Northwoods Fat Free Cheese

Just as I was beginning to despair that I would never find a good source of fat free cheese in Europe, I finally found the web site for our favorite brand of it:



Northwoods Cheese Company



I don't know why it took me to long to find it.  Many Amazon searches and combing through German grocery store dairy aisles later, I have now ordered two 5 lb blocks of fat free cheese that we have cut into smaller servings and frozen, AS WELL AS two new flavors of cheese to try (swiss and garden vegetable), AS WELL AS fat free string cheese.

Cheddar!  String cheese!  SO GREAT!

As a child, I was a big string cheese eater.  It warms my heart to have another easy and healthy snack to give my LPLD girls.

Customer service has been second to none with figuring out how to get this perishable foodstuff over to our far away location.  Admittedly, the cheese and ice packs are no longer cold by the time the package reaches us, but it looks and tastes perfect!

I may continue ordering from them even when we move back to the states, just because we go through SO MUCH of this cheese and it's cheaper in bulk.

Low fat chocolate cupcakes!

I am in love with a new recipe.  You have to LOVE chocolate, deep dark rich chocolate.  But my girls do!


Skinny Double Dark Chocolate Cupcakes



The only thing I changed was using coconut oil instead of the vegetable or canola oil listed in the recipe.  If you consider the full fat of the recipe, it comes out to 3 g of fat per cupcake.  If you count coconut oil as half the fat, then it's only 2 g of fat each!

Glorious low fat chocolate cupcakes in the oven

I LOVE it when I make a recipe with Monica and she can lick the bowl.  Isn't that the most perfect goatee?  Haha.

So many cupcakes!  The ones in the back with the lovely cracks across the top were in the top of the oven, the ones in the foreground were in the bottom of the oven.  Go figure.  It all gets covered with frosting anyway!

The frosting is certainly unique.  Basically just honey and cocoa powder.  Wha??  Right?!?  But it's a deep dark rich chocolate frosting, with really no hint of the milkiness of milk chocolate.  Interesting!  And tastey!

Ready for Monica's birthday celebration at school!

Kindergartener approved!

The recipe in the works!

Happy 6th Birthday Monica!  It seems we've finally found a chocolate cupcake recipe that works well!!!

Dirty Little Secret

My daughter eats like she has LPLD.  Because it's what keeps her healthy.  Because she has LPLD.



But me?  I don't.



For some reason, I imagine that in other families with a child with LPLD, the whole family eats like they have LPLD.  But we don't.

Foreground: LPL safe cake.  Background: fat-filled cake.  And a small child's hand going for the frosting that I did not notice while taking the picture.  Ha!

We sometimes all eat the same thing, like pasta primavera, or a chicken stir fry, or my husband's amazing orange chicken (once I nail down how he makes it, I'll post it!).



But most meals?  Not so much.  We'll start cooking all the same way, but then at the part where we add cream or butter, we'll pull Monica's portion out (or enough for Monica's meal plus leftovers for her), and do something slightly different with it.



So the recipes I include on this blog are what I do with Monica's portion, but it's not what I always eat myself.  I feel guilty admitting this to you, dear readers, especially, because for the most part I try to be really upbeat about this diagnosis - it's not so hard!  Look at all the things you CAN eat!  And it's controllable by diet, without weird medications with crazy side effects, how lovely!  And so I feel like I'm cheating you, since it might not be ALL bad, but it's certainly hard enough that I don't personally eat an LPLD diet.  Sometimes I'll even add fat to the rest of the family's food more than what it really needs, especially Mary's, since she doesn't have LPLD and because fat is a necessary part of nutrition, and I worry Mary doesn't always get enough of it.


Even with Monica sometimes I feel like the goal of cooking is to put as much fat as she can handle into her food (which isn't much), and to make sure it's as tastey and nutritious as physically possible so she get's it all!  That's why we do grass-fed meat, wild caught fish, expensive butter, and coconut oil; it's not entirely that I'm a food snob!  When Monica DOES get to eat fat, it's going to have all the essential fatty acids and fat-soluble vitamins that I can find!


As for my husband, Mary, and me, we eat a pretty normal-fat diet.  I don't think Monica feels left out or separate from us, since our food generally looks similar, but it does cross my mind that if I were the best possible mother, I would eat exactly what she does.  But that's not realistic.  Monica is different, and she will be eating differently for the rest of the life.  Pretending her diet isn't different will make me feel better now, but it won't develop the coping skills that she needs to have for the rest of her life.  It sure hurts momma to see your baby developing coping skills, though!


In addition, I have been breastfeeding and/or pregnant every day of Monica's life, and I need fat for my babies.  It's not good for me to be on a drastically low fat diet just for me to feel better about Monica not feeling left out, as that would hurt my other children.  (I will always be curious as to whether a baby with LPLD that is in utero can somehow process and obtain fats in a way that the baby can't after that umbilical cord is cut... I'll let you know if I find an answer to that!)


So, that's my confession.  All the recipes that I post here are pretty tastey and awesome, but they are not what I eat myself all the time.  I don't post the fatty things that I eat because I want anyone with LPLD to feel welcome here, and not exposed to references to tastey things they are trying to avoid.  So, bring on the angel food cake!  Yum!!

