I'm confused - nothing new about that!

[Guest guest]

Howdy Folks,

Well we are back from our travels in Oregon. I'm so behind on email

and life in general that I hope not to have a nervous twitch by the

time school starts for the boys.

O.K. we had a Pediatric Endo. visit today in Charlottesville with

Dr. Rogol. In a nutshell, he's not a fan of Dr. H., does not

believe in the connection between nutrition and growth and is

basically a rude short man.

Nuff about me.

His comments today I'm throwing out to you all to see if they make

sense.

Perhaps I should title this email, " Is there such thing as to good

of a thing? "

Since Connor began ght, he has grown 2 inches and gained six

pounds. His stats today were height at 34 inches and weight at 26.5

lbs. According to Dr. Rogol this is to good of a response. He said

that the rate at which Conor was growing was not normally projected

for the dose that he's on.

Connor is on .5 of Nutropin A.Q every night. He get's two can's of

Kindercal at night time in the g-tube but eats orally during the

day. Do these doses seem to large to you all? If that's the case

then I need to gather some facts to present to both docs in charge

of these two area's of care for Connor.

Dr. Rogol had the blood drawn and is testing it for the IGF levels.

He refuses to call Connor's diagnosis, RSS. He refer's to Connor as

SGA (which I don't mind) or Idiopathic Short Stature (which I do

mind). He says that I'm over feeding him at night time and that I

wouldn't need an appetite stimulant if I would pull back on the

night time feedings. I agree with him to some point. However, the

pump ends at about 4:30 in the a.m. Sometimes Connor eats a little

breakfast. Sometimes he doesn't. I don't stress over it anymore

because I know we've got back up and catch up during the evening.

My gut is telling me that I am dealing with a doc who is a pediatric

endo but who really isn't very savvy about RSS. Hence, why would he

ignore the gut issues and not know about the lack of appetite that

our kids have? Also, I feel rather slam dunked. Initially he

wanted Connor to start the ght before his two year old growth spurt

was over. I disagreed and asked him to wait. We went back, and

Connor hadn't gained any weight in three months. Than he tells me

he won't start the drug until Connor starts gaining. So, we bounce

back to the Pediatric G.I. who say's, " You've tried everything

orally with this kid. I think he's at a stage where the g-tube will

benefit him on the days his eating is poor. That way, you'll know

he's getting enough for life and energy for the ght.

Six months later, I'm been reprimanded for following through on

their recommendations. Honestly, the child is not chubby. He's

healthy. Isn't that what we are supposed to be doing here?

Uhg. I need a rolaid. I need a long walk. I really wished I could

have come to convention this year and have Dr. H. look him over.

Nuff said.

Mom to Graham 8; Cameron 5; Connor 2, RSS, Nutropin AQ, g-tube