toryns test results came back last week.. he does not carry either of the genetic mutations that are seen in about 30% of people with RSS but the endo and the genetics doctors have diagnosed him based on thier data that they have collected and talked about. huntz and i are currently seriously discussing the use of growth hormones since his BMI has taken another massive nose dive. he did gain 2lbs and 2 inches but he went from a BMI of 13.7 to 13.3 in two months. we are trying the growth hormones in hope that his BMI will increase instead of keeping falling. a BMI under 13 is considered dangerous and we do need to start doing something to help make sure he continues to be healthy. we are hoping that we dont have to use the last resort method and put him on a feeding tube so that he is getting the extra calories that he needs.
the genetics doctor has ordered futher testing done on his DNA to make sure that there isnt anything else hinding in his genes and is working on an order full a total bone scan of his body. we will also be making an appointment with the endo to make further choices in his medical care.
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