Does my daughter have RSS?

August 6, 2004

I am new to this support group. My daughter has not yet been

diagnosed with RSS but we are looking into it. I have some questions

for anyone who can answer. Mia was born at 36 weeks and weighed 3lbs

12oz. She is now 21 months old. She has been to numerous doctors

for her growth and delayed motor skills. The endo was checking her

for s, one doctor said constitutional short stature, the

genetist checked her thyroid, etc. I did some research and read

about RSS.

Mia has never been on the growth chart (she is 17 pounds now and

about 26 inches). She started to walk now (at 21 months), she has

cafe aulait spot on her shoulder, curved fifth finger, slow closing

soft spot, small chin, reflux at birth, food aversions, had sucking

problems, fluid in ears continual (though never an ear infection).

She has low muscle tone (she has been going to PT, OT and feeding

therapy for almost one year.) Though she has never been on the growth

chart for height or weight her head is in the 5th percentile. She had

a bone age test at 15 months and she tested about 9 months. Some

other things: she had no teeth until 17 months old and has a dimple

on the tip of her nose.

I called her endo and asked if he thought Mia could have RSS. He had

us come in for blood work. (Me, my husband and Mia) He called us

about a month later and said the molecular study was normal and to

come in as scheduled when she turns two to check her growth. He told

us we should decide on growth hormones at that time.

Is the blood test a definitive test to rule out RSS? Could Mia still

have it? What should I do next?

I'm sorry this email is so long, but I have been anxious over this

and want to do what is right for her. Oh, by the way I have 3 other

children who are all between the 75th and 95th percentile for height

and weight! Thanks to anyone who read this! nne

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