Why I'm Not Thrilled About Glybera

Have you heard about the cure for LPLD?  It's been making news for a few years now, but just in case you don't listen to the same news I do, here's the deal:

What:  Glybera is the brand name (like Tylenol) for alipogene tiparvovec (like acetaminophen), and it is a therapy with the goal of replacing the lipoprotein lipase enzyme in large muscles of the body in patients with LPLD, to make the symptoms and the disease go away.  In order to make the body make LPLD, the drug has to get a gene sequence for the LPL gene into the DNA of the patient.  Gene therapy!   It is undergoing testing in Europe.  From what I've heard, it was denied the chance to do testing in human subjects in the US at this point.

Who: Glybera is manufactured by the company uniQure.  I am always wary of pharmaceutical companies because they stand to make a lot of money off of patients. 

How:  After receiving an epidural-type numbing medication (or being sedated), patients receive up to  60 injections into the large muscles of their legs to introduce the DNA that will join up with their own DNA and start to manufacture the lipoprotein lipase enzyme.

Where:  Lipoprotein lipase is naturally located in just about every tissue of your body.  The injections are only into a big muscle because the muscle is easy to get to, and your legs use a lot of energy, so they could definitely benefit from the extra energy contained in those pesky triglycerides, taking them out of the blood!

When:  All the individuals involved in the studies have been adults.  No one is even thinking of using this in kids anytime soon.

My LPLD girls!

Why:  That is the question!  Why would this treatment be right for you or your loved one?  I have to admit, I would have to be having a lot of trouble with my LPLD to consider this treatment.  And there are plenty of people out there that are!  As for us, here is my take:

Pros of Glybera:

• First gene therapy to be approved (in Europe), ever!  How cool is that!  We are entering the age of gene therapy, a topic of sci fi novels for ages!
• Well designed testing and treatment - I have a little bit of a background in research and with the adeno-associated virus that they use to 'infect' the patient's cells with the new DNA, and I find it all very clever and exciting!
• Rare diseases like LPLD hardly get any attention from drug companies, it's wonderful that someone is looking into a cure!

Cons of Glybera:

• Price tag of $1 million.  Yikes!  Admittedly, it might be a fair price given all the research that has gone into it, and the small percentage of the population that actually has LPLD and therefore might benefit from the treatment, but for a disease that can be largely controlled by diet, that's a tough call to make.  For my family, without any episodes of pancreatitis, it's not worth it at this time.
• First gene therapy to be approved (in Europe), ever!  How scary is that!  We are entering the age of gene therapy, a topical of sci fi novels for ages because there is SO MUCH that we can imagine going wrong when you start to mess with DNA.
• Effectiveness - from what I've seen, this treatment will not let an individual with LPLD eat like someone without LPLD.  At best, an individual experiences fewer episodes of pancreatitis, while maintaining a very low fat diet, than they did before.  But maybe that's because the only patients trying this out are ones who have many episodes of pancreatitis in their history.  Maybe someone with LPLD who has never had pancreatitis would get to eat macaroni and cheese every day, and still not get pancreatitis.  An interesting thought... but it's a lot of money and pain to go through just for mac and cheese!
• Longevity - from what I've seen, the effects only last maybe 10 years.  Maybe less.  After that, maybe you spend another $1 million to get retreated?  Or you go back to eating the very low fat diet you were on before?  Hmm.
• Immune suppression - patients with LPLD may have to take additional medications so that their immune system doesn't fight off the DNA that Glybera is introducing.  This means the individuals may be more susceptible to other infections, since their immune system is kept from working as well as usual.
• Not an option until my girls are 18, at least, anyway!

In summary: it's best to control this disease with diet.  For those who struggle with dietary control, especially if you were diagnosed later in life or have developed diabetes, and are suffering from numerous bouts of pancreatitis every year, this might bring hope of better control.  This treatment is incredibly expensive and not available in the United States, so, in the meantime, I will continue to do all that I can in my little blogging world of making dietary control a less daunting!

Interested in a more detailed description of the trials Glybera has already gone through?  Try here

Thoughts on parenting a child with LPLD

How do I teach my child to cope with this in a healthy way?
I want my daughters to understand, for sure, that if they eat too much fat, they will get sick.  They've never had pancreatitis to remind them with memories of severe pain, and I hope they never do.  My daughters, therefore, have to trust me, or maybe experience for themselves the milder stomach pains that some people with LPLD get when their triglycerides are too high.

The stereotype of adults that had childhood chronic disease, whether it's leukemia or diabetes, is that they never grow up.  They have had every detail of their lives managed for them since they were little, since it was necessary to keep them alive, but then as a result they never learn to take care of things by themselves or manage their own illness.  I've talked with parents of kids with severe food allergies and my friends who have childhood, or type I, diabetes to help me to try to prevent this.  

One way that we address helping her be in charge of her own disease is that, as Monica grows up, we expand our discussion of LPLD and what it means.  So, as a toddler, we would say certain foods would 'make her sick' and other foods would 'help her grow big and strong' (and other foods, like candy, are 'treat foods' that do not make her sick, but also don't help her grow big and strong).  As a preschooler, we expanded a little, with foods that she could eat a little of if she ate a good (non fat) meal, like a slice of avocado after a big bowl of non fat pasta.  That was our attempt to teach her balance at that stage.  Admittedly, it is hard to differentiate between a 'reward' for eating a big healthy meal, and a 'natural consequence' for eating low fat meals.  But we're trying!

