The Basics: Part I

I thought I should run through some of the basics of Prader-Willi before we dive into all the fun stuff like cooking & baking. We use the system recommended by our doctor of balancing. Claire is to eat a mix of carbohydrates, fat & protein each day. Each of the categories has it's qualifying foods, and not ALL food is considered okay for PWS kids regardless of what category it falls into. It's is a lot more difficult to stay away from these foods than we originally thought. No Hostess products, no pop (or soda for you southerners), no fried food, etc. The ratio we use is 40% carbohydrates, 35% fat & 25% protein to make up 100% of her meals per day. We do try to make sure each meal & snack is balanced as well, so there is no spike in blood sugar. 

This is where the glycemic index comes into play. It's important to balance meals (& snacks) because we never want the blood sugar to drop significantly, giving the feeling of hunger. As you can see from this chart, with the right balance, the line stays steady & doesn't raise & drop. Those quick raises are usually caused by sugar spikes (from fruit, bread, or any type of carb) that isn't balanced out with some protein &/or fat. 

The glycemic index is a tool we use to figure out how Claire's body is metabolizing a certain food. For example: I try to keep a snack of an apple paired with some cheese or peanut butter. Apple is the carb & the cheese is a protein & fat. This is where I reiterate saying this doesn't have to be super duper stressy. I have a list of go-to foods, what category they fall under, and what the normal serving size is for her age/size. I pair it up & don't have to worry that an hour after she eats a snack that she'll be hungry again. 

I will start to add some charts & lists of qualifying foods and some ideas of how to balance meals & snacks so the spikes and drops don't happen. 

I'm a mom who wants to help others with the food challenges of kids with Prader-Willi Syndrome.

Hi! I'm going to attempt this blogging phenomenon to help some of the other families out there who have children with Prader-Willi Syndrome. Having a child with special needs is definitely a challenge, and Prader-Willi is one of those that affects what most of us enjoy each day, several times a day: EATING! 

While our thoughts & ideas about food need to switch gears when we have a child diagnosed with this syndrome, life doesn't have to be super duper stressful. "Life happens, and so does sugar" as our nutritionist once said. I want to help make the transitions easier, choices easier & the balancing a no-brainer. 

I have done loads of research, asked tons of questions to doctors, therapists & nutritionists, and have come up with a good system for our family. Things need to change every once in a while, and we do need to eat out sometimes, but it's the routine & good habits we get into, and pass along to our kids that is going to make all the difference in the world. I do not have a medical background, and I do not promote for your child exactly what we do, but I merely want to share what has worked for us & what could possibly work for you & your family. 

A little background: Our daughter, Claire, was diagnosed at 4 weeks old with Prader-Willi Syndrome. She was 6 weeks premature as my water broke early from quick-onset of polyhydramnios (excess fluid - and I mean A LOT of excess... talk about a camel). We have it kind of easy right now because Claire, at almost 2 years old, still depends on us 100% to feed her & isn't aware of all the other food choices out there. Again, what we do with our daughter isn't for everyone, and as broad as PWS is, this may not work for each individual child. 
Claire has been treated with Growth Hormone since about 4 1/2 months old, is taking some supplements, thyroid meds & is on a twice-daily dose of a breathing treatment through cold & flu season. The first year she did the typical sleep studies to rule out apnea, swallow studies to make sure her swallowing was safe & regular appointments at her Endocrinologist. She has had croup, has been hospitalized for dehydration & had had spells of night-terrors. Other than that, she has been quite healthy, and we consider ourselves extremely lucky. 
Claire had an NG tube for the first 12 months of life, eating from a spoon at about 8 months, but still needing the tube to supplement her formula. We went right from the tube to a sippy cup. We find it amazing that even thought she was tube fed for so long & never took a pacifier, that she seems to have no texture issues with food. She crawled at about 14 months & just started walking a few weeks ago at around 22 months. She does have orthotic insoles for her walking shoes because her ankles turn inward. No signs of scoliosis or hip/back issues.
We moved to southwest Florida in November of 2012 from the Chicago area. The ability to be outdoors & as active as we want year round was a huge draw for us. As you probably know, people with PWS are encouraged to stay active & exercise daily. We also wanted to be driving distance & under the direct care of our favorite doctor, Jennifer Miller. She's amazing! 

My idea for this blog is to share pertinent & up-to-date nutritional information directly related to Prader-Willi Syndrome. Since I do a lot of cooking & baking I'll also be sharing recipes, snack ideas & how to handle different food-related blunders.  I will try to keep it strictly food-based as we all have different approaches to discipline, sleep schedules & all things parenting. 

Thanks!