in the

> Nation's

> > > Capital and I don't seem to be able to find adequate medical

> care.

> > > Well, MAGIC did help with that. There is a doc in Fredricsberg

> that

> > > I am told will listen(Deno s of Magic said he would even

> help

> > > me get to this guy if I needed him to), and there are the two

> docs

> > > in New York that Dr. H. referred us to, and if all else fails,

> there

> > > is the second endo that looked at Maxi, who is in Florida who

> said

> > > to bring him there. So while we do have a starting point, it is

> > > overwhelming. Thank You all for being here, and especially to

> > > , Katy, Jodi, 's parents, and Dr. H., we might

> > > actually get Maxi the help he needs. The convention was the right

> > > place to be at the right time. Dr. H said the metabolic thing

> has to

> > > be taken care of, we are so lucky that we haven't hit some

> crisis,

> > > yet... makes me feel so secure(not) but also grateful, grateful

> that

> > > maybe we will finally see some action for Maxi, before he has a

> > > major problem, which as I stated many a times before was a fear

> of

> > > mine.

> > >

> > > Now, on a lighter note, the worst thing I heard at the

> convention...

> > >

> > > " Maxi bit me " (sincerest apologies to and )

> > >

> > > The most common thing I heard at the convention...

> > >

> > > " _______ put Maxi down " (substitute your child or his brother's

> or

> > > sister's name here).

> > >

> > >

> > > My sincerest thanks to

> > > who took it upon himself to be Maxi's big brother at

> > > the convention, and to his Mom, Dale, who made sure I felt

> included

> > > in everything, especially after considering Maxi isn't RSS ( I

> did

> > > feel displaced, kind of). I made so many wonderful friends, got

> to

> > > names with faces, and finally got at least one answer in Regards

> to

> > > Maxi. Thank You all, and a big hug all around!

> > >

> > >

> > > Hugs,

> > >

> > > AmyMarie

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Barb-

I know how you feel, still confused myself, I think we may be in the same

boat. Dr. H was not too sure Quetzie(2 yrs. 15 lbs. the little curly haired

one

that did not sit for a second!) has RSS either. Way too strong, and chunky

thighs, I was so excited, she just grew those!!! (She gets that from me). She

has outgrown her facial features, although Dr. agreed her infant pictures

appeared RSS, she does have RSS hands and feet according to Dr.H. Anyway, I am

in

the process of organizing her growth on spread sheet, then Dr. H will give me

her opiniopn. I'm anxious to hear. Also, anxious to get on GHT, relieved

Dr. H did not recommend a g-tube, I was almost sure she needed the

calories....we'll see.

I hope to go to NY over my winter school break. For now, we'll just have to

wait and see.

Mom to Quetzie

[Guest guest]

Please stay with the listserve! We are the RSS/SGA division and

's issues are very similar. I remember seeing , he was

soooo cute.

F.

> > Hi All,

> >

> > For those of you at the convention, you already know this. For

> > everyone else...well, actually, we are kind of starting from

> > scratch. The difference is we have MAGIC behind us this time. I

> > figure we will still stay with the RSS list serve, as so many of

> his

> > issues are still the same, and he is growing right on the mean

for

> > an RSS child. According to DR. H. and another endocrinologist at

> the

> > convention, a Doctor Berceu, he has metabolic growth failure.

> Doctor

> > H believes that metabolic studies have to be done and Dr. Bercue

> > believes that the provocative or stim testing should be done,

> > immediately. They both are concerned with his nightime feeding

and

> > continual blood sugar crashing, so we start again. Evidently

those

> > screwed up lab tests I complained about so many times to all of

> you,

> > actually meant something to these doctors, namely that he didn't

> > have RSS, but something else was definitely going on, and at the

> > very least, he is growth hormone deficient. On a scarier note, in

> > going over his medical records with the second doctor, he pointed

> > out something that I had missed before. Maxi has a partial

> ageniesis

> > of the corpus collosum, I knew that, but in the same report, it

> also

> > says he has smaller than usual optic nerves. It specifically

states

> > he doesn't have optic nerve hypoplasia(small optic nerves) but

says

> > in plain english that he has small optic nerves. Confusing huh?