Now as a kindergartener, we can discuss things a little more, and gradually introduce her to the idea that what matters most in deciding if she can eat something that is high fat, is 1: whether she thinks she can stop herself after just a bite or two, and 2: what fat she's had to eat for the last week, and whether she has special events coming up in the next week at which she might want to eat more fat.

Graham cracker gingerbread houses with nonfat frosting and nonfat candy! The Holidays are a tough time for budgeting fatty foods

What happens as a child with LPL grows up?
Medications don't work for this disease, as they all (at this point in time) work by altering the LPL enzyme; but people with LPLD don't have the LPL enzyme, so the medications don't work!  Surprisingly, individuals with LPLD don't seem to have many problems with heart disease or cholesterol buildup in the heart's blood vessels, which is usually why people with high cholesterol go on medications in the first place!  What good news!  The big lifelong consequences of LPLD seem to depend on pancreatitis; the more times the triglycerides have gotten high enough to cause pancreatitis, the more damage there is to the pancreas.  The pancreas functions in controlling blood sugar levels, and so with lots of damage, an individual can develop type II diabetes (and its own inherent medications, difficulties, and diet changes!).  The pancreas also puts enzymes into the digestive system that help breakdown food, and so with lots of damage, an individual can have chronic digestive symptoms such as bloating and foul smelling diarrhea, called pancreatic insufficiency.  The main goal in controlling LPLD, therefore, is controlling the diet to avoid having pancreatitis.

As a parent, I worry that fat will be set up as something Monica can never have, as something so delicious that she longs for it, the forbidden fruit.  That will set up trouble for when she wants/needs to rebel against us, as her parents.  When Monica is a teenager, we want her to rebel against us by wearing silly clothes, using offensive language, and getting her ears pierced without permission.  We don't want her to have a milkshake and a Big Mac.  That's why we use the phrase '(that food) will make you sick' instead of '(that food) is bad' or something similar.  Her getting to eat a fatty food should never have bearing on her behavior, her sweetness or naughtiness (our children are always inherently 'good,' and never inherently 'bad;' that's what I get for marrying a philosopher :) ).   Getting a spoonful of peanut butter is not a reward for doing chores, but it could be something she gets after eating very low to non fat meals for a while, as a natural consequence rather than a reward.  It's a small difference, but one we hope to emphasize to Monica and prevent her from getting pancreatitis, even as she matures and grows away from us as her parents.

Teresa laughing with her uncle - there are joyful things in life besides food!  But sometimes with LPLD it's hard to remember that.

But it's not fair!
Children with LPLD and their parents, alike, have this thought.  Frequently.  A lot of the solace in our family comes from our Catholic faith, and our (continually growing) understanding and acceptance of why God allows bad things to happen to good people.  We talk with Monica about Heaven, where she won't have LPLD anymore.  We talk about offering up her sacrifices for other people who are suffering (basically, praying that God might take away the suffering of someone else, even just a little bit, if you accept your current suffering without complaint, emulating even just a little Christ's suffering on the cross (this works for parents watching their child suffer, too)).

Monica's food choices have also helped me to realize that everyone in the world has foods that they should be eating in moderation.  It's not just Monica.  Yes, Monica's restrictions are more immediately life-threatening and painful.  Most people will suffer from their poor eating choices with heart attacks and the like years down the line, and Monica faces her consequences sooner.  Which, in a way, is a good thing, that it's easier to eat appropriately when the consequences are so close.  OK, OK, I'm kind of grasping at straws for 'good things' about having LPLD.  But it is true that everyone has foods that they should eat more of, and foods that they should eat less of.  Some people just get to ignore it for longer than Monica does.  Somehow this brings me comfort.  Sometimes.

What about my child's children?
Whether Monica and Teresa's children have LPLD, or are just carriers of it, depends on the genetics of who they marry. Since Monica and Teresa are women with LPLD, they will have particularly rough pregnancies and difficulties breastfeeding, possibly.  But that's a long post for another day.

Merry (low fat) Christmas!

Snack ideas!

If you have the time and patience to walk through the granola bar and cookie areas of your grocery store and look at the nutrition facts of every box there, there may be a surprising number that is LPLD-safe!  Well, surprising if you're like me and you expect there to be ZERO, ha!  We let Monica have bars that have up to 3 g of fat per serving as snacks at school, since our school says it's too much of a hassle to require every Kindergarten parent that brings in snack to make sure it's Monica-safe AND we don't quite have the time and energy to bring in fresh cut up fruit and vegies every single day for snack AND lunch!  So there's actually a wide variety that she has in her own personal 'snack bag' at school for when the snack provided is too high fat (or the teacher isn't sure if it's too high fat).  Monica's favorites are the ones with chocolate!  But as for day-to-day, we like to stay away from snacks that come in bags and never ever seem to go bad.  Here is a list of our favorite snacks:

(Fat free) yogurt with jelly

(Fat free) yogurt with honey

(Fat free) yogurt with a tiny amount of granola or chopped nuts

Popcorn!  air popped or cooked in a small amount of coconut oil

Popcorn with salt

Popcorn with honey

Popcorn with salt and sugar (I am ALWAYS burning this kettle corn lately, sigh)

Carrots with fat free ranch dip

Kiwis cut in half and peeled

Apples with peanut butter dip

Strawberries, blueberries, blackberries, any berries!

Even better if you pick them yourself!

