Re: Something doesn't feel right

[Guest guest]

Did Conor move or wiggle when he got the shot? The few times my

daughter bled (in about 200 or so shots he has gotten so far) was

when she moved or wiggled her legs just as we were putting the pen in.

She started at .3 when she weight 14.5 lbs. Then was increased to .4

in 3 months (last nov) when she weighed 16 lbs. But late feb when we

went back her endo was so happy with her growth he kept the dose

same, altough the weight was then 18.5 lbs. The recommended dose for

SGA kids is 0.48 per kg of body weight per week I think. So my

daughter is getting less than the max allowed, but I think it all

depends on how the growth is going. But when we started the endo did

say he wanted to start on a low dose and then bump up as needed.

ps funny story. We count 1001, 1002 when she gets the shots. As soon

as we take the needle off after the shot, we give the pen back to her

and she puts it on her thigh and starts counting 1001, 1002. Seems

she is almost ready to give herself her own shots.

Sabina mother of Naomi 8 months on GH now 19.5 lbs 27.5 inches

>

> Hey Folks,

>

> Just a quick SOS regarding growth hormone.

>

> The Pediatric Endo we have is Dr. Alan Rogol of University of

> Virginia. He's also a member of the Magic Board. His specialty is

> Kline-Felter's Syndrome (XXY Chromosome in a human).

>

> Anyway, the starting dose he gave us is 0.5. I don't know why but

> that seems high to me.

>

> Connor's stats are 31 inches in height and 21 lbs. The drug rep

> commented on the fact that it was a small does, but if I compare it

> to the dose of kids here on the listserve, it seems almost like

> double the amount.

>

> AM I in a panic for nothing. I hope so.

>

> We are using the Nutropin AQ with the pen applicator. Can't say

> that I like it very much only becaue I really don't want to give

> Connor his shot. However, daddy did it last night and Connor bled

> and bruised. What's he doing wrong? We both got the training and

> the drup rep was wonderful. To heavy of a hand with the pen maybe?

>

> Please write back soon. Shot time comes up in a few hours and I

> don't want to repeat last nights experience.

>

> Overall, Connor's doing fine. I'm learning though that if he has a

> bedtime snack, don't give his the regular feed amount in the g-

> tube. When we traveled back from Busch Gardens over the Eatster

> Holiday, Connor munched all the way home. I hooked him up at 10:00

> p.m. with the same dose and rate (500mls/45 ). The next morning,

> you could smell the vomit outside in the hallway. The little guy

> was just to full to take his feed and poorly digest his cheese

stick

> to boot. Remember the Pancreatic Insufficency... I sure didn't.

>

> Sigh, when will I ever learn? When will it ever end?

>

>

>

> P.S. Have I told you all how much I hate giving Connor his shot?

> Have I told you all that I will be the only one giving it to him

> soon as his daddy travels all the time.

>

> Ugh!

[Guest guest]

Hi ,

It may seem high but it sounds about right when I compare it to what

my son gets.

If you have any doubts, you can ask the doctor to recalculate the

dosage. It is based on height and weight. If you can't get in touch

with the doctor, you can always give less until you are sure about

the dosage.

I haven't had to deal with a feeding tube, but there have been

occasions that we over fed . Now that he is older, he can

regulate himself. On the other hand, it is now harder to get him to

eat what we think is the proper amount. However, he is doing well, so

we just have to accept it and do what we can.

I hope this helps.

Ken M

>

> Hey Folks,

>

> Just a quick SOS regarding growth hormone.

>

> The Pediatric Endo we have is Dr. Alan Rogol of University of

> Virginia. He's also a member of the Magic Board. His specialty is

> Kline-Felter's Syndrome (XXY Chromosome in a human).

>

> Anyway, the starting dose he gave us is 0.5. I don't know why but

> that seems high to me.

>

> Connor's stats are 31 inches in height and 21 lbs. The drug rep

> commented on the fact that it was a small does, but if I compare it

> to the dose of kids here on the listserve, it seems almost like

> double the amount.

>

> AM I in a panic for nothing. I hope so.

>

> We are using the Nutropin AQ with the pen applicator. Can't say

> that I like it very much only becaue I really don't want to give

> Connor his shot. However, daddy did it last night and Connor bled

> and bruised. What's he doing wrong? We both got the training and

> the drup rep was wonderful. To heavy of a hand with the pen maybe?

