Re: New to RSS - Chat to

[Guest guest]

Hey !

I must have missed some posts (moving this spring), and I was bummed

you weren't at convention. But I thought wasn't RSS? I

remember last convention commiserating that our kids were SGA and

not knowing what to do next. How did you get back to RSS? Did the

testing last fall show it? Just curious as I am really confused.

I am glad you finally have a firm diagnosis to go with. IS his IEP

working out? I am in the middle of a school " situation " but will

post once I work through some things. Very frustrating this year!

Beth

Mom to Matt, SGA

> > Maize

> >

> > Hello All,

> > I joined your group a week ago in hopes to educate myself a

little

> on RSS. We just had an appointment with a geneticist last week

for

> our 12 month old son, Landen. After a very thorough interview and

> exam, she stated that she felt he might have RSS. She based this

> on: his low weight (17.4#/12 months), several cafe au lait spots

on

> his trunk, large forehead, low muscle tone and enlarged liver. He

> has always been a good eater and right now is in love with table

> food! He has had physical and occupational therapy 3X week since

3

> months of age and wears glasses with prism lenses to help

strengthen

> his eyes. He is also getting fitted for ankle/foot orthotics to

> help with his muscle tone while he stands and hopefully walks.

We

> have had extensive neurological testing done (bloodwork, MRI) to

> find a reason for his low muscle tone and did not find anything.

> The geneticist will do bloodwork, bone age scan, and ultrasound on

> the liver this fall. My husband and I will also have bloodwork

done?

> >

> > Here are a few questions if anyone has time to answer?

> > 1. Does EVERY child with RSS have incurved pinkies? Landen

does

> not, but his pinkie toes are incurved.

> > 2. Are there specific characteristics that EVERY child has and

> some that are variable?

> > 3. When does the growth delay typically happen? Is it always

> prenatal onset?

> > 4. Are there any other genetic disorders that look like RSS

that

> might fit his characteristics?

> > 4. Any other advice or thoughts that I should be considering.

> >

> > Our testing is in October and then will have a follow-up with

the

> geneticist.

> >

> > Thanks for the information!

> > Cheryl Bremer

> > Warsaw, IN

> > Mother to Evan-6, Jenna-4, and Landen-1 TODAY!!

> >

> >

> >

> >

[Guest guest]

Hi Beth ,I do remember you and Matt well, talking on the floor,

and him played good together. I was told when he was 3 yr's

old that it was RSS but I was sceotical, went to the convention and

Dr. H said possible RSS??? He has alot (25) Charecteristics of it

as well as the other things, Speech sensory OCD ODD, but then the

endo here has confirmed it(MILD), I have not had a test? What test

are you talking about? We have had so much done I can't keep up lol.

I have never been told SGA of IUGR so I Don't know about this.His

IEP went really good and so far everthing is in order and to his

needs! YEAH, Well I am glad you wrote to me I am hoping to get to

the convention this year, we will have to see though. I have to get

a membership first I think Mine has ran out!! Talk to you soon

-- In RSS-

Support , " millerkaitlyn " <BethHultquist@h...> wrote:

> Hey !

>

> I must have missed some posts (moving this spring), and I was

bummed

> you weren't at convention. But I thought wasn't RSS? I

> remember last convention commiserating that our kids were SGA and

> not knowing what to do next. How did you get back to RSS? Did

the

> testing last fall show it? Just curious as I am really confused.

>

> I am glad you finally have a firm diagnosis to go with. IS his

IEP

> working out? I am in the middle of a school " situation " but will

> post once I work through some things. Very frustrating this year!

>

> Beth

> Mom to Matt, SGA

>

>

>

> > > Maize

> > >

> > > Hello All,

> > > I joined your group a week ago in hopes to educate myself a

> little

> > on RSS. We just had an appointment with a geneticist last week

> for

> > our 12 month old son, Landen. After a very thorough interview

and

> > exam, she stated that she felt he might have RSS. She based

this

> > on: his low weight (17.4#/12 months), several cafe au lait

spots

> on

> > his trunk, large forehead, low muscle tone and enlarged liver.

He

> > has always been a good eater and right now is in love with table

> > food! He has had physical and occupational therapy 3X week

since

> 3

> > months of age and wears glasses with prism lenses to help

> strengthen

> > his eyes. He is also getting fitted for ankle/foot orthotics to

> > help with his muscle tone while he stands and hopefully walks.

> We

> > have had extensive neurological testing done (bloodwork, MRI) to

> > find a reason for his low muscle tone and did not find

anything.

> > The geneticist will do bloodwork, bone age scan, and ultrasound

on

> > the liver this fall. My husband and I will also have bloodwork

> done?

> > >

> > > Here are a few questions if anyone has time to answer?

> > > 1. Does EVERY child with RSS have incurved pinkies? Landen

> does

> > not, but his pinkie toes are incurved.

> > > 2. Are there specific characteristics that EVERY child has

and

> > some that are variable?

> > > 3. When does the growth delay typically happen? Is it always

> > prenatal onset?

> > > 4. Are there any other genetic disorders that look like RSS

> that

> > might fit his characteristics?

> > > 4. Any other advice or thoughts that I should be considering.

> > >

> > > Our testing is in October and then will have a follow-up with

> the

> > geneticist.

> > >

> > > Thanks for the information!

> > > Cheryl Bremer

> > > Warsaw, IN

> > > Mother to Evan-6, Jenna-4, and Landen-1 TODAY!!

> > >

> > >

> > >

> > >