Frozen peas (crunchy and tastey, have you tried them??)

Peeled oranges

Other sliced fruit, especially with yogurt dip (yogurt, honey, and vanilla extract)

Sliced fruit with peanut butter dip

Edamame (look with frozen vegetables in the store)

Cucumber sticks

Pickles! Lots of varieties, all non fat!

Cherry tomatoes

Sliced tomatoes dusted with a little salt

Pea pods

Cauliflower

Broccoli

Sliced bell peppers

Fat free tortillas with lunch meat and nonfat cream cheese, rolled up and held with a toothpick

Cubes of fat free cheese (with grapes and apples to be extra fancy)

Low fat muffins!

Dates (super sweet!)

Honey/jelly sandwich

Honey/banana (or other fruit) sandwich

Jello jigglers! from a mix or from this recipe from Kitchen Stewardship

I was so happy with how these candy corn Jello things turned out!

Bean dip (mashed up canned beans, maybe with a little yogurt to make it more dip-y) with fat free tortillas (add cheese to make little quesadillas!)

Brown rice with pasta sauce

Applesauce!

Fruit smoothies with fat free yogurt

Raisins and other dried fruit

Egg white with a few vegies sauteed in

What else do you have to add to this list?

School Lunch Extravaganza!

We are into our second year of packing lunch for Monica every day for school, and have yet to wish we could just pay for hot lunch provided by the school. In part, because its just not an option! My husband volunteered weekly last school year to help prepare and serve lunch for Monica's school, and he was dismayed at what the kids were being served, its unappetizing and unhealthy lack of freshness and variety.  I wonder how often we would buy hot lunch if Monica didn't have LPLD! But just because hot lunch isn't an option, doesn't make packing lunch every day an easy task.

A lot of my inspiration for these ideas has come from Kitchen Stewardship. She has many posts on how to make school lunch healthy and easy, but I found this post the most helpful.

Bran muffin, jelly, sliced apples, almonds, yogurt in a Squooshi!

My #1 tip is: Don't let your child throw anything out! No trips to the trash at all. This is threefold: one, because for the sake of the environment we use all reusable lunch ware and it is so expensive, you do not what anything thrown out by accident! This way, we don't even risk the container being thrown out with the uneaten food. Two, you get to see exactly what your child ate, which is super helpful for estimating their fat intake for the day (and guessing as to whether they can have a slice of avocado on their taco for dinner, that sort of thing.) Three, your kid gets that much more time to eat instead of having to spend time at the crowded trash can with everyone else. I don't know about you, but my five year old cannot be rushed through a healthy meal. She is more likely to starve then to scarf food down, she needs every precious moment!

Yogurt, wrap with jelly and fat free cream cheese, pickles, 'trail mix,' juice!

Our favorite reusable lunch options include: this bento box, these squooshies for yogurt or applesauce, dip containers, and bento type forks and toothpicks to make it more fun, then add a stainless water bottle (sometimes with water kefir instead of water), a few plastic or metal forks, and a cloth napkin. Don't forget silverware!! When you forget those, your kid can spend half their lunch time finding some, and time is crunched as it is.

Muffin, yogurt, almonds, yogurt, half a banana!

When we have the energy, we try to make Monica's lunch extra fun. I guess I figure if your kid can't eat the most fun food, at least make it look awesome sometimes! We use cookie cutters on sandwiches, fun notes, and colorful toothpicks when possible. Though Monica reported that kids are mostly jealous of when she gets popcorn for part of her lunch. Popcorn is whole grain, fun to eat, and very low fat! Winner!!

One thing we embrace for lunches is giving her leftovers. We will often ask Monica at dinnertime, if she seems to be particularly enjoying it, if she would like to eat it for lunch tomorrow as well, and she is frequently enthusiastic! She is fine with not warming it up (my kids prefer their food cold, anyway, sigh) and although I imagine it to be a little weird or embarrassing to have a small casserole full of vegies while your peers are eating hot lunch pizza, Monica loves it and hasn't complained. Try to remember to put it right into the lunch container after dinner to minimize thinking and packaging later. Just one more step to make life easier!

Sometimes we make lunches of just snack type foods, and those are some of Monica's favorites.  I can't say I would be thrilled with a lunch of cherry tomatoes, orange slices, pickles, almonds, fat free cheese cubes, and popcorn, but it hits all my food groups (fruits, vegies, protein, dairy) and Monica gobbles it up.

Kiwi, hard boiled egg, yogurt, noodles with our homemade pasta sauce!

Are these pictures helpful?  Should I provide some more for inspiration for you?

Ingredient Essentials

A Tour Through Our Kitchen

Our kitchen has certainly changed since Monica was diagnosed!  I've always enjoyed some weirder or more complicated aspects of cooking and trying new things in the kitchen.  I remember trying to make after-dinner mints when I was in elementary school and winding up with cookie tray upon cookie tray of mooshy, minty, blue puddles.  Yuck!

The first thing we changed when Monica was diagnosed at around 18 months was her milk.  We gradually switched her from whole milk to skim, a week at a time.  First we started filling her bottles (yep, she was definitely still drinking from bottles at that age) with a quarter of 2% milk, three-quarters of whole, mixed together.  After a week of that, she had a week of half a bottle of 2%, half of whole.  Then a week of a quarter whole, three-quarters 2%.  And so we went from whole to 2% to 1% to skim without much difficulty at all.  It took a long time, but just by this one change we were able to drastically reduce her triglycerides.

