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Janet re: 5

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Hi Janet,

I don't think I replied to you before, but your is about the same size as

Storm (age 5y 10m).

He is 39 " tall and 31.5 pounds. When is her birthday?

Does she have the other RSS features? (crooked pinkies, small face, asymmetry,

etc....)

I would suggest that you see an Endocrinologist, they seem to know more about

RSS than most

geneticists do.

Sorry it took me so long to reply.

Carmen

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Hi Carmen,

It's nice to hear from you. is a little bit younger than Storm, her

birthday is in January (she's about a week younger than ).

She does (I think) have some of the RSS traits, such as, weak muscle tone,

VERY late closure of her fontanelle (she was about 4 1/2 when it finally

closed),

delayed bone age, developmental delays, missing (therefore, presumably crowded)

teeth and a sweaty head when she was younger.

She doesn't have the crooked pinkies but they are small (I compared them with

those of her 3 yr old sister) and her fingers all curl slightly which I have

seen listed as an Rss trait. She also has a simian crease in one palm (which

I think I may you may have said that Storm has?). No one has ever tried to

find any assymetry but she doesn't have any that is obvious.

The endocrinologist at our local hospital is a fairly recent arrival. He is the

one that and have seen and he does not seem terribly keen to

diagnose RSS. We will try to see him at some stage. I have written to Dr H

but I haven't had a reply yet.

I've put some photos of on one of those Growthspurts websites since

there's

not much room in the files of this group. I'll do a separate message with how

to access them after this. Maybe you can tell me whether you think she looks

RSS. I don't she does so much now but that she did when she was younger.

" Talk " to you soon,

Janet

>Hi Janet,

>I don't think I replied to you before, but your is about the same size as

Storm (age 5y 10m).

>He is 39 " tall and 31.5 pounds. When is her birthday?

>Does she have the other RSS features? (crooked pinkies, small face, asymmetry,

etc....)

>I would suggest that you see an Endocrinologist, they seem to know more about

RSS

than most

>geneticists do.

>Sorry it took me so long to reply.

>Carmen

>

>

>

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