For those on growth hormone

[Guest guest]

Hi! I had some questions emailed me privately regarding growth

hormone dosing. So I've decided that I better write this email. It

is very important that every parent know and understand what dose of

growth hormone their child is on.

Below is a sample of the Microsoft Word document I created to help

me track my own daughter's history on GH. You can create something

similar in Excel, or handwritten with pencil and paper. It is at

the bottom of this email.

Every quarter, you need to record your child's new weight and length

and head circumference, knowing how much he grew in the past 3

months. You need to remember and record were there any medicine

changes in that time? Any illnesses? Did you skip a bunch of

doses? Ask the doctor AND WRITE DOWN: what was my child's growth

velocity for the last 3 months. This is the most important number.

The growth velocity (known as GV) tells the doctor how fast the

child is growing as an average over a year. This number is what

physicians compare each quarter. NOw, I will give you an example

but this is NOT the right number. But let's say " normal " for a 5-

year-old is 2 inches a year, which is 5.08cm a year. So growth

velocity is 5.08cm/yr. Your child was growing at 1.5 inches a year

before GH, or 3.81cm/year. So in order to get " catch-up " growth,

your child has to grow FASTER/MORE than before, and MORE than

the " normal " child grows. Does this make sense???

When the GV falls off, and goes below 5-7cm/year, then the physician

will look at any contributing factors (maybe the child's weight

jumped up so the dose was off) or the child was really sick. And

then the physician may decide to increase the dosage.

Now, on to the dose. There are TWO parts to growth hormone. There

is dose and dose. HA!!!!

VOLUME is one thing. That is the " units " or " ccs " you are giving

the child. But that is just " volume " and doesn't decide dosage.

For example, your child could be on a dose of .31mg/kg/day, which is

a weight based dose. So let's say the child is 59 pounds and gets

34 units. Now at the checkup, the child weighs in at 61 pounds, so

the doctor realizes that the dose per kg has fallen to .30mg/kg/day

don't know if these numbers are right, so just pretend). So in

order to keep the child's dose the same, he moves the child to 35

units, but keeping the dose at .31mg/kg/day.

We all are on different brands of GH, and different types within the

same brand. You could have a 5mg vial of Humatrope that you mix

with 4ml of dilutant. Or a 12mg cartridge of Humatrope that gets

premixed. It's great that you write that down, but you HAVE TO ASK

THE DOCTOR WHAT THE ACTUAL DOSE IS in terms of mg per kg per day.

(Some doctors do it in terms of mg per kg per week -- same thing but

larger number.)

Is my explanation making sense here??? It is very important that we

all keep track of what dose our kids are on. The FDA has approved a

pretty large recommended dose of GH for RSS/SGA kids (I think it

is .46mg/kg/day) but Dr. H strongly believes that since the kids

have to be on GH for years, and small dose adjustments be made over

this time, that it is better to start at the smallest dose possible,

see if the child grows well, and move up from there. She starts at

the very small dose of .18mg/kg/day.

My own daughter started at .18mg/kg/day and after almost 5 years, is

only up to .34mg/kg/day. Still far below the .46 or whatever the

recommended amount is, maybe .48??? Either way, you can see that

has had to move up .16mg over the 5 years. We could do that

because she started off so low.

has had a 3-month-period where she grew almost NOTHING (was

very sick and low dose) to 11cm/year (where instead of growing a

normal 1/2 inch in the 3 months, she doubled and grew an entire

inch).

OK. Finally. Here is a sample of what I write in this document to

track 's GH dosing. It may not copy right due to the

margins. But I simply add a new " quarter " each new visit.

17th Qtr – 4yrs 3 mos: Jan. 7, 2005 (Dr. Harbison)

Height: 136.4 cm (53.7 " ) Head Circum. 53.2cm

Weight: 26.0kg (57.2 lbs)

New GH Dosage Prescribed: Humatrope 12mg cartridge give 32

units (.325mg/kg) or (1.2mg/day)

GH Dosage prior 3 months: Humatrope 12mg cartridge give 30

units (0.325mg/kg); stay at same dosage other meds

Growth Velocity prior 3 months: 9.24

Other Meds prior 3 months: Periactin 8.4 twice a day, Prevacid

15mg capsule in morning; Zantac 6cc at night, ½

capful of Miralax every other morning. NO ILLNESSES.

Hope this helps. Email me privately if you need further explanation.

Salem