Thursday, October 11, 2012

Progress and Anti-progress

For some background about Meghan's growth disorder, you can read my prior blog post here.

I'm trying to be thorough in writing about Meghan's treatment because I noticed that I now have a lot of people following this blog that have children going through the same or similar treatment.

Hurry up and wait
After waiting for three weeks to hear from our insurance company regarding Meghan's medication, our endocrinologist called us to let us know that she usually hears from insurance companys sooner than three weeks.    Dr. Sunni felt that the lack of response was a good sign as insurance companies do not waste any time sending rejection letters.  After living in Florida, I have learned that if you want something done, you have to  be persistent, so I called our insurance company, Medica, to check on the status of our request.  Medica did not have a record of our doctor's request.  Apparently Dr. Sunni's fax never went through.  Sooooo...Dr. Sunni re-faxed everything and within 24 hours we were inundated with calls from specialty pharmacies, the insurance company, and the drug company.  Within 48 hours, Meghan was approved for growth hormone therapy by our insurance company. 

Insurance approval was not exactly the end of the road for Meghan's treatment.  Meghan is IGF-1 deficient.  IGF-1 deficiency can be treated in several ways.  She could receive growth hormone injections, which in theory would stimulate her body to make IGF-1.   Alternatively, she could receive IGF-1 injections, which would directly supply her body with IGF-1.  Growth hormone injections are preferred because they have fewer side effects, only need to be given once a day, and have a longer history of use.

IGF-1 Generation Test
Meghan had to undergo an IGF-1 generation test to determine whether growth hormone would adequately stimulate her IGF-1.  A nurse came to our house and taught Ken and I how to give Meghan injections.  Meghan had her IGF-1 level drawn on the day prior to her first injection.  On that day her IGF-1 level was 40, which is quite low.  Then, we injected 1 mg of growth hormone every day for seven days.  The normal dose for a child Meghan's size is 0.35 mg, so she received almost three times the regular dose in order to hyper-stimulate her IGF-1 production.  After the 7th day, Meghan had her IGF-1 level drawn again.  Dr. Sunni told us that her IGF-1 would need to increase by 150 in order to say that the growth hormone worked.  We just received the result from Meghan's second IGF-1 test, which was 113.  We were hoping to see a number greater than 190. 

Meghan's reaction
Meghan has always handled medical interventions quite well.  She holds very still while having her blood drawn and during doctor examinations.  We did not expect her to react any differently to the injections.  Because I worked as a phlebotomist for five years, I spent plenty of time observing children and their parents.  I noticed that children directly mimic their parents' emotions.  Ken and I have made a habit of addressing medical interventions as matter-of-fact events.  I tell Meghan when something might hurt, but I also quantify the pain as being a "big ouchie" or a "little ouchie".  Afterwards, I always let her give her opinion of the pain, too. 

We have a bit of a routine we follow for blood draws.  First, Meghan has to walk on her own into the exam room.  She can hold my hand as she walks, but she is not allowed to cling to my neck or be carried.  Second, I always have her lay down to have her blood drawn.  In my experience, this stabilizes her entire arm and limits any flailing or sudden movement of limbs.  I do not believe in restraining children with force because it instantly makes them combative.  Third, Meghan has a special toy that she brings to the doctor for blood draws.  I keep her "My Little Pony" in my purse, and we only bring it out when she is ready to have her blood drawn. The pony is about 2-3 inches tall and small enough that 1) it fits into one of Meghan's hands, 2) it fits into my purse, and 3) it cannot be used as a weapon ;-)  We usually talk about the blood draw rather than use distraction because Meghan seems to prefer it.  After the blood draw, the pony is given a kiss then put away, and Meghan is encouraged to thank the tech.

We have treated the injections in a similar way.  We gave them at the same time every day, right after breakfast.  She now has a special little "Carebear" that her grandmother gave her that she can hold that only is taken out for her injections. (Do not ask me why Meghan gravitates towards 80's cartoon characters.)  We talk about what we have to do with each step, and encourage her to help with what she can.  The only thing Meghan insists is that we promptly cover the needle (which is quite small, 5mm) when we are done.  I think that is her way of ensuring that we are really done.  She did get a few bruises from the injections.  Unfortunately, she is so skinny that we can only give them to her on her legs at this time.

A few steps back
At this time, we have stopped giving Meghan growth hormone injections because they probably are not going to help anyway. Our doctor is out of the country until next week, so we are waiting for her to return and help us with the next step in the process.  We will have to go through the insurance approval process again for the IGF-1 (Increlex) injections.  Increlex injections are given twice a day and carry the risk of low blood sugar.  Once she starts the injections, we will have to start checking Meghan's blood sugar a few times a day.

The prospect of giving Meghan Increlex does not excite us, given the added side effects and additional daily injection.  However, we keep reminding ourselves that the care she requires is minimal compared to children with diabetes, and we are so lucky that she was diagnosed at a relatively young age and still has plenty of time to catch up in her growth before her growth plates fuse.

Now that the fog is slowly lifting from our house, I hope to write some more fun, exciting blog posts in the near future!

1 comment:

  1. Meghan is so fortunate to have parents who are so educated and trained in science and medicine! And so are all the people who are learning through your blog, Missy. Thanks for sharing!