How Do Holidays Change With LPLD: Christmas!

Merry Christmas!  We are in the midst of our 12 days of celebrating.  This is how we do it with LPLD, maybe it will inspire you for however you celebrate in December, and throughout the year.

We spent the month of December making a batch or two of cookies each weekend, and saving them (in tins, outside in the cold to keep them fresh) for Christmas Eve.  A plate of that variety of cookies serves us as gifts for teachers, landlords, etc, as well as dessert for Christmas Eve and many days after.  A few cookies in front of an (electric) fireplace while singing Christmas carols is a perfect blend of treat and family-strengthening memory-maker for us.  At some point, we also like to have a birthday cake for Jesus, which is typically angel food cake, served with strawberries (previously frozen, it is December, after all).

For stocking stuffers, this year the girls got a container of Mike and Ike's each, which they polished off in a few short hours.  Otherwise, they get bubble bath, hair ties, band aids, stickers, temporary tattoos, pretty stationary, and/or jewelry for their stockings.  We have a steady supply of (fat free!) candy canes of various flavors on the Christmas tree for bonus treats.  In the future, we might put apples, oranges, or (low fat) granola bars in stockings, since it's hard to get anyone to eat breakfast on such an exciting morning, anyway.  But that's all the sweet treats we provide for the season!  Christmas lunch this year was a smorgasbord of snacks laid out, including a can of high-quality crab, shrimp, cocktail sauce, fat free cheese, tastey farm bread with balsamic vinegar, and carrot sticks.  For dinner we had prime rib, roast beets, and sweet potatoes.  After cold walks or bike rides outside, we are pretty easily swayed to pass out hot cocoa made with skim milk and chocolate syrup.

Now that we've done this for a few years, there certainly doesn't feel like much of a sacrifice in our family to have plenty of delicious LPLD options for the holidays.  I hope it feels like that for you and yours, too, and that you finish out 2018 with plenty of joy and relaxation!

Lowest Triglycerides Ever!

My eldest daughter just had her annual labs done.  Her triglyceride control has been so good, and blood draws so traumatic, that we just check them annually.  It was remarkable first of all because it was the best she has ever handled the blood draw.  We were able to obtain some numbing cream and tegaderm bandages to place in both antecubital fossas (where they draw blood, the inner elbow area) so that the actual needle stick wouldn't hurt on her skin.  We even showed her how well it worked the day before, so she could see how numb her skin went (she exclaimed, "my skin doesn't feel like my skin!").  We talked up how brave she was, and other examples of bravery, and watched some Winnie the Pooh during the draw, and talked about how silly it would be if honeybees could really laugh.  And then it was over!  And she got a pretzel and a hot chocolate (steamed skim milk with three pumps of nearly non fat chocolate syrup) from the local coffee shop to celebrate her bravery.  HURRAY!!

And then we got the results: 300!  I hate to sound like a jerk when there's many who would kill for such a good lab number with LPLD, but it really makes me nervous, it's so low.  I've always been more on the edge of, get it as close to 1000 without going over or putting her into pancreatitis, to make sure she's getting sufficient fat-soluble vitamins and fats that she can grow and develop well.  But she's growing so well, both height and weight, and thriving in school, that I guess it's OK!  Wow.  The only changes we've made recently is incorporating MCT oil instead of coconut oil into baked goods, and encouraging exercise through paying her a quarter for every quarter mile she walks, outside or on a treadmill.  Nothing drastic.  Maybe those changes have nothing to do with her low levels, maybe she's just bigger and getting a few more LPL enzymes with her bigger size, and so better able to process triglycerides in her limited way??  We're certainly not going to change her diet much - still all skim milk, fat free cheeses, no bacon or sausage, and no chocolate (except chocolate syrup and Snackwell's cookies).  But maybe we'll let her eat more salmon, not stress so much about how many tortillas she can have, and not stress about how much olive oil my husband likes to add when stir frying.  Next up: my youngest daughter's blood draw.  Just as traumatic, and worrisome, but we need to get it done!

