Friday, November 25, 2016

Travelling with LPLD + PARIS

A city famous for it's amazing food, but it's all loaded with butter!  What do you do with LPLD, stay healthy, and still feel like you are on vacation?

Carousels next the the Eiffel Tower are always awesome
It's hard, but it's good to remember that travel and vacation are about more than food.  Walking along the Seine, lingering in the Louvre, admiring the Eiffel Tower - that is what Paris is all about, and none require putting your pancreas at risk!  Snacking on LPLD friendly snacks while being a tourist is essential, so you don't find yourself starving and desperate, with no safe foods in sight.  Apples, baggies of fresh popcorn, and some varieties of high-fiber granola bars (carefully picked out at the grocery store after reviewing nutrition facts in detail for those grams of fat!) were our key snacks while in Paris.  We always had them on hand and were quick to pull them out.

Proof we were there!
But at some point you find a restaurant you want to eat at, you're not starving, but something warm to eat and a place to sit for a while would really hit the spot!  Take, for example, Le Quasimodo Notre-Dame, a restaurant that my family ate at while going to the famous cathedral.  Yelp has some good photos of their food and menu.

So, what did we do for Monica and Teresa?  What could anyone with LPLD eat here, even if they couldn't speak French well in order to adequately describe what LPLD is??

First of all, we lucked out that the menu had English translations.  When you have LPLD, you really can't just pick a random food on the menu and hope for the best, as me and my husband sometimes do in other countries!

On this menu, many of the salads would be all right, asking for them to hold the dressing and the fromage (cheese) and choosing to dip in just a balsamic vinegar.  The ham or mushrooms omelettes could work, keeping in mind that ham is generally pretty lean, and each eggs has about 5 g of fat.  You could have the hamburger, sirloin steak, ham, or roast chicken and ask for French beans instead of French fries; avoid the bun on the burger to be extra careful depending on your recent fat intake.  Bolognese sauce usually has meat but not generally added fats, so the spaghetti might be a good choice.  Crepes with sugar and lemon are one of our favorite treats, and sugar and lemon is THE classic French way to enjoy them!  A pancake with jam or sugar would be great, too.  They even have black current and lemon sorbets for dessert, perfect!

In summary, Paris is a hard town with LPLD.  It's easy to get bogged down in all the delicious options that are available to everyone but you.  There's some interesting research these days showing that people are the 'best' at self control are really just good at avoiding situations where they know they will be tempted!  For Monica, we do our best to give her at least 3 options that she CAN have at restaurants, and not even discuss what else she couldn't have.  We hope she can practice this as an adult, too, scanning through a menu and not even letting anything register in her brain that is just not an option.  At bakeries, it was a lot of (fresh fluffy delicious) buns.  An adult might pair an authentic French cup of coffee!  In restaurants it was lemon sugar crepes, a bunless hamburger and white rice...  She even had a tiny bite of our (buttery) escargot, just to try it!

A question for you readers, though, since Monica is only 6: do you drink alcohol with LPLD?  How do you avoid over-indulging?  Have you given yourself pancreatitis just from drinking too much?  Do you find that you can only drink very minimally?

Tuesday, November 22, 2016

Changes in Identity

When did you stop being 'you' and when did you start being 'you with LPLD?'  Or are you still just 'you,' your identity intact by itself, without your chronic disease really being part of you?

I've been married to my husband for 10 years now.  10 glorious years of rejoicing and suffering together.  But I remember thinking for the longest time how weird it was that my co-workers only knew me with my 'new' last name.  I felt that no one 'really' knew me unless that knew me by my maiden name.  My married last name still felt a little foreign and itchy, like a new wool sweater.  There were parts of my husband's family and last name that I didn't really want to be 'me.'  I liked my own family, and besides, my maiden name was a lot cooler than this boring one.

The other day I realized, though, that my married last name finally feels like 'me.'  My husband's family are my children's grandparents and aunts and uncles and cousins, and they finally feel just as essential to our little family as my own parents and brother and sister.  They all have their flaws, but I can't imagine life without them.  The people who know me best in the world finally could know me by my current last name!  This is embarrassing to admit, but I wonder if it's similar to adapting to a chronic disease.

At first, it feels like LPLD is an outside invader, that's not really who you are, it doesn't adequately match up to who you are deep down.  Deep down, you are a person who would love to eat ice cream and full fat cheese, and LPLD is just a facade that you have to wear to stay healthy.

Maybe it takes a decade, but is there a point where LPLD becomes important to your identity?  It's part of who you are.

It reminds me of how Catholics believe that Jesus Christ still has the holes in his hands and feet and side from being crucified, even in Heaven where there is no longer suffering or death.  He doesn't feel pain from them, but those wounds were recived in His greatest act, an act that redeemed suffering and death for all time.  LPLD is certainly not an easy thing to live with, but in some way, maybe you'll still have it in heaven.  Not in a way that hurts you or affects the way you 'live,' but as a badge of honor of how you suffered on Earth, and grew in courage, love for others, and love for your own body.  Even when it was hard.  I wonder if it becomes more than a burden, and eventually transforms you into more of the person you were meant to be.
Newlywed and certainly NOT used to my maiden name!

