Thanks to everyone from new girl on the block

[Guest guest]

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!