including countless blood draws, several urine tests, a brain ultrasound, a kidney ultrasound, an abdominal ultrasound, a groin ultrasound, three skull x-rays, two wrist x-rays, two knee x-rays, and leg, collar bone, shoulder blade, rib cage, pelvis and spinal column x-rays ordered by two pediatricians, two neurologists, two nephrologists, and three specialists of biochemical diseases, the results are in:
We don't know, but we don't think it's chronic.
They have watched negative changes develop in his skull and wrists. These changes in bone structure are such that they should not cause any problems for him in the future. They have watched several various values of things they were testing for spike and return to normal (or mostly to normal). They have watched him grow from the 5th percentile for height and weight and 97th for head up to a more normal 50th percentile for height, 75th for weight and 85th for head. He is now sleeping 10 - 11 hours a night, usually without waking. Almost all of the crazy blood test and urine test values have normalized, except that there is still something in his urine that indicates high bone turnover (that is usually found in people with osteoporosis) and there is still protein coming out in his urine, but both of these levels have been slowly lowering. They suspect they will return to normal within a couple months. He is no longer losing magnesium, alkaline phosphatase, or calcium from his bones and/or kidneys into his bloodstream or urine.
The doctor in biochemical diseases says that her only real theory is that it was a vitamin D deficiency all along. The nephrologists don't agree, as they feel that would not have had such long-lasting and far-reaching impacts. He started receiving vitamin D supplements at 1 year, yet his condition seemed to bottom out six months later, with negative changes in his wrists still developing well after his vitamin D levels were known to be in the healthy range (as proven through vitamin D testing). They never had proof of a vitamin D deficiency, she is just assuming that given that he wouldn't take the vitamin D drops as an infant and that some of his symptoms correspond with rickets. The first and only time we tested his vitamin D levels they were good. The pediatrician we were working with told us that rickets responds almost immediately to vitamin D supplementation, with positive changes seen on x-rays within days of starting treatment, but Ethan's condition only got worse even though we knew his vitamin D levels were good, which is why the pediatrician stopped pursuing vitamin D deficiency nearly a year ago. Ethan also never displayed any muscle weakness associated with rickets. Plus, we live in south-central BC, desert country- he gets lots of sun. However, the nephrologists did not have any theories other than "sometimes the human body does not act like we expect it to".
So it sounds like that's that. In six months they are going to test him again but they said that they fully expect everything to be at normal levels by then.
My husband is working from home and they are busy busy busy, running out of staff a few times a week. I'm finished school. Our son appears to be healthy. We are hoping that the worst year of our life is now behind us and we can move on. Fingers crossed
Anyways, thanks for listening and offering support over the past year (I cannot believe that this issue started last September!). Hopefully this is the last update