The

> > second endo wants this checked again, because it could mean that

we

> > are looking at another diagnosis, called Septo-Optic Displasia. I

> > don't really want to think about this, but I didn't even know it

> > exisited, other than as some other branch of MAGIC, and certainly

> > didn't know that my child might be affected by it. That in itself

> is

> > kind of scary. But it is also maddening, listening to these

doctors

> > at the convention, ring all these bells and whistles while I have

> > been fighting with the idiots here at home. I live in the

Nation's

> > Capital and I don't seem to be able to find adequate medical

care.

> > Well, MAGIC did help with that. There is a doc in Fredricsberg

that

> > I am told will listen(Deno s of Magic said he would even

help

> > me get to this guy if I needed him to), and there are the two

docs

> > in New York that Dr. H. referred us to, and if all else fails,

> there

> > is the second endo that looked at Maxi, who is in Florida who

said

> > to bring him there. So while we do have a starting point, it is

> > overwhelming. Thank You all for being here, and especially to

> > , Katy, Jodi, 's parents, and Dr. H., we might

> > actually get Maxi the help he needs. The convention was the right

> > place to be at the right time. Dr. H said the metabolic thing has

> to

> > be taken care of, we are so lucky that we haven't hit some

crisis,

> > yet... makes me feel so secure(not) but also grateful, grateful

> that

> > maybe we will finally see some action for Maxi, before he has a

> > major problem, which as I stated many a times before was a fear

of

> > mine.

> >

> > Now, on a lighter note, the worst thing I heard at the

convention...

> >

> > " Maxi bit me " (sincerest apologies to and )

> >

> > The most common thing I heard at the convention...

> >

> > " _______ put Maxi down " (substitute your child or his brother's

or

> > sister's name here).

> >

> >

> > My sincerest thanks to

> > who took it upon himself to be Maxi's big brother at

> > the convention, and to his Mom, Dale, who made sure I felt

included

> > in everything, especially after considering Maxi isn't RSS ( I

did

> > feel displaced, kind of). I made so many wonderful friends, got

to

> > names with faces, and finally got at least one answer in Regards

to

> > Maxi. Thank You all, and a big hug all around!

> >

> >

> > Hugs,

> >

> > AmyMarie

[Guest guest]

Carmen doesn't have RSS either. When Dr.H said it last year, I was

devastated. Ask anyone around at that time, they'll tell you I cried

like a big ol' baby. But I still tell everyone she has RSS because

it's easier than telling them she has some misterious growth disorder

noone can figure out. Besides, the issues are the same. I get so much

support from the group. I just posted a question about hearing loss

and at least 8 replies came the first day. Now I have an armful of

questions to ask the ENT and plenty of research to do on the

internet. I plan to be here a long time.

Satonya, Carmen's (20 mos)mom

> > > Hi All,

> > >

> > > For those of you at the convention, you already know this. For

> > > everyone else...well, actually, we are kind of starting from

> > > scratch. The difference is we have MAGIC behind us this time. I

> > > figure we will still stay with the RSS list serve, as so many

of

> > his

> > > issues are still the same, and he is growing right on the mean

> for

> > > an RSS child. According to DR. H. and another endocrinologist

at

> > the

> > > convention, a Doctor Berceu, he has metabolic growth failure.

> > Doctor

> > > H believes that metabolic studies have to be done and Dr.

Bercue

> > > believes that the provocative or stim testing should be done,

> > > immediately. They both are concerned with his nightime feeding

> and

> > > continual blood sugar crashing, so we start again. Evidently

> those

> > > screwed up lab tests I complained about so many times to all of

> > you,

> > > actually meant something to these doctors, namely that he

didn't

> > > have RSS, but something else was definitely going on, and at

the

> > > very least, he is growth hormone deficient. On a scarier note,

in

> > > going over his medical records with the second doctor, he

pointed

> > > out something that I had missed before. Maxi has a partial

> > ageniesis

> > > of the corpus collosum, I knew that, but in the same report, it

> > also

> > > says he has smaller than usual optic nerves. It specifically

> states

> > > he doesn't have optic nerve hypoplasia(small optic nerves) but

> says

> > > in plain english that he has small optic nerves. Confusing huh?

> The

> > > second endo wants this checked again, because it could mean

that

> we

> > > are looking at another diagnosis, called Septo-Optic Displasia.

