If I were a person who made rash decisions, instead of overthinking them to death, I would have called Matt this morning and told him to put the house on the market, pull Addi from school and figure out how we can move to Philly.
That might sound crazy, but after the appointment with the endocrinologist here, I have lost all faith in the doctors in Arizona.
The doctor we met with today is fantastic. He listened to the entire story from pregnancy till now, took note of all the symptoms we are concerned about, and gave a thoughtful response to our main issues. What was most concerning is that according to Brian’s medical records and from what this doctor can deduce, Brian may have been receiving the growth hormone for over a year without really needing it.
In October 2015, Brian was admitted into the hospital with a high fever, blood in his vomit, and low blood sugar. During that hospital week, here in Philadelphia, an endocrine team decided to do a fasting test. It was through this test that Brian was diagnosed with ketonic hypoglycemia. One part of the test showed that his growth hormone level was low. The doctors in Philly felt that this was not an immediate concern, and instructed us to find an endocrinologist at home who could oversee Brian’s care, and do further testing.
Now, almost 2 years later, we are learning that the doctor in Phoenix did not do the appropriate tests to truly confirm if Brian was not producing a growth hormone. Instead, it appears she misinterpreted the doctor’s notes from Philly and somehow, using just that information, managed to convince our insurance company to allow an MRI of Brian’s pituitary gland, and approve growth hormone medication. Of course, it is possible that another blood test offered more confirmation, but those records seem to have disappeared. It doesn’t help that this doctor shut her doors just this past February, and finding out any information is difficult. What we are certain of is that a main test needed to prove no growth hormone production has not been done.
So what does all of this mean? It means that for over a year and a half now I have been torturing my poor child with shots every single night. It means that Matt and I have put our lives on hold, out of concern for asking anyone to have to administer the shots. It means that wrong dosage or not, none of this was necessary. Or, maybe it was.
Unfortunately, to truly understand if any of this was necessary or not, we have to remove Brian from the growth hormone, monitor his blood sugar levels every single morning, and then put him through many more blood tests. Until the hormone is out of his body, we will not be able to determine if his body is producing any on its own.
The doctor we met with this morning will consult with the endocrinologist we started to see in Phoenix last month. If the doctor at home is on board, then I will remove the growth hormone from Brian’s regimen, we will monitor his blood every morning, and we will perform blood tests in less than a month, which hopefully will give us some concrete answers. One of the tests takes three hours and involves Brian being hooked up to an IV.
In addition to the blood test, the doctors will monitor Brian’s growth over the next 4 to 6 months to make sure he is staying where he should be on the growth scale. Any fluctuation, especially falling off the scale, would help to identify whether a growth hormone issue exists.
That being said, we are looking at flights for October to meet with the gastroenterologist, immunologist and endocrinologist here in Philadelphia to follow up on all of Brian’s care.
The endocrinologist here also decided to run some blood tests to check Brian’s current hormone levels, as well as his thyroid. Thyroid issues are common in Matt’s family, and may explain some of Brian’s issues. Additionally, he is running a urine test to check the acidity level in his urine, as well as protein. Unfortunately, more blood tests means that Brian had to be stuck with the “pointy thing” and is not very happy. Luckily, a new car was able to cheer him up.
Now that some time has passed, and as I sit waiting to hear from the doctor, I have been able to take a deep breath. I’m still seething angry with the state of care in Phoenix. It frustrates me that we have not been able to find a truly good doctor. More so, I am angry with myself for thinking the previous endocrinologist was so great. It makes me wonder if there have been other issues, and that is why she closed her doors.
Today’s appointment may not have brought solid answers to the table, but it did calm some of our questions and fears. For one, the likelihood that Brian will have to be on growth hormone for the rest of his life, if at all, is very unlikely. Additionally, the lack of change in his bone density on x-rays is nothing to be concerned about at this time. It is nice to meet with a doctor who listens to your questions and provides answers.
Waiting seems to be inevitable with our situation. So right now I will wait for a phone call from the doctor. I will wait to see whether I need to stop the growth hormone medication. I will wait to hear the results of today’s tests. I will wait for a plan.
Just like every time before, I am so grateful to be able to be here in Philadelphia and see doctors at the Children’s Hospital of Philadelphia. I truly appreciate everything they and the people we have met here have done for us. I have said it many times before, but I will never regret making the decision to fly across the country to find treatment for my son.
Now I just need to focus on my breathing, calm down, and wait for the next step.