A year ago, I was visiting my son’s (new) doctor to find out why he had lost so much weight, so fast. The doctor, a Nigerian fellow, was very personable and talked a lot about Vitamin D deficiency, on which he had written a paper. We discussed the possibility of parasites, and my son and I left with a prescription for Vitamin D, but no tests having been taken.

Then Thanksgiving happened, when much of the family was together and I was urged very strongly to get a second opinion. At this point, my son was drinking (unbeknownst to me) an unbelievable amount of water. I called the doctor and we went back in. This time, he took a blood glucose test and other blood tests. By the time we arrived home, the doctor had called and demanded that we go to the emergency room at once.

That’s how we found out my son has Diabetes Type 1.

He spent the next 6 days in Intensive Care and received excellent care at the Westchester Children’s Hospital.

One morning, as I was waking up, the teaching doctor was sitting outside our room talking to his students about us. He said, and I paraphrase, “This is a very negligent mother, to let her child get in this state of Ketoacidosis. Although, I must say, my sister is college educated, and it happened to her too.” He has a very loud booming voice, the insult was meant to hit my ears, and perhaps my son’s as well. I think he thought I was a welfare mom or something.

Then I met the doctor who runs the educational program there. I don’t quite understand it all, but it was his practice into which we landed after leaving the hospital.  At that moment of meeting, all I could sense was his GLEE at having yet another life-long patient. It was disturbing, to say the least.

At our first visit at Phelps in Sleepy Hollow, we were assigned to a Pediatric Endocrinologist (PE) in Middletown, the closest office to where we live. It turns out this doctor had just a few office hours, one day a month. Zero flexibility for us. At the six month mark (June), just as we were about to begin the process of getting a pump, I received a call from her office telling us that she would be out until September, and to reschedule everything for then. I was dumbstruck: how do you just leave your Type 1 Diabetic patient for three months without providing alternate care???? Or at least instructions on how to re-order insulin??

I was horrified at the lack of professionalism and foresight, leaving us hanging like that. So, I looked for a new practice, and found that there are VERY few PEs. Very few indeed. So, we called one in Rock Hill and went to him because my son needed insulin. I registered with his office, got all the paperwork done and we saw him and he seemed to me to be a little more cutting edge than the other office, which I liked.  Unfortunately, on this day his staff made a huge mistake, sending the wrong prescription to the wrong pharmacy…. one I had never used in my life, 15 miles away. It was completely wrong information. I was at my wits end as my son desperately needed insulin, and I was getting no response from him or his office (at this point, it was after office hours).

I finally got the insulin, with a very nasty attitude from the people at Crystal Run. I then decided to go back to the original practice, to the very first doctor I had seen once we got out of the hospital, and she has been the person we have been seeing since the last bad incident.

However today she let me know that after we get set up with my son’s pump, we are not welcome in that practice anymore. Why? I make the assumption that it’s because of my  reputation for not putting up with this incredible lack of professionalism. This very small pool of PEs talk to each other, I’m sure.

I have no doubt in my mind that there are forward-thinking, positive, PEs out there who know how to manage patients with integrity and professionalism, and that I will find one. But this entire experience has shown me, if nothing else, how incredibly low the medical profession has fallen. I have stayed away from doctors AS MUCH AS POSSIBLE these past 20 years and with good reason. I’m just sorry that my son has this incurable disease which makes him dependent on them for his very life.

I keep telling him, “You could be the one to find the cure for Diabetes…” and I have ultimate faith in him doing just that, if he so desires.

In the past few months, A young woman just invented an artificial pancreas and now over 400 people around the world are using it very successfully. It’s a simple invention, with open source software that can run on any smart phone, but what sucks is that you still need a prescription for insulin.

I hope the rotten healthcare/insurance industry collapses on itself, and soon. I come from a medical family, but as far as I’m concerned, medical ethics died with my grandfather. These people don’t know the first thing about it.