I've created this account to update friends and family on McRae's health. He has had a laundry list of symptoms for quite some time, but the two primary issues that are significantly impacting his health and quality of life are:
1.) His failure to grow. As I write this today, McRae is 7yrs 3mos, 38.2lb and 1st percentile. He has essentially stopped growing and is now loosing weight. Additionally, the meds the doctors have had him on were making him throw up which was increasing weight loss. 2.) McRae continues to have an impacted colon despite several different medicines and dietary changes. The last time he was hospitalized his colon was so dilated, we were informed it was very close to rupturing and as a result of being so dilated has done damage to his colon.
At this point, doctors agree the two things are related.
So far in two hospital stays, his team of doctors at Children's Seattle Hospital have ruled out a tethered cord, herschprungs disease, addisons disease. They are currently testing for crohns disease, cystic fibrosis and nutrient intake. We also have the Mayo Clinic currently reviewing his case as well as working closely with his pediatricians. The urgency with what is going on with McRae is that while the doctors continue to not be able to figure out what is causing all of this, he is getting smaller. Additionally, with the WA state mandate that elective procedures are not allowed, it is slowing down his ability to get the care he needs to diagnose what is wrong with him.