So Skyler had his endocrine appointment yesterday. It was hectic, I had a lot to do at work and I had someone come in to cover me from 10:30 until 1pm because I was under the impression that the appointment was at 11:15, Chuck was supposed to get me at 10:30. He slept in until I called him at 10:40, and then came to get me at 11:15 saying that the appointment was actually at 11:45. We didn't get in to see the doctor until 12:45. Didn't get out of there until 1:40 and I didn't get back to work until 2:40. Timewise it was all quite ridiculous. However the appointment itself went quite well.
Our endocrinologist has apparently vanished into thin air and no one told us until we got into the exam room yesterday. And by vanished I mean he went into research in something to do with lipids. Which is actually fine by me because he always seemed way too nervous when he was speaking with us. And from talking to this new endocrinologist who is only covering his position for a while I think I can see why he seemed so nervous. New endocrinologist (female this time) said Skyler has been on way too much prednisone. We had been following old endocrinologists instructions and giving him stress pred for every little cough, sneeze, funny look, etc. He instructed us to give him stress if he showed any signs of anything. New endocrinologist says that the dose we were told to give him is a triple dose, and should only be given if he`s really ill like projectile vomiting with the scarlet fever. She said we should only give him a double dose (not triple like the other endocrinologist said) for stress if he has a fever of 39c. Anything less than that he should be on normal dose. He has been on a triple stress dose for months now! Because he`s been teething and had a cold and every other little thing the old endocrine told us to look for. I`m sort of mad at the old endocrinologist now.. I feel like maybe he didn`t know exactly what to do with us because it`s so rare.
New endocrinologist said we weren`t going to check his growth hormone yet. She said that she wants us to do this reduced prednisone thing for four months because, guess what, too much steroids will cause him to stop growing. She thinks he`s had too much prednisone and if we reduce it he should start growing again. If he doesn`t in the next four months then we`ll look at his HGH levels. She said that she was taught in Montreal and that depending on where they take their schooling they are taught different ways to prescribe the steroid for adrenal insufficiency because as she put it we don`t know exactly how much cortisol our bodies produce in a day or when under stress and each person is different. She said the idea is that normal everyday stress like teething or simple colds he should be able to handle with a normal dose because otherwise he would be in a stressful state all the time, and he shouldn`t have that much prednisone in his body. She also said when we stress dose him just give it to him twice and after that go back to the regular dose.
This means we`ve been overdosing our son with steroids. Sigh.. Add that to my list of things that make me a great mother. I know I was just following his doctors orders at the time. But somehow it doesn`t make me feel any better. I honestly am just trying to do the best I can. I love him so much. I wish I just instinctly knew how to take care of him without a bunch of stupid professionals who (some of them) clearly don`t know what they`re doing.