Notes from Growth Hormone Stim test - GH Therapy Suggested :(

Below are my notes from the initial conversation with the Endocrinologist in regards to the GH Stim Test. Turns out he is deficient in GH and they are suggesting to begin the shots. Which will go until he hits puberty. Not super excited about this but doing a lot more research to figure out if this is really the way to go with such a complex little guy. Have talked to a couple of his docs but will talk to more before the end of next week. They are also talking amongst themselves to understand how it might negatively affect him. I do know if we begin them and the hypoglycemia is under control that will be a major relief. Every morning I wake him up not knowing if he's just sleepy and slow to wake or having an hypo episode. Nerve-wracking to say the least.

I'm just too tired to finesse the notes so I'll leave them as I heard them...

pituitary function is ok

adrenal stimulation profile, stimulated adrenal function is actually very good, no issues

thyroid function is improved from before, last time was borderline, was on lower range of normal now on the middle

does not look like full pituitary issue

isolated growth hormone deficiency, best news we have from the test, accounts for why growth factors in blood were low, why he hasn't been growing the best, severe gh deficiency can cause low blood sugars

gh will help him bring his blood sugars up

95% of parents use a pen device, has a cap to it, a tiny 4ml needle tip at the end, kid friendly looking pen, a tiny needle tip at the end, dial up the dose, all we are doing is changing the needle tip, put the pen on the child on buttocks, thigh or belly, very superficial, just feels like a paper clip tip, hold it down for a few seconds and give the medicine

the company will send a rep out to our house to teach us how to use, 1 to 1 teaching

growth hormone stim test is not an actual quantifiable showing how much he makes

the test is really to show us if he's able to get up to a peak number to see if it's adequate, might be some numbers in the low range and some high, might be 15-20

3-4 range, his highest number was 8.6, lowest was 2.9, average for a child his age, adequate needs at least 1 number above 10, 

normal would be 10-50 on average, an artificial test

side effects of growth hormone are headaches, joint pain, muscle pain, any increased growth of moles on the body

growth hormone has been used since the 80's, people who were initially started as children are just entering into adulthood, not long enough to study long term side effects

use a recombenant synthetic growth hormone, made in the lab

give injection every day, have to monitor him every 4 months through a blood test, change the medication depending how he is responding to the, 

they will monitor IGF1, it can get to a relatively stable state, now it's very low standardized, normal is -2 to +2 standard deviation

on a bell curve 99% of values will fall in the bell curve

number is relative to the age so based on standard deviation, he plotted at -2.4, to them it's very low, that's why they were very suspscious

every 4 months they will see how the standard deviation changes, getting closer to 0 when they consider 

typically the issue is if you have a brain tumor in remission there could be potential reactivation theoretical risk

have cancer patients that they have on gh and they just monitor them carefully

can help with muscle mass and bones

will need to talk to all specialists, primarily dr. danielpour and the genetics group, cardiologist and pulmonologist

failed growth hormone stim test, low blood sugar, endo 

if we choose not to go ahead with the growth hormone is the low blood sugar, is a side effect of a

hypoglycemia could cause seizures is the largest concern, if you don't have enough of it you won't be on the growth chart, 

can help with strong bones, muscle mass, heart, lungs and liver need adequate growth hormone for normal functioning

if severe headaches they stop for a week, then start again very slowly, 

low blood sugars combined with deficiency of growth hormone is a combination that needs to be addressed.

when they measured him in their clinic in August they have him at 95.5cm 3' 1.6" 20th percentile