Re: osteopenia and our first visit with Dr. H

[Guest guest]

Hi nne,

Thought I'd jump in on this one since Olivia also has Osteogenesis

Imperfecta on top of RSS so I have a little bone knowledge. Please

don't put my advice in front of your doctors... You and your doctor

know Mia best.

Osteopenia is part of a progressive deterioration of the bone -->

normal, osteopenia, osteoprosis and established osteoporosis. It's

a weaking of the bone from decreased bone density. I beleive that a

T or Z score (from a bone density test) for osteoprosis is around -2

to +0.5. Olivia's Z score for example is -5.4, quite severe (and

also not reversable from diet since OI is a genetic disease)

Low bone density from Osteopenia should be able to be resolved

somewhat with calcium suppliments (they have liquid for babies and

toddlers) and weight bearing activities and exercises, swimming is

also excellent. You'll have to watch for constipation with the

calcium suppliment, especially if Mia is already on the constipated

side of things.

Please consult with your Dr. on calcium dosing before giving it to

her and finding out if he even thinks it's nessary. Ask also if you

need to be refered to an Ortho.

Hope this helps some and isn't too confusing...

Please feel free to ask any questions!

Leah, mom to , almost 10 and Olivia 5 years, 19.5 lbs, 34.5 " ,

RSS, OI, lots of meds

>

> Hi everyone, We just got back to Tampa from visiting with Dr.

> Harbison in New York. Just a little history: I have Mia who is 27

> mos and never officially dx with RSS but our endo thought it was

> slightly possible. She was 3lb 12oz and 16 " born at 36 week. Mia

> has never been on the growth chart, has clindactly and syndactyl

of

> her toes, low muscle tone, gets PT, OT and feeding therapy (she

had

> reflux and aversion to food). Her soft spot was late closing, and

> no teeth until 18mos.

>

> Dr H dx Mia as SGA/IUGR only and not RSS. Mia has more fat on her

> than RSS children. The appt went well (we were there for 3

hours).

> Dr. H feels like Mia is showing some catch up and if by age 3 she

is

> not catching up more she recommends GH. She said she is at risk

for

> early adrenarche, insulin resistance and early puberty. Her BP

was

> slightly high and wants that followed. The main question that I

> have is that Dr. H read her bone age (I brought the xray with

me).

> Her bone age was 1.35 years but she noticed what she

called " severe

> osteopenia " . I was wondering if anyone could enlighten me on this

> and what to do. It has me really worrying. Please anyone let me

> know if their child has this. Thanks so much for reading this!!

>

> nne mom to Mia SGA/IUGR 21lbs and 30 "