We do drink organic milk when we can, but there's nothing wrong with drinking conventional.  With milk, we are a little worried about hormones in the milk affecting our girls.  But if money or groceries ever came down to choosing conventional milk or no milk at all, we would be buying up that milk, no matter what!

The hardest thing for us to do without was cheese.  What I did at first was learn to make my own; we were living in Las Vegas at the time, and I was able to get milk from Trader Joe's that would make a survivable mozzarella.  The hardest part of making milk, in my opinion, is finding milk that will actually turn into cheese instead of, well, mush!  I had many many heartbreaking episodes.  I used recipes and supplies from The Cheese Queen and would make large batches and freeze what we weren't going to use soon.  I made mostly mozzarella and sometimes cheddar.  I rarely ate it myself because it was so precious; we would really only use it on pizza for Monica.  It was crumbly and not particularly flavorful, but it was full of calcium and it melted sufficiently.

Then a miracle occurred.  Look what we found at Whole Foods:

MIRACULOUS!

I am still amazed that this exists.  I want to buy stock in their company.  I rarely get to go to Whole Foods anymore, since we live in a much smaller town without one nearby, but when we go to the city or visit family, I literally buy them out of this stuff.  It freezes great.  It's admittedly ridiculously expensive, something like $6.90 for each of these blocks.  But man.  We never let it go bad since we freeze it, and it melts beautifully and Monica loves it.  And, perhaps most importantly, I don't have to deal with the hassle and stress of making (and often failing) at making cheese.  HURRAY!



These are sold at our local hippie shop and I couldn't believe the ingredients.  No, really, I asked the shop owner to call her supplier to confirm (another reason I love this store).  Can you read the ingredients?  I made it extra big to try... just flour and salt!  That's it!  So lovely!  Admittedly, we will often lightly fry these in olive oil as a special treat for those of us without LPL, but being able to serve the same food to everyone in our family feels so good.  My next project might be to try to get good at making these myself at home, since we won't be living in this town forever.  Nothing like having a backup for my first few attempts that might fail right when dinner requires their success!



Sauces are key.  At least for toddlers.  Look at all these vinegars that we have on hand all the time for different flavors!  White wine, balsamic, red wine, and rice; lemon juice can really kick flavor up, too.  My husband has become quite the sauce-maker!



Sometimes a from-scratch dip or sauce is too much to ask for.  Ketchup, barbecue sauce, fat free salad dressings, even pickle relish and sauerkraut all can save the day.



Our girls seem to adore anything with tomato sauce.  We make a giant batch about once a month and freeze some of the jars, but we will use a store bought sauce, instead, in a pinch (canned or glass both work great, check the nutrition facts on jarred sauce though!).  Soy sauce is another key item that Monica will eat as a dip or a sauce.  Molasses is a nice sweetener for my girls because it packs some extra iron for nutrition (apparently girls who don't get enough iron end up having more trouble in school, interesting!).  Maple syrup and honey are handy for turning a regular snack into something special without any fat, in addition to a fat free topping for pancakes and waffles.



There's the honey!  Yum.  Jellies and jams are fat free.  We like to have a jar with a lid poked with holes, filled with a cinnamon/sugar mix for putting on top of toast or snacks that could use a little extra something.  Like sliced apples.  Delicious!




Greek yogurt and fat free cream cheese are for the times when you need a little creaminess, or a creamy dip!  I'll even add these to peanut butter, to make a peanut buttery dip that's lower in fat and higher in calcium.  Win-win!  The yogurt pictured is a container of full fat yogurt that I have filled (see the label on top in marker? ha) with yogurt that I made myself with a perpetual culture that I bought from Cultures for Health almost a year ago.  It's lasted that long!  It might be cheaper to make organic yogurt than to buy organic yogurt, but I'm not positive.  It certainly uses less packaging, and I find it easy and enjoyable.

The blurry cultures that we use the most - sourdough (for our pizza crusts) and Greek yogurt.

Another way to add creaminess to a dessert or sweet recipe; fat free sweetened condensed milk.  Apple sauce is the classic baking substitute for butter; moist baked goods without the fat!



I bought this years ago for a biscuit mix for backpacking, but I'm starting to use it in Monica's baked goods.  One teaspoon is supposed to replace one egg, but I'm finding it's a little too strong at that ratio!  It contributes to the 'gumminess' of baked goods, the 'stick-together-ness,' if you will.

What about desserts?  Angel Food Cake is a staple; I once found a box that listed a recipe for how to make angel food cupcakes that I cut out and will save forever.  Elementary aged kids just HAVE to have cupcakes sometimes, it seems.  I'll top it with an egg-white-and-sugar frosting, or with sliced fruit or a sugary fruit sauce.  We keep a few, pre-frosted, in the freezer for emergency cupcake needs (what, you've never heard of those?  They happen.  Mostly when parents at school don't give us a heads up that they're bringing treats for their kids birthday.  Monica has been the kid in the corner trying to look cheerful sipping water as the kids around her demolish their brightly colored sugary treats one too many times for this mom...).