Wednesday, November 16, 2016

What's for Supper? (link-up) - Volume 3

What's for Supper? (link-up) - Volume 3


This recipe surprised my family by everyone liking it!  Surprisingly low fat and different than our normal food.  I think I'll hunt some clams or mussels down the next time we make it and add those, too...


Potluck at work

Thanksgiving dinner at work, I made apple crisp, double recipe.  It was from America's Test Kitchen and it didn't have any oats...  This seems right.  I made a fat free version for my daughters, in which I added non fat greek yogurt instead of the butter and it was good!



Burgers and green beans

Tonight had to be a fast dinner so that we could make it to see the Harlem Globetrotters perform on base.  Really neat!


Curry chicken salad

Served on rolls on the road.  A version with greek yogurt instead of mayonnaise works well, especially since you're tasting the spices more than the creaminess anyway.  I would want to add raisins next time, since I love raisins in chicken salad.  Funny story, we were supposed to be driving to Paris, but my military flight got stuck in Sicily so I had to drive out separately the next day... sorry, that wasn't funny, but in summary, military life is weird.


Restaurant in Paris

Monica and Teresa had a bunless hamburger and white rice, but had little bites of our butter-drenched escargot and also some of my duck gizzard that was on my salad.  Organs meats are full of fat, but also of fat-soluble vitamins, so I love to give my LPLD girls little bits sometimes.


Pasta with jarred sauce

Rather boring, sorry.

Pork loin, sautéed green beans, roasted bell peppers sliced on top

Really good pork loin, pre-seasoned from the commissary, that we left in the oven too long and it was a solid 20 degrees hotter than we intended it to be when we pulled it out.  But it was still amazingly tender!  Well, while it was warm it was tender, my husband accurately pointed out that as soon as it cooled it got tough.  Luckily we were able to scarf down most of it right away.  Yum.  It was beautifully plated.  So beautifully that we didn't get a picture.  At all.  All week apparently.  Sigh.

But, another reminder of an awesome fat free treat:
Cotton candy bigger than your head

Monday, November 7, 2016

What's for Supper? (link-up) - Volume 2

What's for Supper? (link-up) - Volume 2

Fine other amazing meal ideas here.  Though most of our meals this week are straight from her blog posts!

Beef and cabbage stir fry

Halloween!  Better be healthy and fast and appealing for the girls to load up before celebrations.  It was Simcha's inspiration, from here

Cabbage is so tasty and cheap and surprisingly good for you!.

Spaghetti carbonara served with garlic roasted brussel sprouts
LPLD version
Carbonara version

All Saints Day!  Definitely a celebratory meal, again all from Simcha, and all great!  I don't think there's any good way to adapt spaghetti carbonara to be LPLD friendly, actually.  The girls had pasta with jar sauce, which is one of their favorites, with some Northwoods non fat cheese on top to guarantee consumption.

Frozen pierogies, sauerkraut, and caramelized butternut squash

All Souls Day!  We are Polish on both sides of the family, so pierogies it is!  I'm always surprised that those frozen pasta pockets with mashed potato deliciousness are as low fat as they are.

Grilled Steak Banh Mi sandwiches

Served on top of fresh buns from the local bakery, wow.  Really good.

Vegetable pizza

We make our pizza on homemade sourdough crusts when we haven't just moved across the world.  But we are still settling in, so we used some frozen grocery store crusts.  The girls always have pineapple and ham, we had roasted bell pepper and onions and artichoke hearts.

Huevos Rancheros for breakfast

Lunch and dinner out with friends at a German restaurant and at an arts and crafts festival.  At the restaurant, Monica had boiled ham served with a lot of pickled vegetables and some 'farm fresh bread' which was first served with butter all over it, and she cried when we had to send it back.  Sigh.  One of those days.  The bread was still good without butter, she LOVES pickled vegetables, and it turns out that boiled ham... isn't her favorite.  At the festival, she had apple cider and a quarter of a waffle with powdered sugar, and some leftovers when we all got home.

Is it cruel to dress her up as something she will never (well rarely) get to eat?  But she's so cute!

Chicken negimaki with snow peas

Meh. Not as amazing as I had hoped. Pretty though!  Well, when it's in focus...

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.

Monday, October 31, 2016

What's for Supper? (link-up) - Volume 1

A favorite blogger of mine, Simcha Fisher, hosts a link-up every week where she posts what she had for dinner every night that week, for inspiration for other families.  Maybe this could help LPLD moms out there, too!  I have decided to link with hers, mostly to help encourage me to actually get my post up once in a while.

So, what did we eat last week?

frozen tuna filets with a side of roast butternut squash with fennel

Every time we move, it's an effort to find fish that we like.  We haven't yet found a source of fresh fish yet in Germany, but these were decent frozen ones!  The butternut squash is one of our favorite vegetables of all time.  It's basically this but without the apple... or the honey...  Hmm.  Well.  I think my mother-in-law made it up and it's the only thing I know to do with fennel.

St Daria's feast day - sushi in Trier!

