This morning Odette went back to the orthopedic doctor for her follow-up. She originally went in May to have him look at her knock knees and feet. He wasn’t concerned given her age but took a hip x-ray to rule out cerebal palsy as the cause of her different looking feet. He couldn’t see a bone (can’t remember the name of it) and wasn’t sure if it was because of her excessive bowel gas (distended belly), bone loss, or birth defect. He wanted to see her again in 2 months for another x-ray. It was over a month before I worried about the possible “missing” bone.
Then Odette went to the dentist and her x-rays showed bone loss throughout her entire jaw. The international adoption doctor wanted us to be sure to let the orthopedic doctor know this at our appointment. I began to worry as specialists names were discussed and lab work was ordered. I went into today expecting to hear the worst.
Thankfully, Odette’s hip x-ray came back in the clear. While she still has bowel gas (ahhhh! I’m ready to kiss that bloated belly goodbye!) he was able to confirm that the bone was there. Praise God! Honestly, I wasn’t worried about a “missing bone”. To me a “missing bone” was something that is over and done with. I was worried that she was loosing bone mass. I brought up the dentist’s findings and the doctor was surprised. I was very hesitant to trust him at first. I really didn’t think he was taking me seriously. I pressed the issue and threw out all the terms that other doctors have brought up: rickets, calcium levels, vitamin D, malabsorption, hypophosphatasia, etc. He point-blank said she doesn’t have rickets and she doesn’t have hypophosphatasia. Immediate sigh of relief. He went on to say that he didn’t see ANY indication of bone loss. He actually said that Odette’s bones looked to be good quality! I thanked him for being the first doctor to tell me what it isn’t! Unfortunately, he couldn’t give me any indication of what it could be. He empathized with us not getting answers from the dentist and apologized that he couldn’t help us out more. Odette was just relieved that the doctor didn’t poke her with a needle!
What does this mean? Not really sure. We don’t need to return to the orthopedic doctor unless she is a preteen with knock knees and has discomfort. All right, one less business card to hang on the fridge! Then on Friday, after more than 3 weeks, I finally heard back from the dentist. At our last appointment she told me my daughter has significant bone loss and showed me pages in a medical journal with scary, scary possible causes. She admitted that she wasn’t familiar with bone loss as it isn’t something she sees often. She offered no guidance or suggestions other than saying she will confer with her colleagues, get back with me, and send the information to our pediatrician. I had no idea how big or small the issue was. The conferring apparently finally happened and now she wants a consultation, frequent (every 4-6 weeks) x-rays, and is referring her to specialists at a children’s hospital. What? Maybe it is just me, but seriously? If it was that significant shouldn’t all of this happened weeks ago? I was just convincing myself that the bone loss was probably just from malnutrition or something and that it was a thing of the past.
Needless to say I am confused. We got GREAT news from the orthopedic doctor today, but obviously the bone loss is evident in her jaw. Last week, the international adoption doctor ordered tests to look into possible causes. I’ve gotten no results… I am extremely thankful that we live in a country with access to medical care, but I am beyond frustrated with the lack of answers!
If I’m still blogging, I’ll keep you posted.