>

> Please write back soon. Shot time comes up in a few hours and I

> don't want to repeat last nights experience.

>

> Overall, Connor's doing fine. I'm learning though that if he has a

> bedtime snack, don't give his the regular feed amount in the g-

> tube. When we traveled back from Busch Gardens over the Eatster

> Holiday, Connor munched all the way home. I hooked him up at 10:00

> p.m. with the same dose and rate (500mls/45 ). The next morning,

> you could smell the vomit outside in the hallway. The little guy

> was just to full to take his feed and poorly digest his cheese

stick

> to boot. Remember the Pancreatic Insufficency... I sure didn't.

>

> Sigh, when will I ever learn? When will it ever end?

>

>

>

> P.S. Have I told you all how much I hate giving Connor his shot?

> Have I told you all that I will be the only one giving it to him

> soon as his daddy travels all the time.

>

> Ugh!

[Guest guest]

,

Don't worry about the bruising and bleeding. Max has had his share,

believe me. Sometimes you hit a blood vessel without realizing it

and it just happens. Also, with the pen, the person giving the shot

subconsciously thinks it has to be injected with more force than

necessary because of the size of the pen. It's just one of those

things.

I have to admit that I am not a fan of the pens. They are

convenient because it is easier to mix the meds, but it is harder to

control the force of the injections. Because Max is older and gets

a larger dose now, we mix the meds using the cartridge, but then

withdraw the amount of the shot into a regular insulin syringe.

(Max really does all of this now.) Then Max uses an Injectease to

give himself his shots.

Perhaps you can explain to the endo about your discomfort with the

pen. Ask him/her if you can switch to doing what we do. It's kind

of like the best of both worlds. And Connor can get his shots

without seeing the needle, which makes a huge difference in how he

perceives and reacts to the injections.

Jodi Z

[Guest guest]

It may not be a large dose. .5 what?

The box often says 5mg. But you have to ask your doctor or the

nurse what is the " dosage by mg per kg per day " or " dosage by mg per

kg per week. " If he has prescribed .5mg/kg/day, then yes that

seems high. But I thought that the FDA recommended dose

was .46mg/kg/day so starting at .5 if it is mg/kg/day is high. My

daughter is 9 years old, about 60 pounds now, and has been

on GH for 4 1/2 years. She is still only at .31 mg/kg/day.

Keep us posted. Jenn

>

> Hey Folks,

>

> Just a quick SOS regarding growth hormone.

>

> The Pediatric Endo we have is Dr. Alan Rogol of University of

> Virginia. He's also a member of the Magic Board. His specialty

is

> Kline-Felter's Syndrome (XXY Chromosome in a human).

>

> Anyway, the starting dose he gave us is 0.5. I don't know why but

> that seems high to me.

>

> Connor's stats are 31 inches in height and 21 lbs. The drug rep

> commented on the fact that it was a small does, but if I compare

it

> to the dose of kids here on the listserve, it seems almost like

> double the amount.

>

> AM I in a panic for nothing. I hope so.

>

> We are using the Nutropin AQ with the pen applicator. Can't say

> that I like it very much only becaue I really don't want to give

> Connor his shot. However, daddy did it last night and Connor bled

> and bruised. What's he doing wrong? We both got the training and

> the drup rep was wonderful. To heavy of a hand with the pen maybe?

>

> Please write back soon. Shot time comes up in a few hours and I

> don't want to repeat last nights experience.

>

> Overall, Connor's doing fine. I'm learning though that if he has

a

> bedtime snack, don't give his the regular feed amount in the g-

> tube. When we traveled back from Busch Gardens over the Eatster

> Holiday, Connor munched all the way home. I hooked him up at

10:00

> p.m. with the same dose and rate (500mls/45 ). The next morning,

> you could smell the vomit outside in the hallway. The little guy

> was just to full to take his feed and poorly digest his cheese

stick

> to boot. Remember the Pancreatic Insufficency... I sure didn't.

>

> Sigh, when will I ever learn? When will it ever end?

>

>

>

> P.S. Have I told you all how much I hate giving Connor his shot?

> Have I told you all that I will be the only one giving it to him

> soon as his daddy travels all the time.

>

> Ugh!