My confirmation saint is a little-known saint, St Daria, and we love to celebrate our feast days in our family.  So!  Sushi it was!  It is amazing how much sushi our girls can put away.  The waitress doubted our choice of two full california rolls for them, but we showed her!  California rolls are just white rice, sea weed wrapping, cucumber, avocado, and (fake) crab.  So if you have the space in your fat intake for a little avocado, it's delicious!

Tamales (from a work fundraiser) and ratatouille

Monica had half of a tamale and mostly some leftover noodles with pasta sauce, one of her favorite foods.  And ratatouille because I definitely consider tomatoes a vegetable, so load them on that plate!  I don't think tamales can ever be LPLD friendly.  Sigh.  But ratatoulli is a family favorite - basically sauteed tomatoes, eggplant, and basil. It's what made me realize I liked eggplant and I highly recommend trying it!  Add some chicken or (fat free) mozzarella the first time you make it to be sure you like it :)

Beef and mushroom stir fry from here

Well... loosely adapted.  Served over rice for the girls instead of noodles and without capsicum and just broccoli instead of broccolini.  And no kecap manis.  Just soy sauce.  It was good!

Pasta Primavera

My husband made the recipe up. He sauteed red peppers, onion, cherry tomatoes, probably some tomato paste and spices, and we served it over rotini.

Chicken and sausage gumbo from Better Homes and Gardens

It can be tough finding smoked sausage that's low enough fat for LPLD. We use this:
Smoked turkey sausage

5 g of fat for 2 oz, or 1/7 of the package

I add twice the amount of okra that it calls for, since we all like okra, and it's both delicious and low fat.

We'll be having a lot of pictures of whatever was leftover from dinner until I can remember to take pictures on the day of the meal.... For now, behold my lunch this week!

Pork shoulder, roasted and topped with roasted bell pepper and gouda/Northwoods  Garden Vegetable cheese

We should have had another vegetable. But we forgot.

See you next week!  I hope!

Wednesday, October 26, 2016

An LPLD Meal for Baby Fingers...

... and adult forks!

Teresa is now 17 months old and seems to have decided that if she can't keep up with her big sisters intellectually or with gross motor skills, she will keep up with them in weight.  We have never had a toddler eat this easily and readily!  I can't remember Monica or Mary every asking for food before they could talk, we always had to offer it and then they would daintily take a bite... and then meticulously put every other morsel into their glass of water and stir it contemplatively with their spoon.

Not to say Teresa is getting overweight or chunky, I don't think my children will ever have that problem when they are little, especially with LPLD!  But here is a recipe that is healthy, LPLD-friendly, and that Teresa ADORES since it has lot of chunks that are easy for her little fingers to grab and stuff in her mouth.  Mom and Dad have to follow with a spoon to get the last of it into her mouth, but at least there's a good degree of independent eating, which is nice for when Teresa is screaming in starvation but dinner isn't technically done yet.

As a meatless meal, it's also great for Fridays and for saving some money.  Dried beans make it even cheaper, if you can remember to get them soaking and cooking with time to spare!

I usually tweak my favorite recipes and type them up directly on this blog, but I really have nothing to change for this fabulous recipe:

Vegie Bean Burritos from Kitchen Stewardship

For Teresa, we'll either just feed her the filling, or if there's leftovers where the filling and the sauce is mixed, we serve her that just as easily.

For adults (and bigger kids), we serve it in our favorite low- or non-fat tortilla, plus or minus some fat free cheese on top.

Guten appetit!

Saturday, October 1, 2016

German pancakes!

After all, it is only appropriate to make German pancakes when living in Germany!

I'm excited to post this recipe because it's not only low fat and tastey, but also because it's a good example of how we make do with having some of the family with LPLD, and some not, and how to serve a little girl food that is super low fat, but also looks the same as what her sister is eating.  No one wants to feel left out!

The key to this recipe is having a large fry pan that can also go in the oven.  We use a cast iron skillet, and have burnt our hands more times than I'd like to admit after we've taken it out of the oven, since we're not used to the handle being hot!  I highly recommend putting a hot pad on the handle and leaving it there so you don't forget and try to pick it up!

I've adapted the recipe from one of my favorite cookbooks, America's Test Kitchen.

The basic (adapted) recipe:

1/4 tablespoon coconut oil
3 apples, cored and sliced thin
1/4 cup packed brown sugar
1/2 teaspoon cinnamon

1/2 cup whole wheat flour
1 tablespoon white sugar
2/3 cup skim milk
3 egg whites
1 teaspoon vanilla extract

Melt the coconut oil in the skillet on your stovetop over medium heat; add the apples, sugar, and cinnamon, stir frequently, until the apples are just a little brown and soft.

In the meantime, preheat your oven to 425 degrees F and combine the flour, sugar, milk, eggs, and vanilla; whisk until there are no lumps.

When the apples are cooked as above, pour the batter right onto the apples, starting around the edge first.  Bake about 18 minutes, or until the pancake is lightly browned.

Serve by flipping the whole thing out onto a big plate, and dust it lightly with powdered sugar for extra specialness.

Monica approved!

