Re: Toes. Also, mild RSS defn

[Guest guest]

Hi everyone,,, speaking on toes and such,

Natasha's big toes are both curved upwards with upwards nails. She also has

sacral dimples. I sure hope to get a diagnosis soon. It is really maddening

sometimes. She loves being a little person. Says she wants to stay little.

I dont want to let her down. What if this is just a glich.lol She is so

funny. She identifies totally with all her little friends and differently

abled buddies. Sees no difference. Reallly nice.

Natasha has many of the markers, yet her genetisist is not in a hurry to put

a label on her syndromic stuff. He tells me he doesnt like labels. But

unfortunatly, it will be hard to get medical care and any special services

she may need in school without one. It is a toss up really.

Still searching,,, BTW you are all wonderful. I love this group. Thanks

everyone.

Ann- Natasha- 4.3 years old,,, 35 inches 27 pounds,,, IUGR,,, RSS???

Sonoma COunty California,,, anyone in Northern California?

In a message dated 4/1/00 7:32:31 PM Pacific Standard Time, badt@...

writes:

<< While we are on the subject of toes:

's feet also have curved toes (the 2nd and third toes overlap and and the

fourth bends upward--on both feet). I'm curious to learn if that is another

RSS

marker? He also has the curved pinkies (which, by the way, went undiagnosed

by

a neurologist, GI at Philly Childrens Hospital and Head of GI at Boston

Childrens Hospital. Only the geneticist and Dr. H. picked it up.) So, I

would

definitely have a geneticist check the pinkies. I they are the best

qualified.

By the way, some of you have asked what " mild " RSS would be. My unscientific

definition would be a child who shows signs of RSS, but is still hovering at

the

lower spectrum of the growth chart--below the 5th percentile--but close

enough

to almost touch it. Also, does not have the severe reflux or feeding

issues. If he hadn't reacted well to the Periactin I'm sure his weight would

never have picked up and he would be on a feeding tube.

For those of you interested, here's how Dr. H. wrote up her diagnosis of

's

RSS. I'm embarassed to say I don't know what all the terms mean (e.g.

cutaneous

stigmata)...But, the write-up may help explain why Dr. H. told us it was

" mild "

RSS.

" This is a 29 month old male patient who has the hands, midface, muscle mass

and

sacral dimples of an RSS child. He is not assymetric. He was not SGA at

birth. He does not have the dental or cutaneous stigmata of RSS. His

weight to

height ratio is better than the typical RSS patients. My overall impression

is

that he does have RSS. He has grown better than usual because of his size at

birth and his good weight gain rate. " -Dr.H.

Katy

Mom to , 3 years, 3 months, 28 pounds, 35.5 "

>>