I

> > > don't really want to think about this, but I didn't even know

it

> > > exisited, other than as some other branch of MAGIC, and

certainly

> > > didn't know that my child might be affected by it. That in

itself

> > is

> > > kind of scary. But it is also maddening, listening to these

> doctors

> > > at the convention, ring all these bells and whistles while I

have

> > > been fighting with the idiots here at home. I live in the

> Nation's

> > > Capital and I don't seem to be able to find adequate medical

> care.

> > > Well, MAGIC did help with that. There is a doc in Fredricsberg

> that

> > > I am told will listen(Deno s of Magic said he would even

> help

> > > me get to this guy if I needed him to), and there are the two

> docs

> > > in New York that Dr. H. referred us to, and if all else fails,

> > there

> > > is the second endo that looked at Maxi, who is in Florida who

> said

> > > to bring him there. So while we do have a starting point, it is

> > > overwhelming. Thank You all for being here, and especially to

> > > , Katy, Jodi, 's parents, and Dr. H., we might

> > > actually get Maxi the help he needs. The convention was the

right

> > > place to be at the right time. Dr. H said the metabolic thing

has

> > to

> > > be taken care of, we are so lucky that we haven't hit some

> crisis,

> > > yet... makes me feel so secure(not) but also grateful, grateful

> > that

> > > maybe we will finally see some action for Maxi, before he has a

> > > major problem, which as I stated many a times before was a fear

> of

> > > mine.

> > >

> > > Now, on a lighter note, the worst thing I heard at the

> convention...

> > >

> > > " Maxi bit me " (sincerest apologies to and )

> > >

> > > The most common thing I heard at the convention...

> > >

> > > " _______ put Maxi down " (substitute your child or his brother's

> or

> > > sister's name here).

> > >

> > >

> > > My sincerest thanks to

> > > who took it upon himself to be Maxi's big brother

at

> > > the convention, and to his Mom, Dale, who made sure I felt

> included

> > > in everything, especially after considering Maxi isn't RSS ( I

> did

> > > feel displaced, kind of). I made so many wonderful friends, got

> to

> > > names with faces, and finally got at least one answer in

Regards

> to

> > > Maxi. Thank You all, and a big hug all around!

> > >

> > >

> > > Hugs,

> > >

> > > AmyMarie

[Guest guest]

Carmen doesn't have RSS either. When Dr.H said it last year, I was

devastated. Ask anyone around at that time, they'll tell you I cried

like a big ol' baby. But I still tell everyone she has RSS because

it's easier than telling them she has some misterious growth disorder

noone can figure out. Besides, the issues are the same. I get so much

support from the group. I just posted a question about hearing loss

and at least 8 replies came the first day. Now I have an armful of

questions to ask the ENT and plenty of research to do on the

internet. I plan to be here a long time.

Satonya, Carmen's (20 mos)mom

> > > Hi All,

> > >

> > > For those of you at the convention, you already know this. For

> > > everyone else...well, actually, we are kind of starting from

> > > scratch. The difference is we have MAGIC behind us this time. I

> > > figure we will still stay with the RSS list serve, as so many

of

> > his

> > > issues are still the same, and he is growing right on the mean

> for

> > > an RSS child. According to DR. H. and another endocrinologist

at

> > the

> > > convention, a Doctor Berceu, he has metabolic growth failure.

> > Doctor

> > > H believes that metabolic studies have to be done and Dr.

Bercue

> > > believes that the provocative or stim testing should be done,

> > > immediately. They both are concerned with his nightime feeding

> and

> > > continual blood sugar crashing, so we start again. Evidently

> those

> > > screwed up lab tests I complained about so many times to all of

> > you,

> > > actually meant something to these doctors, namely that he

didn't

> > > have RSS, but something else was definitely going on, and at

the

> > > very least, he is growth hormone deficient. On a scarier note,

in

> > > going over his medical records with the second doctor, he

pointed

> > > out something that I had missed before. Maxi has a partial

> > ageniesis

> > > of the corpus collosum, I knew that, but in the same report, it

> > also

> > > says he has smaller than usual optic nerves. It specifically

> states

> > > he doesn't have optic nerve hypoplasia(small optic nerves) but

> says

> > > in plain english that he has small optic nerves. Confusing huh?

> The

> > > second endo wants this checked again, because it could mean

that

> we

> > > are looking at another diagnosis, called Septo-Optic Displasia.