So that recipe is fine if you only have folks with LPLD to serve, but in our family, our other daughter NEEDS fat in her diet, and I enjoy a fatty breakfast sometimes, too.  To meet everyone's needs, this is what I've had success with, and it's not all that much extra work!  Just use a BIG skillet!

Super Adapted Recipe!

1/2 tablespoon coconut oil
5 apples, cored and sliced thin
1/2 cup packed brown sugar
1 teaspoon cinnamon

1/2 cup whole wheat flour
1 tablespoon white sugar
2/3 cup skim milk
3 egg whites
1 teaspoon vanilla extract

1/2 cup whole wheat flour
1 tablespoon white sugar
2/3 cup whole milk
2 eggs
1 teaspoon vanilla extract

Melt the coconut oil in the skillet on your stovetop over medium heat; add the apples, sugar, and cinnamon, stir frequently, until the apples are just a little brown and soft. 

In the meantime, preheat your oven to 425 degrees and make the two varieties of pancake, fat free and fat full; mix in separate bowls the flour, sugar, milk, eggs, and vanilla; whisk until there are no lumps.

When the apples are cooked as above, pour the batter right onto the apples, starting around the edge first.  To separate the fat free and fat full, I will either add a little food coloring to one (the girls like pink food!) or just make the pan half and half, usually the fat free side is next to the handle of the pan.  Bake about 18 minutes, or until the pancake is lightly browned.

Serve by flipping the whole thing out onto a big plate, and dust it lightly with powdered sugar for extra specialness.  I'll cut it right away to separate the fat free and fat full sides while I remember which is which.

I like to serve with maple syrup, but it's great on it's own, too.

Friday, September 23, 2016

Honey Mustard

It's embarrassing how long I took to figure this out, but you know what's really tastey, easy to make, AND fat free?  Honey mixed with mustard.

Recently Monica has had it on fish, toast, hamburgers.  They were all 100% Monica-approved.

The recipe?  Half honey and half dijon mustard.

German pretzels? AWESOME with honey mustard
A short post, but I highly recommend trying it!  A nice mix of sweet and savory!

Friday, September 9, 2016

This transatlantic move was made possible by soft pretzels and sorbet

Guten tag!

We live in Germany now!

So sorry for the delay in blog posts, but moving with three kids across an ocean has been quite an undertaking.  I plan to go back to weekly posts in the near future.

I wish that I had taken more pictures of how we survived the move while maintaining an LPLD diet for two little girls that get cranky when they are hungry.  A big part of it has been a big supply of Trader Joe's Caramel Popcorn which is nonfat and delicious.  However, when that gets stale or they want some REAL food, it is certainly convenient that even the smallest villages in Germany have their own bakery (backerei!), and each bakery has not only the fat-loaded pastries that I enjoy when I am stressed, but also fresh baked, soft pretzels!  The whole family loves these and I can rely on them to be super low fat!

Monica has also discovered that she ADORES lemon sorbet from our frequent gelato shop breaks.  I agree that it is delicious!

Praise God that every gelato shop seems to have a few sorbet options!

Friday, July 29, 2016

Growth Charts!

I know from both sides, both as the doctor and as the parent, just how important that line graph is at every well baby appointment.  Parents clap themselves on the back for their 90th percentile kid, or descend into despair at their 15th percentile child.  But what does that growth chart actually mean?  Is 90th better than 15th?

First of all, what growth chart is your doctor using?  A disturbing number of docs use CDC growth charts, in part because the electronic medical record might only have the CDC growth charts convienient for them to plug numbers into.  However, as the CDC web sites itself states: "In the United States, the WHO growth standard charts are recommended to use with both breastfed and formula fed infants and children from birth to 2 years of age (CDC, 2010)."  I'm not sure why the CDC growth charts still even exist.  They were created based on a fairly small number of very similar children (white, formula fed, living  in one region in the US), and tend to make especially breastfeed babies look like they are not growing well.  How stressful for parents!

So before you start stressing about how your baby is growing, make sure that the tool you are using (the growth chart) is accurate!  I like to keep track of my children's growth curves on my own app, since I'm obsessive like that.  I use Growth on ipad.  For doctors who don't know about the CDC to WHO growth chart switch (I know, how is it possible that a doc doesn't know that???  sigh), this app has a nice function where I can flip between WHO and CDC growth charts to do a little education for the doc.  "See how my baby looks like she's dying on one chart, but fine on the other?  Yea, guess which one is actually accurate..."

Now that we are sure we are looking at accurate information, what do the percentile lines mean?  Those lines follow the average growth curves of average babies.  So the most babies follow somewhere around the 50th percentile line.  An equal number of babies should follow the 75th percentile line and the 25th percentile lines, and they are still normal growth patterns; those babies just have more chubbiness or thinness, tallness or shortness, in their genes for that period of life.  The numbers don't seem to dictate whether the child will be tall or short, and especially not overweight or thin, as adults.  The numbers are mostly used just to make sure a child 'picks a line and sticks with it.'  Basically, it doesn't matter which percentile line your kiddo is on (so stop gloating, you 90th percentilers!), as long as they stay roughly with that line!  Deviating sharply up or down is an indication that something isn't right with how your child is growing, and should look into it more.

