Tuesday, August 2, 2016

Labs and a Lack of Hunger

We got Ayden Jane's labs back. Most things are fine but a couple things stood out. First of all was her bilirubin was high and her ALP low. Dr. Miller has decided that since all the other liver enzymes are great, she is going to assume it is some form of error or anomaly for now. We will retest in a month.

Secondly, her IGF-1 level shows she definitely needs an increase in gh. It is her first increase in 3-4 years! She was doing great with levels spot on until the 'winter of infection'. Then her IGF1 level spun out of control. We even had to reduce from the 0.8 down to 0.6 for a while and slowly work back up.

We have felt that Ayden Jane was a little off for a while now and lack of gh makes sense for those things. She is a bit low on energy which is definitely commonly an effect of low gh. Napping a bit during the day and needing breaks when playing.

What is not common is that her hunger has pretty much disappeared. She has significantly cut down on breakfast and sometimes skips it all together. She has not needed snacks and even cut back on the meals she is eating. I have let it roll most of the time but she has dropped about 4 pounds in a month and it has not changed.

Now, you'd think I would be doing the happy dance because she is not hungry and losing weight. What more could a PWS momma ask for?? Well, the speed at which she is dropping makes me pretty certain she is losing muscle as well as fat. Not good.

Typically, doctors do not really want to raise gh if a kid is having trouble maintaining weight or is already losing weight. I mean, common sense says it would be hard on a body to power a growth spurt and lose weight at the same time.

Dr. Miller and I talked through it and I have convinced her that this is actually Ayden Jane typical. She used to get scrawny through the shoulders and have trouble maintaining weight when she was little and needed a gh bump. I just haven't seen it in forever!

She agreed to going up to 0.9 but I will be responsible for tracking her eating and weight to make sure she is eating and her weight maintains. So, if we can keep her weight at 83-84 pounds and she grows a bit along with rebuilding some lost muscle... Wow will we be in great shape. My guess is we may need to go up to 1.0 but we can decide that in month when we recheck labs. 

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