I was recently at breakfast with a bunch of D moms catching up and swapping stories about our kiddos. The conversation turned to our medical care here in Houston. A little background...there is one rather large hospital here, Texas Children's, and they are THE place that everyone goes for just about anything. So naturally, when most of our kids were diagnosed, we turned to them. Well, Texas Children's is a fabulous place for just about everything, except diabetes. Here's why:
1. They don't like to prescribe CGM's because they don't have the staff to train on CGM's
2. As previously stated, they are severely understaffed since they take every patient that walks in the door, insurance or not.
3. They have a protocol they follow and will not go above it for anything. Therefore, if you are ready to move to next steps in care (like learning more about nutrition, etc.) they will discourage you.
4. They think every patient and patient's family is on the same education level, Kindergarten. Yet another reason they won't prescribe CGM's. They think no one will check their children anymore
5. My favorite reason: the head of the department has told several people that THERE WILL NEVER BE A CURE.
So, we left Texas Children's a few months ago and chose to go with the University of Texas Physicians instead. They are a smaller practice and much more individualized in their care. They are even opening a new Diabetes Center very soon that will cater to the type 1 community. And, their doctors are involved with the JDRF and trying to find a cure for diabetes.
One of the mothers at breakfast was in tears after the head of the department at Texas Children's told her, "Unless your son is a rat in a cage, he will never see a cure for diabetes." How does someone like this end up working for children. How does someone like this end up being the head of a department for said children? How does someone who is so old school that he doesn't believe in new technology for our kids, end up heading up the endocrinology department of one of the largest and best children's hospitals in the world? It baffles me. It angers me. It saddens me. Sometimes a little hope is just what the doctor ordered for our families.
I think I would have slapped him/her.
ReplyDeletehahaha! Should have!
ReplyDeleteUnless you shoot for the stars, you will never reach the moon, much less the sun. Aim for what you really want, work for it, and you can make it happen, if not alone then collectively. I worked with diabetic kids 50 years ago, in the dark ages, and what is common today was not even been dreamed about then, but it happened b/c so many believed that each next step was possible, and made that next step happen. I firmly believe a cure will be found - for Type 1 - long before they do for Type 2, and that it is just around the corner, now. That person has no business dealing with people, he belong in a lab working with the rats in cages, he discredits his institution and dishonors those who try to make life better for the affected children and their families.
ReplyDeleteWow. This blows my mind. Now, I'm cynical and jaded in my 26 years, and personally and skeptical that if there is a cure in my lifetime, it will not impact my life. However. Seriously, however. I hope. I do what I can as much as possible to hope, and encourage others to hope, and to work in whatever way possible toward finding a cure. What you've described at Texas Children's amazes me, more than just the "non-bedside manner" when it comes to cure talk, but everything else. Wow. Places like that shouldn't be allowed to operate in that way. While it's admirable that they accept anyone who walks in, that can't justify the rest. Hope more patients leave, to send the message.
ReplyDelete