So will LPLD affect how your child grows?  Hopefully not.  Following a child with LPLD's growth percentile line can definitely help reassure you that, despite not getting much fat in their diet, they are still growing appropriately.

Which is nice to hear/read, but hard to take to heart as a parent when you are so worried about your little one.

But in case it helps reassure you, here are my children's weight growth charts.  Mostly this is pertinent to compare my kids with LPLD (Teresa and Monica) vs Mary, who got to eat as a baby (and continues to eat to this day) all the ice cream, cheese, and avocado she could want!

Teresa's age vs weight

Mary's age vs weight (no LPLD)

Monica's age vs weight
All my children are on the lower side of normal, but all have smooth lines.  Reassuring!

Even though I didn't know it, I just have rather small children it seems!  Nothing to do with LPLD.  There was no extreme dip when Monica was diagnosed at around 18 months to two years and we changed her diet drastically.  There was no dip when Teresa was diagnosed at 6 months and I switched her to skim breastmilk.

In summary, trust your parental instincts, as well as your child's ability to tell you when they are full.  It's hard not to worry about whether your LPLD child is getting enough to eat, I am right there with you.  I might well be pulling up this post in the future when I am anxious myself!

Tuesday, July 12, 2016

Why I Am Still Christian (in the face of chronic disease)

I've noticed a trend in the stories of adults with LPLD; they often mention that, during the trials of childhood, in which they struggled to fit in with their peers when they couldn't share a simple meal with the other children, their mother fell away from her religion.  I can certainly relate.  Particularly in the time of diagnosis, while Monica was being tested for all sorts of awful cancers, and we were just waiting, waiting, waiting for the news, I remember the quiet times with my husband.  These were times that we usually would have been sharing every important thought of our hearts and minds that had come up lately, fleshing them out with each other, enjoying each others presence.  These were the early mornings and evenings after the kids were in bed, when it was just us.  Instead of talking together, or even just quietly holding hands in peace, there was awful silence and distance while we were waiting for the diagnosis.  The silence was filled with heartbreak and fear and tears that we didn't feel like crying anymore.  It was the silence of despair.

I suppose despair is easier if shared.  Mostly it's easier to recognize in yourself when you see it in your loved one, first.  But it's still awful and hard to dig yourself out of.  Monica didn't end up with any of those cancers, but she was instead diagnosed with something we had never heard of or imagined, LPLD.  In the first weeks of those diagnosis, it was hard not to wonder if she might have been better off with one of those cancers, or just dead, rather than a whole life of daily suffering and trials, of choosing between her health and a good life.

Watermelon! Yet another beautiful (fat free) part of life
Of course I have come to realize that there is far more to a good life than fatty food.  Sometimes my heart prickles with grief over my daughters not experiencing the 'richness' that 'rich food' can lend to a meal.  But in the face of his despair and grief, how can I still believe in a God worth having around, let alone a Savior who loves my children even more than I do?

There are lots of good answers to why bad things happen to good people.  All of the answers are best in different circumstances of life.  The answer that has most helped me to cope with Monica's diagnosis is that good things come out of adversity, and the trust that Monica's character will be shaped in a miraculous way due to the difficulties of LPLD.

Leading these kids to holiness is a big job, but I love trying!
I consider building character and virtue to be one of the central purposes of life on earth.  I have no doubt that LPLD will help me to teach my daughters self control and self sacrifice.  It makes me think of a dear friend that I went to college with who suffers from Crohn's disease.  In the midst of episodes of chronic abdominal pains, difficulty choosing what to eat, and socially embarrassing bathroom trips, she told me once that if she had had the choice to give this disease to a friend, like me, or to suffer with it her whole life herself, she would have chosen it for herself.  I pray that LPLD is, similarly, a big step in leading my daughters to be the best versions of themselves, willing to undergo suffering for the sake of others.  Suffering that starts with LPLD, which they did not get to choose, but that they eventually accept, and move on to accept additional suffering so that others may have relief, perhaps by building a homeless person a house, forgoing a meal and giving it to the hungry, or giving up years of life in America to teach in a less comfortable country.

Ready to take on the world.  Photo credit to Sharon

In summary, yes, LPLD sucks.  But it allows ones character and tolerance for sacrifice to grow.  I trust that God knows exactly what he's doing, even in this, and that my two LPLD girls will be better people for their sufferings.

Wednesday, July 6, 2016

(Xanthomas) (shhhh)

Monica's persistent diaper rash, that didn't get better with any variety of over-the-counter or prescription diaper creams, was part of confirming her diagnosis.  They faded fairly quickly as we changed her diet from whole milk to skim milk, and she wasn't breastfeeding much at the time anyway.

Teresa has been different.