How Do Holidays Change With LPLD: Advent

Aw, snap!  I bet you were expecting Christmas next!  But no, we are Catholic, and we save our Christmas celebrating for after December 25th and spend the 4ish weeks prior preparing for it.  We space out our decorating (this year the first weekend we set out advent calendars and outdoor lights, next weekend we get other indoor decorations and nativity sets, the next weekend is a tree with lights, and the final weekend we'll put ornaments on it), we light up our Advent wreath every night with dinner, we sing songs about the coming of Christ (but not His birth yet!), and we do readings every night from the Bible showing how Christ's birth was foretold throughout the ENTIRETY of that holy book.  None of which is impacted by LPLD!  Hurray!

But we also start making cookies for gorging ourselves on after Christmas.  And we have Advent calendars for each of the kids, which are usually chocolate.  How do we manage that?

Luckily I found this neat Advent calendar house at a German Christmas market:

It's gorgeous and a little flimsy (we glue on a few doorknobs every year), and a little crunched for space with two LPLD girls, but we've made it work so far.  This one seems pretty similar.  I can fit a small toy (either a finger puppet or a tiny ornament for Monica's own little Christmas tree in the playroom) and two small pieces of candy into each drawer and voila!  They have a special thing to do every night through Advent, just like my other daughter who doesn't have LPLD and gets a store bought Advent calendar with a chocolate for every day.  Everyone ends up pretty happy!  I've also seen neat toy-based Advent calendars which also seem like a good LPLD option.  For us, though, we like being able to just use the same toys every year, and not add to the toys which are already taking over the house!  And, honestly, I think the candy is important when compared with my other daughter's chocolate.

The back bell-shaped plate is all LPLD safe goodies!

And then cookies!  I love to have a huge variety for me and my husband, and so I like to make quite a few kinds for my LPLD girls, too!  Here are links to what I'm making this year:

meringues (with a few mini chocolate chips or one chocolate chip per cookie)
gingerbread folks (sprinkles are fat free!)
self frosting (vanilla) drops (from St Nicholas day)
peanut butter cookies (new!  I'm trying these for the first time this year!)
maybe pumpkin cookies, too!

LPLD gingerbread houses are pretty easy, too! Graham crackers with fat free candy held in place with fat free frosting

What LPLD ideas to you use for this time of year?

How Do Holidays Change With LPLD: Thanksgiving

 A holiday based around a particularly low fat meat?  And fruit based pies??  Perfect for LPLD!

The hardest part of Thanksgiving, in my opinion, is extended family who doesn't understand LPLD.  The last thing I need in my life is a well-meaning aunt or uncle pressuring my daughter to try a food that might make her sick.  Or even just offering a food, with my daughter assuming that any adult offering a food must know what they are doing!  For this year, at least, we are living on a continent apart from family, so it wasn't an issue this year!  Here's what we ate:

A breakfast of pumpkin muffins, though with at least half flour being whole wheat flour, and a lot less sugar than these call for.  I'll try and blog about my exact recipe sometime...  My girls ADORE it when I put pumpkin seeds on top, usually about 3 per muffin, I guess it looks fancy.  And if one girl also gets to help stir, and another to grease the muffin pan with a pastry brush and some melted coconut oil, and another gets to put the seeds on top, well then it's a perfect morning!

This year I also happened to have some fat free cream cheese on hand, so I added a tablespoon or two of maple syrup for sweetener, and some vanilla extract, and we had an extra special breakfast.  My non-LPLD girl wasn't a big fan of the frosting, it doesn't taste quite the same as full fat cream cheese frosting.  But my darling LPLD 3 year old absolutely adored the frosting, but still consented to eat the rest of the muffin.  I count that as a serving of vegetable for breakfast!


