Parenting is Hard

Ok it's been a long time since I updated, so I will start with the most recent update.

On June 5 we took Campbell in for Growth Hormone testing. She had to have an IV. When it was first insterted they gave her one hormone test. Every 30 minutes for 2 hours they withdrew blood for testing. At the 2 hour mark they gave her another medicine. Again, every 30 minutes for 2 hours they withdrew more blood. The entire test took 4 hours. They were testing the blood for growth hormone levels.

We got the results on Monday. They were hoping to see her levels spike over a 10.0 just once. (Kids normally run at a rate of 20-30.) Her highest level was a 9.1. Out of 8 blood draws her highlest growth hormone level was 9.1. The conclusion is that she is growth hormone deficient. She does not produce enough growth hormone for her to achieve a full adult height. Without any intervention with the levels they way they are, she might reach 4'9". That is a tiny person.

Last night we met with the endocrinologist to discuss options. We wanted to know pros and cons of treating as well as pros and cons of not treating. The biggest and probably most important thing for us that we learned concerned her health as an adult. If we do not treat her now there is a 30% chance that as an adult (in her 40's to 50's) she could suffer heart problems, immunity problems, bone density problems, as well as others.

As parents, we feel it is our responsibility to help her become the healthiest adult she can be. Because we know that some of these health issues exist on both sides of our families, we want to do all we can to help her avoid some of these. For this reason we have decided to move forward with growth hormone treatment.

This is not something we go into lightly. This is a huge commitment. We will be injecting our child with growth hormones (a banned substance in sports) six days per week for the next 8 years of her life. Campbell, being the child she is, worked out the formula to figure out how many shots that is for her. It's over 2000 shots of growth hormone. We have to get special wavers for her to participate in sports in high school. (If they ever did a drug test on her, she will come up positive for performance enhancing drugs.) If she is ever to go into the military we have to prove tha this is a medical necessity. (It is. She's not even considered in the grey zone. She is most definitely deficient and meets every criteria for medical necessity.)

Monday evening Campbell shed a lot of tears. Aaron and I held back our fears so that we could comfort her and not let her know how frightened we were of this diagnosis. After our discussion with the doctor last night, we all feel much better and are ready to move forward.

She has 2 more tests to take, probably next week and then we begin treatment. The first test is another hormone test to make sure she is producing cortizol (sp?). The second one is the one that scares me. Not the test itself, but what they are looking for. She has to have an MRI to make sure that she does not have any tumors on her petuitary gland. Any speak of tumors anywhere in her brain freaks me out. The doctor said that she is not showing any symptoms (besides the deficiency) for either of these issues. They just have to perform these tests as part of protocol.

These treatments will begin in July or early August. The doctor expects her to grow 3 inches over the next year. Usually she grows only 1/2" in a year, so 3" is pretty significant for her. We will keep you updates as we move forward with this.