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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Most health care professional don't know this, so she get a point.she basically said but the mitochondria need to produce more ATP which I knew already
Hi Guys, Andrew is finally home as of right before Thanksgiving. Due to his condition of Prader Willi, he does not eat well and we are on the low end of the growth curve. Feeds are every three hours and sometimes take up to an hour. He is a very sweet boy and never cries, partially die to the hypotonia. Lots of unknwons at this point-intelligence, when will hyperphagia kick in, when can we get HGH. Lots of fighting with insurance companies to get aid and the right appointments. We immediately got rejected by Medicaid-because he hasnt been affected by Prader Willi! For Real!!! Today was a bad day. He didnt eat well and we were forced to take the fiver of vaccinne! Werent prepared for it and the pediatrician doesn't know much. Went to the ER for possible RSV, basically stuffed nose.He did cry when he was suctioned. That and no 02 monitor at peds office. I feel like I am living in an alternate world! Explaining shit to doctors all over again!!!!Hard not to project what life will be in the future.. Feel like I got kicked in the ......