We snacked throughout the day on muffins while we watched the parade (from last year, ah time zone changes...).  We had a cream cheese/crab/chili sauce dip to snack on for the adults, so the LPLD girls only got to snack on canned crab (rough life!) with chili sauce, which is still delicious, don't worry!

Our traditional feast always has to include a grilled turkey, which every single year my husband swears is ruined and burned (note his thumbs down), but every single year is delicious and fantastic.  He makes a glaze out of cranberry sauce and chili sauce, so it's a little barbecue-y, which is also notably fat free.  And if you're a kid with wimpy taste buds, you take off the skin of the turkey that's loaded with the glaze, so we don't even have to worry about that fat for our LPLD girls.
So much of Thanksgiving revolves around sides which we have found pretty easy to make low fat and vegetable dense.  Some rainbow carrots prepared a la Jamie Oliver were stunning.  We also had his minted peas with less oil added than he calls for.  In the past we've also had sweet potato pie (our secret is orange juice concentrate that really sweetens and adds flavor).  Then a simple french bread, and that rounds out our Thanksgiving meal!

For dessert, I've had great luck with MCT oil for an oil pastry crust, and then apple pie is a no-brainer.  With fat free whipped cream for special occasions!

How was your LPLD Thanksgiving?  What are your go-to menu items?  Any secret ingredients to make it all extra delicious?

Benefits of Breastfeeding - Even with LPLD!

The good news is that folks with LPLD are getting diagnosed earlier, even as babies!  The bad news is that they are still being told some crazy things by medical folks who had never seen this condition before.  The good news is that in all likelihood, if those kids have been practicing this diet for as long as they can remember, they seem to have an easier time sticking with it for life!  But that's just given my experience with a few adults who were diagnosed with LPLD as kids - if they never got in the habit of getting delivery pizza, they don't miss it!

I've been encouraging a few parents of LPLD babies to push to continue breastfeeding, so I thought I would lay out a few reasons it is even MORE worth it to breastfeed when your kid has LPLD!

-essential fatty acids and the best of fats - it's a tough balance with little kids, since their brain is developing and NEEDS fat, but LPLD kids can't have much!  You've got to make sure that what fat they DO get is LOADED with good stuff.  Some of this hinges on mom's own diet, but especially if she eats 1 to 2 portions of fish per week, her milk will be loaded with the awesome DHA that is so good for babies!  The same can NOT be said of fat free formulas, and not even necessarily with regular formulas - remember, a few years ago we didn't know that DHA was so good for babies, so formulas didn't have it at all.  But breastmilk has had it all along.  We don't know all the good stuff in breastmilk, but whenever we find something new, formula companies rush to add it to their products.  Why not skip the imitators and stick with breastmilk?

-decreased risk of diabetes - the more I meet people with LPLD, the more adults I meet that have LPLD and type II diabetes and hear about the difficulty of their diets - low fat AND low carb is way harder than low fat alone!  Plus both processes involve damage to the same organ, the pancreas, so I feel like they build on each other and make the other even worse.  If there's anything I can do to help prevent my kids from developing type II diabetes in the future, I'm going to do it!

-future benefits against cardiovascular disease - I'm still pretty convinced that folks with LPLD do NOT have an increased risk of heart attacks, unlike most cholesterol problems.  But just in case, breastmilk decreases what risk they have!

-decreases chance of other diseases (not particularly related to LPLD) like asthma, diarrhea, colds, SIDs, NEC (a BIG concern for premies!), certain kinds of cancer - a baby with LPLD has enough going on, might as well decrease the risk of these other medical headaches and even life threatening problems.

So how do you do it?  Check out my other blog posts on either separating pumped milk in syringes in the fridge, or even getting a milk separator - a $300 price tag will easily be saved in a few weeks of formula that you don't have to buy.  Or see if your health insurance will cover it, it's worth a try!  Each baby is a little different in how much skimmed vs whole milk they should have, so that's something to work on with your healthcare team.  For me, I breastfed my babies when I wasn't at work, in evenings, nights, and weekends, and skimmed all my pumped milk, and it worked out great.