Teresa was diagnosed earlier, at six months, and even though we have actively changed what we would feed her from what we fed Mary, who doesn't have LPLD, her xanthomas have been worse.  The last two weeks have brought white bumps on her forehead, forearm, and leg.  It's impossible to know 100% that they are xanthomas without cutting one out and sending it to a lab, which I am not eager to do, but instead I get to be anxious over them without being sure.  Oh, anxiety.  That gut-twisting, tense feeling that never really leaves you throughout your day, and then wraps itself firmly around your heart when your thoughts return to its source, every time.  Anxiety sucks!

Some of the bumps looked a lot like bug bites at first, but then with time, instead of being red throughout, there became a broad white area in the middle.  Others started as small white bumps, rather like baby acne, and stayed that way.

I have to describe them because, even though I meant to take pictures for documentation and for this blog, I didn't.  Xanthomas feel like failure, like my baby is suffering, even in a little way, because I failed in her diet in some way.  The last thing I want to do is document my failure, even if it might be helpful for my future self or for others!

So please excuse the lack of xanthomas pictures.  The good news is, we have been extra diligent about what Teresa eats, and they have faded.  Instead she has a big scrape on her forehead and scab on her nose from a few falls onto concrete lately (why do they always land on the same spot after they've already got a bruise there?!?!?).  But at least that's just a sign of a moment of inattention, instead of giving in and slipping her just a tiny piece of chocolate or cookie.  Somehow that doesn't feel as irresponsible.

Her diaper area, on the other hand, continues to be bad.  We continue to have to use diaper creams every diaper change, which means we have to use disposable (but compostable, at least!) instead of the cloth diapers we prefer, so that she doesn't scream from the pain of any poop or pee.  Poor thing.

For other LPLD patients out there, tell me more about xanthomas - what do they feel like to you?  Do they hurt?

For other LPLD moms and dads - I feel for you!  Keep fighting that anxiety and guilt.  We are doing the best we can with a tough diagnosis.  My daughter has LPLD, but it doesn't have her!
How we feel about xanthomas.  Thanks to Sharon for the picture!

Tuesday, June 28, 2016

Chocolate banana pops!

I was pretty surprised how well these went over for dessert last night.  Two ingredients, easy to make, and when frozen they are excellent little popsicles to enjoy on a hot evening!

I'm a big fan of Kitchen Stewardship, and so used her idea, but instead of chocolate chips, we used chocolate syrup!  Yum!!
She had a whole banana for dessert!
\I used a plastic straw to make a cluster of 3 little holes through the banana slices (and then slurped the banana pieces in the straw out and made an exceptionally weird noise!), filled the holes with chocolate syrup, put toothpicks in their sides, and stuck them in the freezer.  The recipe above mentions they will freeze in 10 minutes - not so with chocolate syrup.  Ours didn't freeze well at all, but were still very tastey.  Next time I will freeze them overnight and see if I can't get that chocolate syrup more solid!

Monday, June 27, 2016

Fish tacos

This is a family favorite. So often we get fish  tacos from restaurants and are always disappointed when it's not as good as these!

Ahead of time, toss a chopped red or orange or yellow (a green will do in a pinch) bell pepper with about 1.5 cups chopped mango (fresh or frozen). Add some chopped jalepenos if you want some spice. My girls tolerate a little chopped red or green onion for the 'spice' and its still good like that.  Add some grated lime peel if you have some, a tablespoon lime juice, 1 tablespoon vinegar, and a dash of salt and pepper.  Mango salsa!

Make some coleslaw with half a chopped cabbage (we use a food processor) but we always have leftover! Proportions between mango salsa, slaw, and fish are still a work in process at our house. I hate having way too much of one! Anyway, toss it with some (3 tablespoons) fat free mayonnaise and 1 teaspoon freshly squeezed lime juice til its tastey.

Fish - whatever the store has that's good, we will usually use a cheaper white fish like tilapia, but when we feel fancy we will use a fatty and tender salmon, yum!  Cod or orange roughy are also quite good.

We usually get fillets with the skin on. Lay them, skin side down, on a cookie sheet, and dust with some salt, onion powder, cumin, and garlic powder. Broil in the oven for maybe 10 minutes, depending how thick the fillets are, or until flakey and to your desired level of cooked-ness.

If luck is with you, you can use a metal spatula to scoop up the fish, and get just the fish and not any skin. Or just trim off the skin that comes with it. Cut into bite size pieces and serve hot!

Hard or soft taco shells can all be good.

Saturday, June 11, 2016


Whole wheat pancakes were a staple of my childhood.  Perhaps it was her way of coping with her youngest childhood growing up, but my mom made pancakes for me every morning of high school. Usually with chocolate chips, since my childhood was rough like that.  My childhood home and my own home have two big things in common: we always seem to have some milk that's gone bad, and we always love pancakes!

Adapted from Better Homes and Gardens

1 cup whole wheat flour
1 tablespoon sugar
1 teaspoon baking powder
1/4 teaspoon baking soda
1/4 teaspoon salt
1 beaten egg
1 cup buttermilk or sour milk
1 tablespoon coconut oil

Combine dry ingredients in a large bowl (extra large if your children are going to be during the stirring.  It helps the flour to not 'escape' so much).  Add the egg and milk, use a whisk to combine.  Heat the biggest frying pan that you have (our perfect setting is just below 'medium') and when it's hot, add the oil.  When the oil is hot, pour the batter in!  My kids prefer smaller pancakes to larger ones.  When the bubbles that form in the cooking cakes pop, then they are ready to flip!

