Glycogen Storage Disease – StarchWars

Day 4: Last Day at Shands- 2nd report card

Posted on 18. Jun, 2009 by Jillian in Glycogen Storage Disease, Hospitals, Traveling

Jonny and Dallin are officially “done”. As in, they’ve had enough of being told to sit down and be quiet. AKA they’re being bratty with good cause. I packed everything except my dad’s stuff, and loaded as much in the van as I could with two toddlers on the rampage. I ate a nice breakfast at the hotel, where the same attendant helped me out. She couldn’t sleep the night before until she remembered to put more crystal lite packets. I really like her. And, I was very accommodated with a late check out time so my dad could come back for the rest of our stuff. Then we headed back to Shands.

Now, the whole time Dr. Weinstein was excitedly telling me about Jonny and Dallin’s excellent lab numbers, I had to remind him that Mark and Ethan were definitely having more lows, and not to praise me too much, because he’d be eating his words the next day.

Second Report Card Time: Again, we had my wonderful, can’t express my appreciation enough, father watch the kids while Dr. Weinstein and I headed for the playroom.

We sat down and he said “Good news or bad news first?”

I picked bad.

“Well, Jonny was only the star for one day. The good news is, Ethan beat him”. At this point I have to grab the bottom of my seat so I don’t start dancing around the room, while I pretend that I’m one of those cool people that never cries or jumps for joy. I don’t think Dr. Weinstein bought it, but…

The results were:

Mark: Just a reminder, Mark was 3 ½ years old by the time he was FINALLY diagnosed correctly. To give you some perspective, I’ll put what his levels were in February of 2004 (several months before a firm diagnosis) and his results now. Plus, like in the previous post I’ll put what is “normal” for a “normal child”. I didn’t take a lot of time researching the normal numbers, so if they’re wrong, or you find a better/ more accurate link, someone please correct me.

Cholesterol (should be less than 170)                                    2004: 235             2009: 115
Triglycerides (should be less than 200)                                2004: 2546          2009: 91
HDL (good Cholesterol should be above 45)                       2004: ???               2009: 46
LDL (bad cholesterol should be less than 100-110)         2004: ???               2009: 51
Uric Acid (not sure of normal levels)                                     2004: 7.5              2009: 4.1
AST/ALT (Measures liver damage- normal levels between 5- 60 according to this article)
AST                                                                                                        2004: 596             2009: 28
ALT                                                                                                        2004: 668             2009: 23

Abdomen description: 2004: “ Distended, liver 11 cm below the costal margin.
2009: “ Liver with non-tender edge 3.2 ccm below costal margin; (-2.0 cm since last year)”

Woohoo Mark! Did you see how much his liver has gone down?!?!?! His stomach looks perfectly flat to me now.

Ethan: Reminder- he was about 20 months old when diagnosed.

Cholesterol (should be less than 170)                                    2004: ???                 2009: 99
Triglycerides (should be less than 200)                                2004: 655               2009: 81
HDL (good Cholesterol should be above 45)                       2004: ???                  2009: 48
LDL (bad cholesterol should be less than 100-110)         2004: ???                 2009: 35
Uric Acid (not sure of normal levels)                                     2004: 7.6                2009: 4.1
AST (5-60)                                                                                         2004: 398               2009: 27
ALT (5-60)                                                                                         2004: 434               2009: 23
Abdomen description:

2004: “protuberant.” apparently, no real measurements were taken at that visit. Perhaps because he was a screaming  17 month old?
2009: “ Liver with non-tender edge 3.6 ccm below costal margin; (-1.6 cm since last year)”

Haha! Take that you life-threatening liver disease! We’re winning this war!!!!
Again, for more bragging, all four of my boys received a description of “outstanding” and “now normal” in their evaluations.
And the sugar-free icing on the proverbial GSD friendly cake- Dr. Weinstein actually described me as “laid-back” to another physician. No one reading this blog is allowed to disillusion him.