Having had a baby diagnosed with LPLD at 6 months of age and started solid foods with her, there's no easier time to keep a diet fat free than with such a little baby!  Breastmilk has lots of bioavailable iron (it's easier for baby bodies to absorb the iron present in breastmilk than that in formula, even though technically they load formula up with iron to make it look like it has more and is therefore better), but I still like to make it a priority to get iron-rich foods into my kids as some of their first foods.  My favorite is ground beef; easy to get little chunks that babies love to feed themselves, plus I can buy super lean beef, cook it, strain off the fat, and even rinse it in a colander to get all the fat off that I can.  Bits of chicken are good, too!

Says who?
Here are some of my favorite articles that back up my above statements.  Of course, if there's something that you'd specifically like some data on, message me or comment and I'll dig something up for you!
The World Health Organization - LOVES breastfeeding
American Academy of Pediatrics - note that they even have a list of conditions for which mom or baby should NOT breastfeed.  And LPLD and FCS are NOT listed.  Why?  Is it because they are so rare?  Nope, they discuss galactosemia for heaven's sake, and that only happens in 1 in 30,000 babies (not as rare as LPLD, for sure, but not common!).  LPLD is simply not a contraindication for breastfeeding.
American Academy of Family Physicians - 6 months of breastmilk alone is the goal, at which point you start adding solids

If you're having troubles with breastfeeding, some of my favorite resources are Nancy Mohbacher, the Milk Meg, La Leche League, and Kellymom.

How Do Holidays Change With LPLD: Halloween

I don't think I ever thought about it concretely when we were newly diagnosed, but I think in the back of my mind, I was so scared that my girls would never get a 'real' holiday now that we knew they had LPLD.  What a sad thought!  And a reasonable thought!  But the good news is, we have been having big wonderful family celebrations for years now, and my LPLD girls love them every bit as much as any other kid.

So, how do we make it work?  Since we're going through Halloween right now, I'll share that.

Trick or treating:  LPLD kids get used to eating differently, and that's OK.  And it applies to Halloween candy, too! 

\~1 and 2 year olds usually aren't big enough to walk AND hold a heavy candy bucket, so you are usually in charge of the bucket (if not also holding the kid).  So, you carry your own bag of candy from home that is completely fat free, and surreptitiously switch out candy given to them at neighbor's houses with safe ones.  A kit kat for a skittles, a snickers for a twizzler, etc etc.  Those chocolate ones might just end up in your mouth, by accident!  And even if your kid notices and asks, it's a good time to enforce the 'parent tax' that I think is an important part of receiving any holiday treat.  Mom or Dad get a bite or a piece of your good stuff sometimes, and that's the way it is!  I used to get so frustrated with my neighbors not caring enough to hand out non-food treats, or at least have non-chocolate candy available for my daughters to choose out of their bowls.  But most didn't have a clue about our LPLD struggles and it was unfair of me to be thinking that.  Harboring all that anger and frustration really wore me down, too!  I've heard of some parents of allergy kids that go around to their neighbors ahead of time with zip lock bags full of treats their kids CAN have, with a note explaining the situation and a description of what costumes the family will be wearing.  That's a little much for me, especially when so many candies ARE low fat, but it's a better option than just being angry at everyone around you all the time!

~3 year olds are already surprisingly good at this LPLD thing.  Last night while trunk or treating, just telling her that this candy will make her sick, and offering another one, went over just fine.  By now, fat free candies are the ones they are most familiar with and enjoy the most because of happy memories together!  So even though she was tired and overstimulated, Teresa had no problem substituting candy she received last night, piece by piece.  Plus, there was a glorious table (provided by a local dentist!) where they could switch out candy for cheap plastic toys.  What a great thing to do with candy that you're not allowed to eat anyway!  Spider rings and star sunglasses, you are where it's at!!

