New to the group - Sheila

[Guest guest]

Hello all!

Quick little intro about my little girl...

Lizzie is 7 years old, she was born at 32 weeks 1 lb 12 oz, Severe

IUGR. Our first family Dr. for the first 2-3 years of her life when

she didn't seem to be growing at all only suggested that I have her

drink plenty of whole milk to grow. At 3 we switched to a

pediatrition who had a complete blood workup done, chromosome

testing, and bone age x-rays, and then referred us to the local ped.

endocrinologist, who has been treating her with Genotropin for the

last 3.5 years. We experienced good catch up growth the first year

on the GH, but it has steadily declined since then to having large

periods of time with little or no growth even though on the GH. The

local endo referred us to Children's Mercy in KC for a 2nd opinion.

The KC ped endo was suprised that a number of tests had never been

done on Lizzie, so we immediately did a blood draw for a new set of

labs, bone age x-ray, and kidney sonogram. Her MRI is scheduled for

next week. At the 2nd opinion appt last week, the endo said she

exhibited many of the characteristics of RSS. It is something I had

thought that she had when we first started researching all of the

growth issues back 3 years ago, but our local ped endo here in town

didn't think so, and also didn't think it was important to do an MRI

before starting GHT... (long story about the local ped endo, but an

experience my friend had with him regarding her daughter was enough

to tell me I didn't want him as our Dr either). We have new health

insurance, and they will not pay for the Genotropin any more,

instead their drug of choice is Tev-Tropin. We get out first

shipment in later today, this will be a new experience, giving daily

shots with needle/syringe instead of the Pen Device.

Aside from the medical stuff, Lizzie has 2 brothers, 5 and 18 months

(who were also preemies, but do not appear to have any growth

issues) and another sibling on the way (I'm only 11 weeks, so we do

not know yet if it is a little sister or brother).

I've rambled on enough, lol!

Sheila