Re: Thanks to everyone from new girl on the block

[Guest guest]

Hi, I have a 2 yr old RSS daughter Autumn who experienced similar

health issues. She now has a g-tube and we are working on her

weight. She also gets extremely sick from a minor cold but now with

the tube I am working on helping her immune system rejuventate!

Autumn was suspected RSS at 7 mos and diagnosed a little past a year

old. Summer, my 6.5 mos old SGA daughter is suspected to have RSS by

her geneticist. so far she is healthy!!!! I have to go feed her

now...i will share more later. Thanks for sharing your story...oh, i

also have 4 kids! It's great!

mom to Autumn 2 RSS, SUmmer 6.5mos SGA poss RSS, Skye 7.5

yrs, Ocean 3.5 yrs

>

> WoW! Thanks everyone for responding. I will share a bit more

about

> ourselves. We live in Ontario, Canada and have 4 children all

> together. We have known about Silver since was

just

> over 1 year of age. He received his 'differential' diagnosis from

> the genetisist quite early, but with a great deal of reservations

as

> she is largely unfamiliar with the nature of RSS. Likewise every

> specialist we have been sent to; the paediatrician, gastro-

> enterologist, endocrhronologist, etc. have no clue what we are

> talking about. They ask us the same ridiculous question: Do you

> feed him, and tell us it's a caloric issue. Really!!!

> was born with low birth-weight, failure to thrive, etc.and

> after a really terrible pregnancy, we weren't surprised or

alarmed.

> He seemed to thrive after the first few weeks, we settled into

family

> routine and he gained some weight. At 7 months of age he dropped

> almost 1/3, or more of weight, and I noticed a few peculiarities

> about his features, facial structure, ears, etc. More of these

seem

> to appear as he gets older - Is this normal? Terrified of the

weight

> loss and the fact that he could keep nothing in his system

(digestion

> issues / lack of digestion), he was put through every test on god's

> green earth and nothing seemed to come up. He ate, didn't gain.

At

> times his appetite was poor but we worked on a system of high

caloric

> intake that had minimal effect - eventually we put him on a feeding

> tube - and he turned a corner. There is so much more detail to

share

> about this, but the worst for are the unbelievable

infections

> he is prone to. With his body weight so low, when he'd get sick he

> would fail pretty quickly and we would inevitably end up in ER, on

> IV, or worse the nasal gastric feeding tube beacuse dehydration was

> so bad that he would have collapsed veins. This pattern continued

> and even though when he'd get sick I'd try to be proactive and

> suggest early IV treatment - the docs would turn us away and it got

> out of hand. Now that he is a little older this pattern seems to

get

> further apart and the episodes are not as often, but every time he

> gets the sniffles, I feel my own panic set in. (I get better at

this

> each time too - hiding it anyway. Currently he is fighting an ear

> infection and we are slugging through sleepless nights. He is in a

> fairly good spot on the growth chart right now hovers happily

between

> the 2nd and 3rd percentile, a far cry from when he didn't even make

> the grade. Sorry, I could write all day! I'll call it quits for

> now - glad to meet you - looking forward to your stories, support

and

> encouragement.

> Gratefully - Charlene, mom to , 4 years old & cute as a bugs

> ear!

>

[Guest guest]

Charlene,

BS is blood sugar. GH is growth hormone. I don't remember what DHEA

is. I have not used that term in a long time.

Jodi Z