Second Hospital Day- Improvements

Posted on 25. Apr, 2011 by Jillian in Glycogen Storage Disease

The highlight of the second day was meeting Dr. Weinstein’s new dietitian Kathy. Can I just say, she’s fabulous! Very down to earth, but understanding and compassionate. To top it off she definitely knows her stuff. When you think about it, a GSD dietitian has a very tricky job. Food is a sticky subject at our house (and i think it’s safe to say, most GSD houses). Our family is pretty good at following the restricted fruit, sugar and milk rules, but portion sizes… We have one that LOVES to eat, one that likes it, one that is ok with it, and one that HATES it. The whole spectrum in one family. We’re making tremendous strides with my “hates it” eater lately, but he’s still pretty picky.

Anyway, we gave her the diet chart (filled to the best of our ability- I’m pretty burned out when it comes to those- thankfully, the nurses keep good notes) and she was able to tell almost immediately what we needed to change. We’re going to be working on limiting carbs for our “love it” and “like it” eaters. Their body types just won’t sustain a “normal” food intake in addition to the many calories that cornstarch gives them during the day. The good news is that even though they’re on a diet, we don’t have to count calories, only carbs. That’s not too bad, since we do that all the time to maintain blood sugars anyway.

My favorite quality in the new dietitian, is that she works closely with the GSD patient (not just the parent) to empower and have them take control of what they’re eating, and how much. She has really cool posters and handouts on “portion distortion” etc. that she uses to explain concepts. I really appreciated the “This is what needs to happen so that you can be healthy” matter of fact approach. It would have been easier for her to just give me the guidelines to take home, and have it turn into a “Mom and Dad are restricting my food” moment. We had a lot of questions answered, and it felt like we really came away with a lot of good information, and areas to improve on, without playing the blame game, or any additional guilt.

Let me be clear that I’ve never felt “guilted” at Dr. Weinstein’s hospital, but we have experienced that problem with other dietitians pre GSD diagnosis. I really liked Dr. W.’s former dietitian, but Kathy is on fire. I love how invested she is in the program, and her plans to improve it.