UHC FINALLY came through and approved the hormone replacement test for Cheyanne. Yea and boo. Yea because this means that she has the chance to grow, boo because it's another hospitalization and IV.
To bring you up to speed, Cheyanne is a 12 year old stuck in the body size of your average 8 year old. At the onset of her seizures she did not grow or gain weight for a good year. During bouts of increased seizure activity, again she did not grow or gain weight. Up until Christmas of 2009 she had grown 2 inches with no weight gain in the time that we had lived in Utah. We moved in April of 2007. Statistically normal growth is 3-4 inches per year for kids. In April of 2009, her pediatrician sent her to and endocrinologist to check and see if there were other things we were missing. The only things that showed up with all those test were a delayed bone age by 1 year. Not a huge deal. And low hormone levels. Again not a big deal we just needed to watch it closely. In November of 2009 her pediatrician started her on an allergy medicine also used to increase appetite to see if we could get her to gain weight. She weighed 50lbs. She now weighs 66 lbs and is growing a bubble butt! YEA!! She is now off that medicine!
In December 2009 we discovered her breast tissue enlarging and we redid her hormone blood work in January of 2010. It was discovered her hormones were so low they barley registered. Since then we have been fighting to get this test done. July 22 it was determined a "health care service eligible for coverage." 7 months? REALLY?? UHC needs some faster readers!
I've been doing some research and here is what I've found....
Growth Hormone Deficiency (GHD) is a medical condition in which the body does not produce enough growth hormone (GH). Growth hormone, also called somatotropin, is a polypeptide hormone which stimulates growth and cell reproduction. Growth hormone deficiency has different effects at different ages. Deficiency in adults is rare, but may feature diminished lean body mass, poor bone density, and a number of physical and psychological symptoms. Psychological symptoms include poor memory, social withdrawal, and depression, while physical symptoms may include loss of strength, stamina, and musculature. Other hormonal or glandular disorders frequently coincide with diminished growth hormone production.
GH deficiency can be congenital or acquired in childhood or adult life. It can be partial or complete. It is usually permanent, but sometimes transient. It may be an isolated deficiency or occur in association with deficiencies of other pituitary hormones.Although GH can be readily measured in a blood sample, testing for GH deficiency is constrained by the fact that levels are nearly undetectable for most of the day. This makes simple measurement of GH in a single blood sample useless for detecting deficiency. Physicians therefore use a combination of indirect and direct criteria in assessing GHD, including: Auxologic criteria (defined by body measurements), Indirect hormonal criteria (IGF levels from a single blood sample),
Direct hormonal criteria (measurement of GH in multiple blood samples to determine secretory patterns or responses to provocative testing), in particular: Subnormal frequency and amplitude of GH secretory peaks when sampled over several hours, Subnormal GH secretion in response to at least two provocative stimuli, Increased IGF1 levels after a few days of GH treatment, Response to GH treatment, Corroborative evidence of pituitary dysfunction. Severe GH deficiency in childhood additionally has the following measurable characteristics: Proportional stature well below that expected for family heights, although this characteristic may not be present in the case of familial-linked GH deficiency, Below-normal velocity of growth, Delayed physical maturation, Delayed bone age, Low levels of IGF1, IGF2, IGF binding protein 3, Increased growth velocity after a few months of GH treatment
The doctors still feel that most of her delay is due to her body shutting down some less needed functions to compensate for the overworking parts handleing the seizures. Although this could be another life long condition for her, the doctors are planning for more of a 'needed boost' during her teen maturing years.... unless of course the seizures stop.
GH deficiency can be treated by growth hormone replacement. "Provocative tests" involve giving a dose of an agent that will normally provoke a pituitary to release a burst of growth hormone. An intravenous line is established, the agent is given, and small amounts of blood are drawn at 15 minute intervals over the next hour to determine if a rise of GH was provoked. An insulin tolerance test has been shown to be reproducible, age-independent, and able to distinguish between GHD and normal adults, and so is the test of choice. GH deficiency is treated by replacing GH with daily injections under the skin or into muscle. Until 1985, growth hormone for treatment was obtained by extraction from human pituitary glands collected at autopsy. Since 1985, recombinant human growth hormone (rhGH) is a recombinant form of human GH produced by genetically engineered bacteria, manufactured by recombinant DNA technology. In both children and adults, costs of treatment in terms of money, effort, and the impact on day-to-day life, are substantial.
Children requiring treatment usually receive daily injections of growth hormone. Most pediatric endocrinologists monitor growth and adjust dose every 3–6 months and many of these visits involve blood tests and x-rays. (GREAT! more blood tests!At least they can all be done at the same time!) Treatment is usually extended as long as the child is growing, and lifelong continuation may be recommended for those most severely deficient. Nearly painless ( Really? Nearly?? children think everything is painful ... and mom fainting to the floor having to inject her? Whats that? Nearly painless my foot!) insulin syringes, pen injectors, or a needle-free delivery system reduce the discomfort. Injection sites include the biceps, thigh, buttocks, and stomach. Injection sites should be rotated daily to avoid lipoatrophy. Treatment is expensive, costing as much as $US 10,000 to 40,000 a year in the USA. (Oh that just makes my pocket book shrivel up and die. So much for vacations til the year 2150 cause you know someone is going to develop something to make us all live longer. Probably before a seizure or cancer cure! lovely.)
Now we are playing the waiting game of getting scheduled for this. They schedule a 4 hour hospital admittance so they have the opportunity to try all hormone drugs in case she doesn't respond to the first. The only down side to this is that some are available in capsule, and others require a daily shot. Can you just see me trying to give her a shot? I have to imagine a happy place just to help her through getting her 6 month blood work done. Daily shot?? Really?? gag... But what do you do when it's what your child needs for a better life? ... happy place happy place happy place....
No comments:
Post a Comment