Serve with: jelly, non fat cream cheese, syrup, pureed fruit, fresh fruit, a few nuts

I also like to soak the flour overnight but that's a recipe for another day

This mornings topping options: (powdered) chocolate peanut butter, marmalade, and/or syrup

Monday, June 6, 2016

Powdered Peanut Butter!

It's official!  This stuff:

Is, indeed, just great stuff.
That bottle says it has 90% less fat than regular peanut butter.  I'm not sure how that works.  Do they really add that much oil to regular peanut butter?

Anyway, it's easy to use.  Usually my husband takes some time to adopt a new process in the kitchen.  He sees me do it a few times, he tastes it, tries it for himself... and considers if it's worth the hassle.

Not this.

Two spoonfuls of powder, mixed with one spoonful of water, mix it together, et voila!  Peanut butter than Monica can enjoy.  We finished our first jar in record speed.  It's full of calories and protein and flavor, but NOT fat!  Monica loves it!  She loves it on sandwiches.  She loves it on waffles.  She loves it on apples.  She LOVES it mixed with a little chocolate syrup. 

It's available from Amazon.  We got ours from Azure Standard.

And now I have to decide which is worse, the mess this little one makes breaking into the pantry, or the crying when I pry the Cheerios away from her...

Sunday, May 29, 2016

Last Minute Chicken Tacos

Our family spends most of our time preparing food or cleaning up from food.  Food is, when it comes to time spent working on it, the center of our lives, and I think that's the way it should be.  But everyone has times when they've just come home from a trip and don't have anything planned for dinner.  Or the day flew by without getting to do the advance steps in a recipe, so now the recipe just can't happen in time for the meal.  Or it's been a crumby time and everything feels like it's going wrong and the last thing you have effort for is to make another dumb meal!

Here is our go-to meal for those times.  It's tastey and easy and fast.  It was introduced to me by my sister-in-law, though honestly I don't know why I didn't think of it before!  I usually have everything else on hand and just run out to grab a chicken, lettuce, and avocado from the grocery store, and dinner is practically done.

Last Minute Chicken Tacos

One whole rotisserie chicken (one of those hot ones from the grocery store)
Jar of salsa
Head of lettuce
Can of black beans
Lime juice
Garlic Powder
Fat free cheese
Avocado (if your fat allowance can handle it)
Fat free tortillas
Fancy night! Beans and avocado in bowls!

First, set the chicken on a plate to cool while you do everything else.  Rinse and chop the lettuce.  Slice the avocado.  Pour the beans and salsa into serving bowls if you feel fancy (not likely on days like this!).  Then peel the skin off the chicken and peel the meat off the bones, breaking any particularly big chunks up.  Pour some lime juice in the bowl with the chicken chunks, sprinkle some cumin and garlic powder in, and use your hands to gently mix it (these kinds of chickens can easily disintegrate into gross chicken mush if you stir them too violently, I guess since they've been cooked so thoroughly; ask how I know!).  Taste and add more lime or spices if desired.  Then, dinner is ready!

Sauté the tortillas in olive oil if you want.  Otherwise, stack on the layers and enjoy!

Monday, May 23, 2016

The Dreaded Blood Draw...

I'm not sure who dreads our biannual blood draws more, Monica or us parents.  I thought it was bad to hear your baby cry as you hold her so tight, willing it to be over soon, and feeling so sorry that she is hurting, but young kids are even worse.  When your child can recognize the lab, based on the waiting room and white lab coats and the chairs, and can start being scared and screaming and panicking when you just walk in the vicinity, that's the worst.  Even if we talk it up beforehand with Monica, and she plans to be brave, sometimes it seems she just can't help but try to run away, which, if you ask me, is even more heart rending than a little baby's cries.
You wouldn't want to make me cry
I imagine every kid is different.  I learned pretty early on that shots and blood draws only hurt for a few seconds, and even then were more of a 'pinch' than real pain, and haven't struggled with them personally.  I religiously give blood, and although sometimes I turn away and don't look, and sometimes I use deep belly breathing to get through the anticipation of that poke, it's certainly not anything that gives me anxiety.  My husband on the other hand feels something viscerally wrong when he gives blood, and although sometimes he can meditate his way through the experience, more often the thought of blood leaving his body makes him queasy, if not unconscious on the floor.

I certainly pray that Monica will end up being more like me than him, especially so that as an adult, she can experiment with her diet and see what effects different foods have on her triglycerides.  It's a big interest of mine to discover what helps her to overcome her reaction to run when she sees that lab chair.  This is what we've tried so far:

Preparation - When you check in, make it clear that you are willing to wait in order to get the best 'peds stick' on shift that day.  A little anxious waiting in the waiting room is still SO much easier than multiple pokes into a little squirmy arm.  For afterwards, make sure you have some snacks (fasting is hard on little bodies!), an extra fun Band-Aid or two (sometimes they run out!) (or a regular band aid and a permanent marker to draw a smiley face, ha, been there!), a sticker, a temporary tattoo, whatever will distract your kid as fast as possible afterwards.  Monica hates the coban that they like to put on needle stick sites these days, so we don't even allow that to be put on her anymore.  I hold the cotton ball in place until she stops bleeding, and then we require a band-aid to hide the evidence.

