24 June 2004 - Sharing with Kurt what I have researched so far

Dear Kurt,

Express-Scripts does cover growth hormone with pre-authorization from the doctor... still looking for data on the pros and cons of growth hormone supplementation, I am having trouble finding out "what happens if you DON'T take it?" How short are we talking here??? And other than being short, what other health issues are at risk. My experience has been that there are risks to taking meds and to avoiding them, so trying to find out the risk factor set that is more palatable is key.

 

Also, I got her records (finally! Argh!) and the DTaP was the vaccination that discolored Virginia's leg. So that was good to know. (Not sure why, other than because knowing is better than not knowing.) I will find out the ingredients other than the vaccines themselves (dilutent, preservative, etc.) so that we can cross-reference the growth hormone shots, to make sure there are no common ingredients, since we don’t know exactly what aspect of the vaccination that she reacted to.

 

I am having no trouble finding people who DO the growth hormone supplements- lots of information there... but I too would like to hear a more balanced presentation of the risks. As far as I can tell, walking out the door of my house in the morning presents risks. Nothing that keeps me from leaving the house, but the presentation of a powerful drug as having "no side effects" makes me suspicious rather than reassured...

 

As far as what else I have learned… an MRI to check for tumor or malformed pituitary would be the next step if she doesn't pass the Growth Hormone Stimulation Test. Passing the GHST would mean just watching/monitoring her growth closely and seeing if she begins to grow better. Passing would be 10 or greater. Not passing would likely mean the MRI and then growth hormone injections. There doesn't seem to be any other treatment possibility besides injections or doing nothing, regardless of the results. Even though there could be different things found to be wrong, the treatment is basically the same- nothing or growth hormones. UGH! That is disappointing.

 

I am going to read a little more from other parents and otherwise not dwell on this for now. I don’t have to think about it until August when we do the stim test.

Love,

Delilah

 

6 July 2004 - Growth Hormone Stimulation Test scheduled

Dear Kurt,

Dr. Ham's office called and they have scheduled Virginia's test for next week! (Ack! That was quick!!!!!!!!!!!!!!!) So I have to arrange childcare for Isaac and Nane has to try and reschedule her colonoscopy so I can still pick her up from it (which I can't if I'm at the hospital with Virginia that day).

Virginia and I will be at Children's from approximately 8 a.m. until 2 p.m. next Thursday the 15th. I guess I will keep thinking about it now, after all.

Love,

Delilah

 

15 July 2004- letter to my mother-in-law about GHST

Dear Barbara,

We're done- whew! It was not enjoyable for either of us, but it went okay, all things considered, and it's over. She suffered no ill effects, and we are grateful it's done. Hopefully we'll get results before we leave next week on vacation! Thanks again for having Isaac- he had a ton of fun!!!

Love,

Delilah