I

> > > don't really want to think about this, but I didn't even know

it

> > > exisited, other than as some other branch of MAGIC, and

certainly

> > > didn't know that my child might be affected by it. That in

itself

> > is

> > > kind of scary. But it is also maddening, listening to these

> doctors

> > > at the convention, ring all these bells and whistles while I

have

> > > been fighting with the idiots here at home. I live in the

> Nation's

> > > Capital and I don't seem to be able to find adequate medical

> care.

> > > Well, MAGIC did help with that. There is a doc in Fredricsberg

> that

> > > I am told will listen(Deno s of Magic said he would even

> help

> > > me get to this guy if I needed him to), and there are the two

> docs

> > > in New York that Dr. H. referred us to, and if all else fails,

> > there

> > > is the second endo that looked at Maxi, who is in Florida who

> said

> > > to bring him there. So while we do have a starting point, it is

> > > overwhelming. Thank You all for being here, and especially to

> > > , Katy, Jodi, 's parents, and Dr. H., we might

> > > actually get Maxi the help he needs. The convention was the

right

> > > place to be at the right time. Dr. H said the metabolic thing

has

> > to

> > > be taken care of, we are so lucky that we haven't hit some

> crisis,

> > > yet... makes me feel so secure(not) but also grateful, grateful

> > that

> > > maybe we will finally see some action for Maxi, before he has a

> > > major problem, which as I stated many a times before was a fear

> of

> > > mine.

> > >

> > > Now, on a lighter note, the worst thing I heard at the

> convention...

> > >

> > > " Maxi bit me " (sincerest apologies to and )

> > >

> > > The most common thing I heard at the convention...

> > >

> > > " _______ put Maxi down " (substitute your child or his brother's

> or

> > > sister's name here).

> > >

> > >

> > > My sincerest thanks to

> > > who took it upon himself to be Maxi's big brother

at

> > > the convention, and to his Mom, Dale, who made sure I felt

> included

> > > in everything, especially after considering Maxi isn't RSS ( I

> did

> > > feel displaced, kind of). I made so many wonderful friends, got

> to

> > > names with faces, and finally got at least one answer in

Regards

> to

> > > Maxi. Thank You all, and a big hug all around!

> > >

> > >

> > > Hugs,

> > >

> > > AmyMarie

[Guest guest]

AmyMarie,

GREAT LETTER!!! You make me laugh! ; )

It is so cool to know what you look like for real, instead of just in

my imagination. I am so glad that you did get SOME answers, and I am

also glad that you will stay with the group here! It was so good to

meet you! I really wish we would have had more time to talk! Maybe

next year! (As well as on here!)

Carmen

[Guest guest]

Hi ,

We saw Dr. H last year and confirmed that Tyler doesn't have RSS

(he's SGA). He has some RSS characteristics, but she described some

of the key differences: (1) he has a broad forehead, but it's

not " embossed " ; (2) his ears are not low-set; (3) his 5th finger

doesn't curve; (4) he has no asymmetry; (5) his head is somewhat

larger than his body by percentiles, but not significantly.

I keep meaning to post a picture of him so people can see what an

SGA/non-RSS child looks like in comparison to some of the other

photos. Even though he seemed like he might have had RSS based on

the description of characteristics, it made a lot of sense when she

looked directly at Tyler and told me exactly what she was looking

for.

By the way, we're still doing the same treatment as many RSS

children - he had a g-tube placed in July and started GHT in August.

Hope this gives you some idea what to look for.

> Satonya-

> If you don't mind my asking.... what was Dr. H's reasoning for a

non-RSS

> diagnosis for Carmen? Obviously, as you stated, she has similar

complications.

> What is the determing factor between RSS and someone who has many

similar

> attributes, but is non-RSS?? I understand SGA vs RSS, Isn't a

Syndrome a goup of

> characteristics after all, and someone can have only 1 trait or

have all or

> any combination in between and still fall in the syndrome, that's

the way my

> geneticist explained it anyway??? Anyone have any ideas or

knowledge here?

> With or without a RSS diagnosis, I'm stickin like glue to all of

you, as my

> husband puts it...you all at the list serve know more than all of

the doctors

> we see put together!! My endo just laughs at me because she'll

just mention

> something like " have you read about GHT.... " and I'll go into

huge dissertations

> about this or any other topic she mentions....and most of my info

comes from

> you guys....so thanks!

>

> Dazed and Confused,

> -mom to " Quetzie-Q "

>

>

>