This is our favorite brownie mix ever, an awesome find at Trader Joe's, that I believe they have discontinued.  The best part was that they had a single serving size recipe that has helped us immensely in tight, last minute, fixes.  Like before Thanksgiving (What?!?  No pie that she can eat?!??) or other kids birthday parties for which I didn't plan ahead.  You mix two tablespoons of the mix with one tablespoon fat free greek yogurt, stir it up real well in a mug, microwave it for a minute, et voila. Add marshmallows or sprinkles for extra gold stars.  Anyway, I'm currently using my last box to compare my experimental mixes with, to try to make something myself from scratch in case I never find it at Trader Joe's ever again.



If you have a sorbet or cupcake that is less-than-exciting (definitely happens with baked goods are this house, often), sprinkles are a great way to save the day.  The bigger granule types can sometimes have small amounts of fat.  The tiny crystal types are basically colored sugar and are totally fat free.  Or put some chocolate syrup on top, also fat free.  Or both!



Dream whip is powdered whipped cream that you can mix up with some fat free milk for a last minute dessert topping.  I know they sell 'fat free' whipped topping at stores, but my general rule is that if I can choose between a food that will go bad, and a food that seems to never go bad, I choose the food that can go bad.  Preservatives?  Real-foodiness?  I'm not sure.  I don't know if I'm supported by science in this, but that frozen whipped topping weirds me out.  Dream whip, less so, but it's still not something we eat on a weekly, or even monthly, basis.  The Jell-O pictured I've had for at least 5 years... but the real gelatin that we use isn't nearly so pretty.  It's off-white and in a giant bag since I use it a lot.  I use recipes from Kitchen Stewardship that consist of just gelatin (from Azure Standard) and juice to make jigglers that the girls love.  Not too much sugar + fun shapes and colors = dessert!



The few other LPLD folks I've ever met swear by these, so I searched far and wide to find them.  They are fat free and have chocolate and marshmallow and are so tasty that even people withOUT LPLD love them.  I buy boxes and boxes whenever we find them.  It is so hard to find chocolate things that Monica can eat (pretty much this, chocolate syrup, chocolate brownies that I've already mentioned... that's it.  LPLD is rough on chocolate-lovers).



For snacks, a fruit leather is perfect for all my girls.  Well, not very filling, but it's something that everyone can have, at least, and can live in my purse forever in case of emergencies.  These are my favorite, sold by Azure Standard.  They are thicker than you would expect any fruit leather could possibly be and are all delicious.  And I can buy them in bulk!



Finally, for the small amount of fat that my lovely LPLDers DO get to eat, how do we make sure it's the best, with lots of fat-soluble vitamins (A, D, E, and K!) and essential fatty acids?  I'm currently figuring out how to make breastmilk work; they make fat free formula for babies, but in my opinion, if your baby hasn't had pancreatitis yet, then the benefits of breastmilk outweighs the scary high triglyceride levels!  I'll keep you posted on how things go with Teresa, our newly diagnosed 6 month old, and the milk separator that I have ordered (from the Ukraine.  Huh.)  Our geneticist recommended that Monica get 1 mL of walnut oil every day when she was first diagnosed.  It is chock full of lots of good things, but how do you get a kid to swallow straight oil?  For about the next two years, I would get an ice cube tray and put 1 mL of walnut oil in each spot, followed by two small spoonfuls of sugar and one small spoonful of cocoa powder.  I would mix each cube spot meticulously, and then Monica would get to eat a scoopful of her very own 'chocolate' every day!  We kept it in the fridge and it worked well, but now I use the walnut oil in muffins for her, and hope it adds up to approximately the right amount of good stuff, even if she doesn't eat a muffin every day.  She is also older now and eats a greater variety of food in general, as opposed to as a toddler, when a day's intake might include three noodles and an apple slice, and that's about it.  A toddler will ALWAYS eat a spoonful of sugary, gritty, oily chocolate, it turns out.

That's maybe the hardest part of raising a child with LPLD; balancing enough fat for brain development without getting close to pancreatitis.  So we do try to make sure she gets some fat every day, and try to make it the best possible fat.  Coconut oil is a great one.  Eggs aren't pictured but we use frequently (5 g of fat each!), both whole and separated for their whites (mom and dad get more cream brulee and home made ice cream with lots of egg yolks, darn!).  We can get free range eggs from our hippy shop that are delicious with bright yolks.  I've rendered my own lard from local grass-raised pork that I sometimes cook with.  Olive oil is the go-to fat for our whole family in cooking and sauteeing.  I try to use grass-fed butter on the rare occasions that Monica gets any.  Finally, a frequent and popular snack is a few (10?) almonds or pecans.

So that's a basic run down of how we take care of Monica in the kitchen.  I hope this helps encourage anyone with a new diagnosis that there really is a TON that you can still eat!  Please comment with what you wish to know more about - how I do something, why I do something.

Toddler eating + LPLD = HELP!

Part 1: When mac and cheese is not an option

Feeding a toddler is hard enough.  When you can’t rely on delicious fatty standbys that it seems every kid loves (macaroni and cheese, hot dogs, chicken nuggets, and pizza come to mind), what’s a parent to do on those desperate days?!?

Max out on dips and sauces

Sometimes all it takes is a dip that she gets to carefully place on each and every bite.  Just be sure you ask where on the plate she wants it, or you might end up with a tantrum, right?!?  Some key dips that we always have on hand:

Ketchup
Maple syrup and/or honey
Barbecue sauce
Asian orange sauce (great on vegies!)

