Re: Hello to Sheila

[Guest guest]

Hello Sheila

My name is Charlene and I'm actually still quite new too - past few

weeks. Welcome! At the risk of repeating anybody elses sentiment

this is a great place to be. There is an incredible network of

knowledge and support among these folk. Tell us a bit more about

Lizzie: what is her height / weight now, is she a good eater, etc?

Looking forward to getting to know you better. My son's name is

and he is 4 1/2 years old.

Charlene

>

> 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

>