Glycogen Storage Disease – StarchWars

Day 3: Shands Hospital- the report card

Posted on 30. May, 2009 by Jillian in Glycogen Storage Disease

We drove back to the hospital and valet parked (my dad said there was no way he’d walk back to the parking lot if he could valet all he wanted for $2 a day). I stopped by admissions and was able to get Mark and Ethan admitted before heading up to see Jonny and Dallin. It took a pretty long time as far as the UF Glycogen Storage Disease Program standards are concerned, but it wasn’t too bad. Again, I REALLY missed Connie.

We got upstairs and were able to play around for a few minutes before it was, what I like to call, “Parent Report Card” time. These always used to make me feel nervous. Okay, that’s a lie, I still get nervous. It’s impossible to catch every single low blood sugar, and since my kids are still so young, it’s still pretty much all my fault if their blood work is bad. My dad watched the kids (poor old man) who were ecstatic to watch Toy Story for the millionth time, while Dr. Weinstein and I went down to the playroom to talk candidly without little ears listening to- or distracting- us.

Most of these levels I really don’t understand. I just smile and nod, and say “Oh, good, his liver function is… good, then?” But there are a few I understand-ish. I found a nice easy to understand post from Dr. Rhema Sayers to explain normal levels for “normal” children.

Their results were…

Dallin: And I quote from his Discharge Summary “All markers of metabolic control were outstanding,” Did you see that? Outstanding! I have it in writing. “and they have improved since last year. In fact, all markers of metabolic control are now normal”.

Cholesterol (should be less than 170) Dallin: 133

Triglycerides (should be less than 200) Dallin: 121

HDL (good Cholesterol should be above 45) Dallin: 48

LDL (bad cholesterol should be less than 100-110) Dallin: 61.

Jonathon: Again, I quote from his Discharge Summary “All markers of metabolic control were outstanding, and they are some of the best labs ever documeted in our program”.

Cholesterol (should be less than 170) Jonathon: 115

Triglycerides (should be less than 200) Jonathon: 82

HDL (good Cholesterol should be above 45) Jonathon: 63

LDL (bad cholesterol should be less than 100-110) Jonathon: 36, that’s not a type-o. 36!!!!!

That’s right, EVERYTHING in normal range for a person without GSD 1a- some of their levels are better than the doctors treating them. Woo hoo! Apparently, there are some doctors who don’t believe that’s possible. Aaaaah, the Weinstein difference. We still work about as hard- if not less- but we’re just doing different things, and the boys are thriving.

Ben and I totally deserve gold stars. (Okay, okay, enough bragging for one post).