Re: New to RSS - Chat to

[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!!

> > >

> > >

> > >

> > >