Monday, November 12, 2012

FPWR Conference 2012 - Melanie Silverman, MS, RD, IBCLC

We are back from the FPWR conference in Philly! It was an absolutely wonderful weekend seeing PWS families new and old and getting to learn so much about PWS research and other important topics. We are so thankful to my parents (aka Papa and Bidon) for watching the boys so that Bob and I could go and enjoy the time and the information ourselves.

Many people who couldn't go have already asked for notes, so over the next few posts, I am going to include my notes from the various sessions (maybe not from the super-scientific ones, because those might not make much sense anyway - haha!). Keep in mind that I wrote some of these items down in incomplete sentences or thoughts, so please ask questions if you have them!

The first speaker was Melanie Silverman, MS, RD, IBCLC, of Feeding Philosophies. She is just great. Melanie has had a ton of different experiences working as a dietitian in various hospitals and has now become quite familiar with PWS. Here are the notes from her presentation:

Melanie Silverman
Understanding Optimal Nutrition in Prader-Willi Syndrome
-importance of structure and meal scheduling
-post menus and rules for mealtimes (even if you’re kids can’t read, use pictures) so the expectations are out there
-no distractions at meals (no video games, DSs, iPads, etc.)
-family meals are important

Activity is also important so you’re burning calories → taekwondo?

PWS plate → mostly veggies,
Grains with more than 3g fiber per serving
High-quality protein – eggs, nuts, cottage cheese
Fruit, but no fruit juice
Fats like oils, flax, avocado

Fats are used for energy, hormones, insulation, absorption of vitamins A, D, E, K

“food should rot” → if you see a long ingredient list, run the other way!

Glycemic Index:
high glycemic → 70 or higher
low glycemic → 55 or below
→ but glycemic index isn’t everything… need to look for other factors…

for pooping: insoluble fiber, soluble fiber, fat, and liquids
soluble: oats, peas, beans, apples, citrus, carrots, barley
insoluble: nuts, veggies, whole-grain
Looking at nutritional labels → look at the fiber first

Children and adolescents with PWS:
10-11 cal/cm to maintain growth velocity
8-9 cal/cm for slow weight loss or to support linear growth
Adults → 1,000-1,200 cal/day

Some evidence that not all calories are equal in PWS. Better suggestion for PWS is:
(from Dr. Miller’s study)
carbs: 45%
Protein: 25%
Fat: 30%
Fiber: 20 grams per day

Oatmeal with ground flax seeds, roasted pecans, and raisins
Tuna or salmon salad on cucumber slices, apple
Eggplant lasagna (roasted eggplant as the noodles), and a cup of berries
Roasted chicken, asparagus, salad
Taco salad
Spaghetti squash and sauce
Greek yogurt and granola
Whole wheat waffle, eggs, bacon
Kale chips
Places to calculate nutrition:

Look up artificial sweeteners on Mayo Clinic website
Monk fruit sweetener → monk fruit in the raw – fewer than 3 calories and zero grams of carbs
No sports drinks
Jury is out on how bad artificial sweeteners are
Bigger picture with artificial sweeteners → they are coming from packaged and canned foods, which are not real

90% of diet comes from fat
measure ketones in urine to see how body is using fat as energy
→ lots of dangers, would not recommend this diet right now


Janis said...

Thanks Ali.

heather said...

Thanks for sharing!

Unknown said...

Wonderful! Thank you SO much for taking the time to do this.

Deb Hanley said...

Thanks Ali! I am curious to know....what is the reasoning for no sports drinks?

Also, if anyone uses MyFitnessPal to track calories, it is for "adults only".

Can't wait to read your next installment!

Ali Foley Shenk said...

Deb, that was actually the part of the presentation where I had to go to the bathroom (it was questions and answers). But Bob was there and said it was because of the artificial sweeteners/colors. He can't remember if there was anything else. Also, someone asked about regular Pedialyte for hydration and Dr. Miller said no because it's too high in sodium.