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!!

Huevos Rancheros!

We went camping over the weekend (just plop camping, out of our car, still fun!) for a night, and this is what we had for breakfast.  So good! Monica devoured hers!

Can't get it in her mouth fast enough!

Ingredients:

Dash olive oil

Minced red onion

1 tablespoon sugar

Dash salt

Dash pepper

Dash garlic powder

Canned chopped tomatoes

Canned fat free refried beans OR canned black beans (or both!)

Corn tortillas (or other fat free tortilla of your choice)

Fat free cheddar cheese

Egg white OR egg beaters OR whole egg (5 g of fat per egg)

Optional: Diced avocado, fat free sour cream, minced fresh cilantro, jarred sliced pickled jalepeno

Heat olive oil over medium heat in a saucepan until hot; add onion, sugar, salt, pepper, and garlic powder.  Sautee until soft.  Add one can chopped tomatoes.  Cook until heated through.  Set aside in separate bowl.  Use hot greased pan to cook eggs to your liking (over easy, scrambled, whatever).

Assemble by smearing beans over tortilla, topping with the egg, and then tomatoes, cheese, and whatever optional toppings you like!

Our family doesn't even both to use forks.  Scoop it up with both hands and prepare to make a (delicious) mess!

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

Bunny Bread!

I wasn't planning on posting this, but my mom liked it a lot over Easter, so maybe you will, too!  It's a fun breakfast bread that we finished every scrap of this year.

Not perfect, but the girls thought it was sufficiently bunny-like

In your breadmaker, combine 4 cups whole wheat flour, 1/4 cup honey, 2 tablespoon yogurt, 3 eggs (or just egg whites), 2 teaspoons grated lemon peel, and 1/4 cup apple sauce.  Start on the 'dough' cycle to mix it well.  Turn off breadmaker once mixed, place 1/4 cup whole wheat flour on top of mixture, with 1 envelope yeast and 2 teaspoons of salt on top of the dry flour.  Allow to sit for 12-24 hours before running the 'dough' cycle fully.

Add 1/2 cup raisins and 1/2 cup dried cherries to the dough as you knead the dough until smooth and elastic.  Placed in a greased bowl, turning once to grease the top.  Cover and let rise for 1 hr or until doubled.

Shape into a bunny; cut off 2/3 of the dough and form it into an egg-shaped ball.  Place onto your baking sheet.  Cut the remaining dough in half, form one into a teardrop shape.  This will be the bunny head and ears.  Roll and pull the thin end longer, then cut the thin end down the middle to be the two ears, attached to the head.  On the narrow part of the egg-shaped body, press down on the edge of the dough to make an indentation where the head will rest and position it.

Cut 1/3 of the dough remaining, make a rope 6 inches long, make a u-shape and slide it until the body and head, leaving loose ends sticking out about 2 inches to make the front paws.

From the last of the remaining dough, make a rope 9 inches long, and make the ends fatter and the middle thinner.  Fold the rope in half and make a ball in the middle to be the tail.  Tuck the thin parts under the bunny body and leave the tail and ends of the back legs sticking out.

Cover your bunny and let it rise about 30 min.  If desired, then use scissors to form rabbit toes, slits for eyes, maybe tiny cuts for eyelashes.  Pinch the nose into place.

Bake at 350 for 40 min.

Serve with bunny salad (made with canned pear halves, cloves for eyes, marshmallows, and a maraschino cherry):

Cinnamon Rolls for Easter!

I have a new source of super low fat recipes!  Check it out!

The Goode Life is written by a fellow military mom, and her toddler has VLCAD (Very long-chain acyl-CoA dehydrogenase) deficiency, which sounds rougher than LPLD in some ways (I hope she writes up his diagnosis story some day, but it will be a hard  and emotional thing for her to put into words, I think).  Anyway, judging from the recipes she has on her blog, she has put a lot of effort into cooking beautiful and delicious food, even though her child is only a toddler!  I admit, sometimes I don't put all that much effort into trying new recipes for my girls, since I figure they are so young.  They won't miss cinnamon rolls since they don't remember them, right?  But she inspired me to try her recipe for Easter, and I'm so glad I did!

