J's great advice for

[Guest guest]

J just gave great advice!!!!

I completely forgot about 's note about the C02. When our

daughter was being tested for failure to thrive, we must have spent

2 months going through the nephrology and metabolic divisions at

Yale Children's, because she was spilling ketones and her C02 levels

were too high.

Found out later that she was undoubtedly hypoglycemic from going too

long at night without eating, plus she had a bladder infection (how

would we know she was 15 months old) and infections in these kids

can cause their bodies to go haywire).

, good luck!!!! Please stay in touch and let us know. And we

hope to meet you and your wonderful daughter in Chicago.

> > Hello everyone,

> >

> > I am new here and our 15 mo old may possibly have RSS. She has

seen

> > a geneticist who never mentioned RSS to me but did in the letter

she

> > sent to my pediatrician as a possibility (got the copy today).

She

> > also has seen an endocrinologist and her electrolytes were a bit

off

> > for CO2 and still waiting for one of the growth hormone results.

> >

> > She was IUGR (among many other worries brought to our attention

by

> > the level 2 ultrasound specialist - including possible dwarfism

which

> > appears RSS may be?) and born at 37 wks. 4lb 6oz, 16.25 inches.

She

> > has hypotonia (low muscle tone), has trouble eating (but eats),

a big

> > forehead and small mouth, crowded teeth, and turned in 5th

finger.

> >

> > I've been online for 2 hours and it seems that each case

presents

> > differently. I am going to talk to the pediatrician tomorrow

but any

> > suggestions? Did anyone else have similar symptoms presented?

> >

> > I apologize jumping in prematurely as this is still a maybe.

> >

> > I hope all your kids are doing well and would appreciate any

advice.

> >

> > Thanks!

> >

> >

> >

>

> >