Sometimes I’ll mix up some nonfat yogurt with a little honey for a sweeter dip for fruit or breakfast.  Or add a little mustard to the honey and yogurt, for a honey mustard sauce.  And then steal some for myself.  Yum!

Eat the same thing – and set a good example yourself
Bad news: a lot of bad eating habits come from kids watching us parents.
Good news: correcting our own bad habits is good for us AND benefits our kids, LPLD or not!
Some bad habits that we’ve had to correct over the years:

• Avoiding unhealthy snacks between meals, and avoiding all snacks an hour or less before meals – if we are very hungry, choosing a piece of fruit, some air popped popcorn, or some carrot, celery, or bell pepper sticks is tough but worth it.  This helps address my own emotional eating, as well!
• Sitting down to eat meals – especially when I can SEE all the dirty dishes that need to be washed, and I finished my meal 30 minutes ago, it is SO HARD to stay seated while my kids finish up; but no one likes to eat alone, and it’s a great time for your child to talk with you about whatever is on their mind
• Eating my own vegetables and showing enjoyment – if the vegetables you are eating aren’t that great, maybe you need to find a new way of preparing them, for both your sake and your kids!  I’ve had luck with trying something new from my cookbooks, as well as using my friendly Google search engine to find ways to cook the vegetables I have on hand in a way that other people in the internet have enjoyed, too.  I didn’t know I was overcooking my asparagus – when it’s still crisp, it’s so much more enjoyable, and then a little broth and lemon juice make it just fabulous!

This kid needs energy to stay active!

What bad habits have you broken (or do you need to break, ha!) for your kids, and then benefitted from yourself, too?

What is LPLD?

What do you tell your friends?  Family?  New teacher at school?  Restaurant server?

Here's a run down of my basic responses:

30 second answer – for waiters, ice cream scoopers, the mom giving me a funny look when she overhears me telling my daughter that, no, she can’t have the cheese everyone else is having for snack – but I’m peeling this delicious orange for her!

My daughter has a sort of allergy to fat – she can eat very small amounts of it, but any more than that will make her very sick and put her in the hospital.  So it's important to know what she eats.

Short answer – for the slightly more than casual acquaintance

Monica has a rare disease, one in a million chance of getting it, where she is missing an enzyme that supposed to be in every tissue of her body that lets her body use fat for energy.  So instead, the fat builds up in her blood and can make her pancreas very sick and put her in the hospital.  This hasn't happened yet, but we are very careful that she eats no more than about 10 grams of fat per day.

Teachers and parent friends - here’s the actual letter we gave to Monica’s teacher this year, both for her edification and to pass out to other parents in class.  So far, we’ve gotten nothing but positive feedback.  I know I sometimes feel like a burden, unnecessarily complicating people’s lives by asking them to provide foods that my daughter can eat, but I am constantly surprised by how much people DO want to help even a single little girl to feel included!

Feel free to copy this and use it yourself!

A Letter to Monica

Monica was a toddler when she was diagnosed, but first we went through multiple doctors who thought she had cancer. It was a difficult few months, but life is back to being wonderful as a family again.

Impeccable fashion, around the time of her diagnosis

Dear Monica,

At your 2-year-old well child check with Dr Z, you looked healthy but he was concerned that you weren’t saying 2-word phrases yet, and recommended speech therapy. I wanted to check on whether you were getting enough iron and asked for a CBC to check for anemia, and to see if you had a gluten allergy that was giving you a hard time gaining weight. After we had your blood drawn, I received a phone call from the lab; they told me some of the blood cells had looked funny and we needed to bring you in for a leukemia/lymphoma panel. I was horrified. Dr Z was out, so I rushed to Dr C sobbing; he called the lab and verified what was going on, berating the lab tech for calling your mother instead of your doctor with the information. The lab stayed open late for us to bring you in for another draw, which you were very unhappy about, and your dad and I spent the evening alternating between caring for you and crying on the phone to your grandparents. We were so scared that you had cancer. Dr C called that night with the news that you didn’t have leukemia or lymphoma, but that your blood was so full of fats that the lab had trouble working with it. Your triglycerides were 2700, when they should be around 100, maximum. He had no idea what could be wrong, but he promised to do some research. Your father and I had a tough time sleeping, even with such good news, worried as we were about what was going on.

Dr C had looked into many options for your diagnosis, but none fit perfectly; you were otherwise so healthy! He decided to send us to a variety of specialists, to see what ideas they had. First we went to Dr O, a pediatric cardiologist; he had never seen a triglyceride level so high, and actually laughed at his own confusion, which was a little comforting and a little disconcerting. He did a complete physical exam and ultrasound of your heart (echocardiogram), and couldn’t find anything out of the ordinary. He commented on your diaper rash, and we agreed that it was weird, you’d had it for a few months and it wasn’t responding to anything, even some strong antibiotic ointment we’d been using since seeing Dr Z. Dr O ordered a few more labs, especially a recheck of your cholesterol levels, hoping that it was a lab error and that you were completely healthy. Your triglycerides were 250 this time which confused everyone; it was still high, but not nearly in the thousands; which lab was the correct lab?

