The 2nd round of blood & urine results are in. The independent (non-PCH) (terrible bedside manner) endocrinologist said he has no idea what is going on and recommended we schedule an appointment with a nephrology doctor. Not the answer we wanted to hear. So we are no longer seeing him. Goodbye!
Dr. McClellan (endocrinologist at PCH) is still confused. He said it could be an x-linked genetics (life long) related rickets or an unknown nutritional issue that is causing the rickets. We like Dr. McClellan’s friendly personality and appreciate his honesty. But you don’t normally want to hear from your specialist that they have no idea what is the final root cause of rickets. On the bright side, he put together a treatment plan. So we are sticking with him!
On last Tuesday, Lucas started on a phosphorous supplement called k-phos. He takes the compound liquid prescription 3 times a day. The game plan is to retest his blood & urine once a month. Plus, we will have another round of x-rays after 3 months on the medicine. If we don’t see any sign of improvement after 3 months, then we will be referred to an out of state bone specialist.
We are so lucky! Last night, we had a phone consult with Dr. Tebben who is an endocrinologist at Mayo Clinic in Minnesota. The doctor is confident Lucas has nutritional rickets that is being caused by the c.diff infection. Not a genetics form of rickets. That would be wonderful! Basically we need to beat c. diff and give Lucas the daily phosphorus medicine to eventually get rid of rickets. Feeling hopeful!..Yesterday, Lucas had 6 diarrhea diapers and one even tested positive for blood. So the pesky c. diff is back. Last night, we restarted the c. diff medicine. Go away c. diff!!! You are stealing all of Lucas’ vitamins & nutrients.