Re: I'm confused - nothing new about that!

[Guest guest]

Hi ,

I am sorry to hear the the endo was such a jerk. I don't know if

you saw my recent post about . At age 5, he is now 39.7 inches

and 37.2 pounds. He gained 5.5 pounds in the last 3 months (of

course, he didn't gain any weight the 3 months before that).

It is hard to compare various GH because of how they are mixed. For

example, when started GH he was getting .35. However, we use

straight nutropin and we were mixing the powder with 5 ml of water.

now gets .48 but we mix the powder with 4 ml of water, so

the .48 is much more concentrated.

How long has Connor been on the GH? is growing at a rate of 4

inches per year and has been pratically since we started GH. The

first time he fell below this rate, Dr H upped his GH right away.

You want Connor growing at well above the " normal " rate for his age

so that he starts to experience catch up growth.

For example, is now a bit over 2 inches shorter than Becca.

He used to be about 5 inches shorter than Becca (if not more), so he

is closing the gap which is what you want.

As for formula, also gets just over 500 ml per night of

formula and up until now was getting another 200 ml per day. He has

been getting this amount of formula for a very long time.

As for the appetite stimulant, he is just plain WRONG!!! I could

turn off 's pump tomorrow, and while he might eat a little bit

more, he certainly wouldn't make up 500 calories. We would be back

where we started with no weight gains. We even took off the

periactin when he started risperdal (for pdd) since it also acts as

a appetite stimulant. Well, no weight gain for 3 months. Back on

periactin, 5.5 pound gain in 3 months.

Good luck,

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

,

Nutrition and growth aren't connected huh?? Perhaps he has a different

explanation as to why my daughter who was nearly 2 when her tube was placed

(I just posted a new pic of her 2 mo. Before the surgery) and weighed 15lbs

has DOUBLED her weight in less than 2 yrs!! She also went from the less

than 10% for height to above the 50% with NO GHT!! I'm sure he must have a

reasonable explanation that has nothing to do with nutrition.

She now gets 1000cal overnight and eats during the day. She simply doesn't

handle a bolus. Without periactin she would eat NOTHING!! Literally

NOTHING!! She does not need feeding therapy as she is not only capable of

eating MANY different foods but is willing to try new things. . . for one

bite, at which time she says " she's not hungry anymore, her stomachs not

bumpy either " :-).

I do think his weight is a little higher than Dr. H recommends but I'm not

positive. She likes their weight for height to be between the 15-25%

because of their increased risk for insulin resistance. Based on the BMI I

calculated I " think " he is a little higher or right at the maximum weight

(for her preference of course). I don't have an old weight/height chart on

me and I know it's really close, I'm just not sure. Pat will probably

compare him to for you as he is also on growth hormone.

Perhaps he has reached a point of weight catch up where you could ease up a

little on the nighttime feeds. BUT, I certainly wouldn't want to cut back

so much it affects his linear growth. After all to " catch up " he MUST grow

faster than his peers.

Good Luck!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of Kearns

Sent: Friday, August 19, 2005 10:10 PM

To: RSS-Support

Subject: I'm confused - nothing new about that!

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

[Guest guest]

- we need more info to accurately gauge the GH dosage. The .5

isn't the right dose. I am so sorry! I know parents are often

confused, and it is very hard to know what the dose is.

The dose isn't the box (e.g., a 5mg vial of Humatrope or 12mg vial

for a Humatropen). And it isn't the units you give them (e.g., 1

click or 24 units). Dosages are usually in .XXmg per kg per day

format. Some also go in 1.XXmg per kg per week.

Somehow you need to find out what DOSE he is on. For example,

is on .31mg per kg per day.

Let me know, OK? The highest dose, I believe, that is FDA approved

is .48 mg/kg/day or .46?? Something like that. Dr. H usually

starts off VERY low at .18 and goes up from there.

grew double (went from 2 inches a year to 4 inches a year)

on as low as .2mg/kg/day....

Jenn

> 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

[Guest guest]

Pardon my crassness, but your Dr. Rogol sounds like a real dick with ears. get

a new endo doc. right away. don't waste another minute of your time on this

guy.

Dayna Carney wrote:,

Nutrition and growth aren't connected huh?? Perhaps he has a different

explanation as to why my daughter who was nearly 2 when her tube was placed

(I just posted a new pic of her 2 mo. Before the surgery) and weighed 15lbs

has DOUBLED her weight in less than 2 yrs!! She also went from the less

than 10% for height to above the 50% with NO GHT!! I'm sure he must have a

reasonable explanation that has nothing to do with nutrition.

She now gets 1000cal overnight and eats during the day. She simply doesn't

handle a bolus. Without periactin she would eat NOTHING!! Literally

NOTHING!! She does not need feeding therapy as she is not only capable of

eating MANY different foods but is willing to try new things. . . for one

bite, at which time she says " she's not hungry anymore, her stomachs not

bumpy either " :-).

I do think his weight is a little higher than Dr. H recommends but I'm not

positive. She likes their weight for height to be between the 15-25%

because of their increased risk for insulin resistance. Based on the BMI I

calculated I " think " he is a little higher or right at the maximum weight

(for her preference of course). I don't have an old weight/height chart on

me and I know it's really close, I'm just not sure. Pat will probably

compare him to for you as he is also on growth hormone.

Perhaps he has reached a point of weight catch up where you could ease up a

little on the nighttime feeds. BUT, I certainly wouldn't want to cut back

so much it affects his linear growth. After all to " catch up " he MUST grow

faster than his peers.

Good Luck!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of Kearns

Sent: Friday, August 19, 2005 10:10 PM

To: RSS-Support

Subject: I'm confused - nothing new about that!

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