Gifts - We had success with a set of dolls that Monica helped pick out, and she got to choose one doll with every blood draw.  She admitted that she's looking forward to her next set of labs, so that she can get the next doll in the set!  Though I'm sure the doll won't be that appealing when she's actually waiting for her name to be called, oh well.  You could even wrap up a present, and have the (one handed) opening of the gift be part of the distraction during the blood draw!

Is there anything more alluring, exciting, and distracting, than an unopened box?
Movies - Monica really likes to have an ipad or dvd player positioned just right, to block out what's going on to her arm in her field of vision.  It doesn't have to be much of an interesting show, just anything that she can look at!

Distraction - Basically anything that we can think of for a distraction is what we are working towards.  For Teresa we will wave a new toy, preferably a noisey and visually interesting one (and even better, a toy that the clinic provides so that it's brand new to her, too!), since she's too little to understand much of a movie or a wrapped gift.

Knowledge - I'm hoping that, as Monica matures, this will be the major incentive.  This last blood draw was the first one where we tried to teach her WHY we check her blood every 6 months, what kind of numbers (we talk on a scale of 1 to 10, with 10 being triglycerides of 1,0000, and our goal of 500-700, or 5-7.  Monica was at 5!  Hurray!!) we want, and what those good numbers mean (we don't have to worry about her getting sick!).  But again, not sure it will help when she's sitting in that lab chair!

Perspective - I wish I could remember how I came to realize that shots and blood draws just don't hurt that much!  I mean really, falling and skinning your knee is WAY more painful than a needle stick, but I don't see kids afraid of running down the street!  I've tried to allow Monica to see me get my blood drawn or get my flu shot, and show her that it doesn't hurt me enough to even make a face, let alone cry.  But at this point, seeing me get hurt like that is too scary, as well.  Maybe someday she'll be able to watch.  Or even better, working in the medical field as I do, maybe someday I can have a colleague could show her how to give me a flu shot or something herself!  And with active participation, realize #1 that it doesn't bother me much at all, and #2 how hard it is to draw blood sometimes!

Things that haven't worked:

Talking it up days beforehand - whoo, this was a mistake with such a little girl!  She was anxious and unhappy for DAYS instead of just an hour.  Oh well.  Never again!

Candy - I'm not positive, but I think her triglycerides might have been a little higher than they should have one time when we started feeding Monica jelly beans as soon as she sat in the lab chair to distract her.  Sugar hits the blood fast and is turned right into triglycerides sometimes!  That's why it's important to fast to get the best numbers.  So hold onto that candy until the needle is out!

What other ideas do you have?  What do you do to make blood draws easier for you or your child?

Monday, May 16, 2016

My Favorite Links

My goal these days is to post once a week, so what do you do when you want to read up on more LPLD stuff, but I'm not due for another post anytime soon?  Check out my other favorite resources!

Justine at the good life has a little boy with VLCAD, very long chain acyl-CoA dehydrogenase deficiency.  She has to limit his intake of fats and increase (moderately) his intake of medium chain triglycerides via palm kernel oil and coconut oil, so a lot of the recipes are really similar to those for LPLD and I've definitely been inspired by some of her stuff!  She even does the fancy nutrition facts for each of her recipes, pretty swanky!  And that reminds me, I need to buy some powdered peanut butter on her recommendation...

If you're looking for something to share with your primary care physician on LPLD, there is FINALLY a good resource!  NORD has a physician guide for LPLD now, and I'm telling you, it is GOOD!  I've seen a lot of web sites that were secretly put out there by drug companies that make LPLD sound even worse than it is, I guess to make you feel more helpless and like you need their expensive solution.  This web site is NOT like that!  Very reasonable in its approach, and helpful.  Check it out!

For those of you getting frustrated with your or your family member's LPLD, nothing feels better than knowing you are not alone.  My friend Quinyang has been able to put together a nice little group on Facebook (my own Facebook support group attempt never got a single member that actually had LPLD in it, ha!) with good posts and discussions.  I enjoy interacting with others in the same boat, even if it's just on the internet!

Monica trying to look sophisticated at her Little Flowers tea - lots of moms made food she could eat!  Hurray for community!
If you like to read other people's stories, I find RareConnect the best for that.  I am always amazed by the triglyceride numbers folks have at the time of diagnosis (if you have access, there was a case report just written in the American Academy of Pediatrics journal, Pediatrics in Review, on an 11 week old boy with TG's of 43,000!! wow!), or the ages of diagnosis, or the creative things people do to make the diet more tolerable.  I am still hoping to hear more good things about a woman with LPLD who was due to deliver a few months ago, and was planning to breastfeed - I would love to have more hope for my girls having kids of their own one day, if that's where God calls them!

What about you?  Do you have favorite web sites on LPLD?