I followed her recipe posted here but since I like to soak my grains and use my bread maker, I combined the milk, apple sauce, flour, egg whites, and sugar and combined them in the bread machine bowl with 2 Tablespoons of non fat yogurt.  I put 1/4 cup white flour on top, and put the yeast and salt on top of the dry flour.  I let the whole thing sit in the breadmaker overnight, with the maker set to automatically finish the 'dough' cycle by the time I would be up for Easter morning.  That morning, I took the finished bread dough out and ended up having to mix another whole cup of white flour in to make a good doughy texture, and then placed it in a bowl greased with a little coconut oil like she recommends, to rise for an hour in a warm oven, covered with a damp, clean towel.  I used a pastry brush to paint the melted coconut oil onto the bowl, to keep it to a minimum.


I followed the rest of her directions for the inside filling and baking and the frosting, and topped them all with raisins (which were carefully picked off and avoided anyway, oh well.

Both my girls loved them!


Happy Easter!!!

Roasted Bell Peppers of Awesomeness

My latest fat free foot obsession is roasted bell peppers.  You can do other peppers, too, and the roasting process gives them a flavor that is just fantastic.  My LPLD girls just can't quite handle that (or any) level of spice (yet - I hope!).  I've always known they were tastey, but couldn't find an easy enough way to roast them to be able to incorporate them into every day life.  But now I've found one!  We had them on sandwiches last weekend and could have gotten by without lunchmeat, the peppers were so good.  I even but them on the fajitas we had last night, and Monica didn't even notice that she didn't have avocado on hers! (She had a high fat weekend, so we need to take a few days of low low low fattiness).  So, here's what works so well for us:

Stick as many bell peppers as will fit (or just a few, but why not mass produce these delicious things?!?) onto a cookie sheet and stick them in an oven preheated to 375 degrees.  Cook for 20 minutes.

Then rotate each one 180 degrees (flip them over) with some tongs.  Cook for another 20 minutes.

Dump them unceremoniously from the cookie sheet onto your stove top (if you're like me, though a plate would do fine too), herd them together with your tongs, and stick a cake dome on top of them.  Or a bowl.  Or anything that will trap the steam (and save your money instead of wrapping them in foil for that one time use).  Let them sit until they are cool.

We ate all the peppers... but these apples represent how to let the peppers steam and cool in a cake dome.  Or bowl.

Using gloves for hot peppers, use your hands to peel off the roasted skin, the stems, and the seeds out from the insides.

Eat that fleshy goodness!!  On a sandwich, with eggs, in crepes, whatever you would consider using plain old peppers in!

Rice Pudding

I have yet to find a way to make good chocolate or vanilla pudding fat free.  For now I rely on the little skim milk cups of pudding I can sometimes find in the grocery store.  But this morning I tried rice pudding for breakfast, and I thought it was fantastic.  I bet the girls would have eaten more of it if I had added cocoa powder, so I'll keep that in mind for fat free pudding in the future.  We made it with leftover brown rice, so it was extra healthy!  Yay fiber!

The recipe is adapted from one of my favorite cookbooks. It's not all low fat, but every recipe is perfected to full flavor (so making it fat free is generally still very tastey!).  (Don't tell, but this recipe technically was from the 'dessert' section... but in my book, all good breakfasts would also make great desserts...)

100% delicious

Cook a cup of rice according to the directions of the package.  We prefer brown rice for added nutrient density.  OR use 2 cups of whatever leftover rice is in the fridge and doesn't smell funny!

Put 4 cups fat free milk and 1/2 cup sugar in a medium pot, bring to a simmer, Add the rice and cook on a slow simmer, uncovered and stirring frequently (though I neglected it horribly and it still didn't burn! score!), until the mixture is thick (45 minutes ish).  Remove from heat and add a teaspoon of vanilla.  Serve warm or refrigerate and serve cold.

Breakfast this morning!

Flavor options:

• plain old vanilla
• add grated orange zest while it's cooking, maybe with a 2-3 almonds, chopped, on top
• add cinnamon, nutmeg, and 1/2 cup dried fruit at the end with the vanilla
• for a more Indian flavor (Yum!) add 1/2 teaspoon cardamom with the vanilla and sprinkle 1/3 cup toasted chopping pistachios on top of each bowl (if your fat intake can take it... let's see, 1/3 cup for the whole batch, it's supposed to serve 6 people, so slightly less than a tablespoon per person... 18 grams of fat in 1/3 cup of chopped pistachios, so... 3 grams of fat per tablespoon! not too bad!)
• unsweetened baking cocoa added with the vanilla would be great, too!  I'd estimate 1/3 cup for the whole batch would be about right, but add more for a darker chocolate flavor (another secret of our family is our oatmeal is often chocolate flavored for breakfast, using this same trick...)