Folk music star (with pink blood)

Next we saw a hematologist/oncologist, Dr A. I was very nervous about seeing a cancer doctor. On his exam, he felt that you had an enlarged liver and spleen, and I could feel it, too. He was also confident that your diaper rash had something to do with your illness. He was worried this could be another, more rare and more serious type of cancer, and ordered labs to that effect, but was also confused because you should be so sick as to be in the hospital at this point if you had those cancers. That was reassuring that you didn’t have them, but anytime your child is being tested for cancer is a terrifying time. We talked about what we would do if you needed a bone marrow biopsy, what it would be like. Dr A drew your blood again right in the office, and just looking at its pinkish, creamy color, he was sure that your triglycerides would be in the thousands and that the 250 level was in error (and yep, it was 2700). He made an appointment for us to see him again as well as a geneticist who only came into town a few days every month, Dr L. Dr A saw how nervous we were about finding out if you had cancer and reassured us that he would personally call us as soon as he had an answer.

That night was the worst we had had so far. All I could think of was what I would do if you had cancer; how I would drop out of school for a year to care for you and dad. Wondering whether I would ever want to go back to my career again. Trying desperately to love you even more, just in case this was one of the last few days I would have with you on earth. But also finding myself pulling away from loving you, since part of me was so very afraid of how much it would hurt if you died. I couldn’t sleep well, and woke early with Dad to just sit in the guest room and hug and cry and talk about our fears together. Dr A called soon that morning to tell us that the preliminary test looked negative for cancer; cancer and inflammatory markers were all very low. A few days later he called again to reassure us that you did not have those cancers. We were so relieved, but also so confused.

Shrinking violet; she put up with so many doctors appointments!

In the meantime, we saw a speech therapist for you; after a few appointments, she decided that although you were a little behind, you weren’t behind enough to need her care. You were adding words and phrases to your vocabulary quickly, and she had no worries that you would catch up easily. What a relief!

Next we met with Dr L on July 31, 2012, a geneticist with an Italian accent. He listened to your story carefully, and then told us his diagnosis: familial lipoprotein lipase deficiency. He told us the only real sure way to diagnose this was only done in Germany, as far as we knew, but since the only cure was to cut the fat in your diet to almost nothing, we should try it and see if it helped. We had lots of questions for him and he was a very kind man. It was a relief to talk to him, but also scary to hear of what your life would be like from now on: less than 10 g of fat per day, threats of pancreatitis if you ate too much fat and pancreatitis’ life-threatening potential. It was nice to finally have a name for what was causing your high triglycerides, enlarged liver and spleen, and diaper rash (xanthomas or cholesterol deposits in your skin), but the diagnosis meant big changes for the rest of your life. It was so much better than cancer, but it was still hard to be grateful. He felt your symptoms would resolve and your appetite would greatly improve if we could just get your triglycerides to less than 1000.

Good luck with that sand, Dad

Next we met with a gastroenterologist, just to make sure we were covering all aspects of what you could have. He disagreed with Dr L and dismissed our protests of how well the diagnosis fit; he had another disease, a congenital deformation of your bile ducts, that he felt was the cause, and he wanted a liver ultrasound to verify it. Since we wanted to make sure your liver was OK, anyway, and it was a very non-invasive test, we agreed. Mom lay with you on the bed while they did an ultrasound of your belly, while Dad danced around and did silly things to keep you happy. Thank God, your liver and bile ducts were perfectly normal!

In the meantime, we started your new diet gradually. Up until now, we pushed fats whenever we could to help you gain weight, and you drank whole milk all night. We started with the milk, each week slowly putting in more of a lower fat milk into your bottles, working from whole to 2% to 1% and finally skim. You never seemed to notice or mind. Hurray! We started watching what meats and desserts you ate, cutting out the chocolate chips that you had always loved so much. After a month on this diet, we rechecked your blood. The results were amazing: triglycerides of 529! We were overjoyed.

At our next appointment with Dr L, I just handed a paper with your lab results over, and relished watching his face as he slowly got to the good news: his eyebrows SHOT up. He was just as amazed and excited as we were. We talked about the next steps: adjusting your diet to keep you healthy, pushing iron until your levels were normal, getting in vitamins every day. But mostly we were all relieved and amazed at how quickly your body was recovering from all this with the proper (difficult) diet. We talked more about where this had come from; your father and I both had to have the rare recessive gene, but as far as we could tell, no one in our ancestors had ever had it. Our children all have a 1 in 4 chance of having the disease, and a 50% chance of carrying the recessive gene like we do. Only one in a million people have this disease. But we already knew you were one in a million!

Your dad and I had a few months of real difficulty with your diagnosis. Your dad was very angry at God for doing this to you. I was mostly sad, and kept thinking of all the foods that I love that I could never share with you, could never be part of your childhood. We did our best to find other exciting foods for you; chocolate syrup, meringue cookies, all the lollipops and sodas you wanted. Food allergies were becoming more and more common, and my friends reassured me that as you grew up, this would be just like having an allergy, and your peers wouldn’t ostracize you for it. You would not be an outcast for this diagnosis. Hearing this gives me hope that this won’t be such a burden for you to bear. One of the greatest fears of being a parent is the suffering that we know our children will inevitably have to face; we want to put off the pain of life for you as long as possible. But with this diagnosis, we have to not only have your blood drawn regularly, but have you fast beforehand, which is hard to explain to a toddler. This is a great difficulty, for you more even than for us. But the greater the difficulty, the more God can do with it. We are excited to see what goods God will bring you and the world from this illness. We love you very much.

Mom

Monica meeting her new sister for the first time, months after Monica's diagnosis