~Older kids get even better at switching candy with friends and siblings.  They can get quite crafty!  And while I'm sure they will one day rebel and snack on some candies that are forbidden, it's also not as tempting to eat those forbidden fruits when you have tons of other delicious candy sitting right in front of you.


Parties: As with any party, it's awfully wonderful when the hosts make allowances for your LPLD kids when planning foods - looking on the bright side, it's nice to have a new way for friends to show they love you!  But for most parties, it's best to ask what kind of foods, snacks, and desserts will be offered and bring your own fat free alternatives.  For a special treat, we rely on Amy's cheeseless frozen pizzas; they are still pretty high in fat, especially if your kid can eat a whole pizza by themselves in one sitting, but for once in a while it works well for us.  We also sometimes make our own pizzas with low fat sourdough crust, fat free marinara, fat free cheese, and toppings (current favorites are artichokes, apples, mushrooms, and pineapple).  You can provide just a single serving dessert for your child (we'll be having caramel apples tonight, and my LPLD girls will be dipping apple slices in nonfat caramel sauce, yum!), but if you have time you could offer to bring a dessert for everyone like these candy corn jello treats.

It's easy to get fixated on holiday food that your kids CAN'T have with LPLD, and forget about all the non-food parts.  But a lot of Halloween is about decorating the house, carving pumpkins, watching scary movies, and making and playing in costumes.  There is tons of fun to be had, LPLD or not!

Non-LPL Birthday!

Happy 6th birthday to my second child!  The only one thus far without LPLD.  Maybe someday I'll be able to make a low fat cake for everyone and be happy with it... but I haven't reached that stage of maturity yet.

For now, I am stuck planning two cakes.  Stressing over two cakes.  Making two cakes.  Striving to get the cakes both tastey and beautiful and appealing to children.  Wow, it stresses me out.

Good thing she's worth the stress

When I'm able to find someone to outsource to, I LOVE paying someone to take over the anxiety and make the two cakes for me.  But so far here, I have had zero luck finding a baker or bakery willing to make very-low-fat-cake or -cupcakes for me.

So here I am, trying a new frosting recipe.

I rely on nonfat chocolate brownie mix as the only alternative to angel food cake.  Mix a full box with nonfat greek yogurt, and I can make little cupcakes or a bigger cake!  Because as amazing as angel food cake is, I don't blame my girls for wanting some chocolate in their lives, too.

The frosting has always been my challenge.  I don't get along with 7 minute frosting, I always manage to mess it up and let it go flat, or it slowly melts and drips off my creations in the days after I make it, before we've finished the whole cake.  I've made 'frosting' out of powdered sugar and nonfat greek yogurt, but it lacks a richness and creaminess that frosting deserves.

Today I took some firm coconut oil (the ambient temperature happens to be just right) and mixed a proportion of 1 tablespoon coconut oil to 1 tablespoon nonfat greek yogurt to 1 cup powdered sugar.  Plus a dash of vanilla extract and a dash of almond extract to detract from the coconutty-ness.

I am by no means a professional cake decorator, but it will have to do.

So far, it's a perfect frosting texture!  We'll see what the girls think of it!  In the future, I would consider making it with MCT oil to ensure it really has only the medium chain triglycerides that are good for my girls.  But then again, MCT oil doesn't solidify at room temperature in the same way coconut oil does, so maybe the texture wouldn't be right/   I'll worry about that next time!

A Reminder For When Everything is Going Well

I don't want to forget this incident, so I'll tell you about it.  A few months ago, I bought a box of my favorite Belgian chocolates, and then saved them on top of the microwave, for a dessert on the weekends to share with my husband.  After a few weeks of assuming my husband was sneaking them now and then, the box was empty, which was not something my husband would do.  I shared this with my husband and we sat down with our 5 year old who does not have LPLD, to have a heart-to-heart about stealing.

She look confused, and denied knowing what we were talking about.  I was surprised - she's not a great liar, thank goodness.  And in the meantime, her big sister had run out of the room and was crying.

Finally it dawned on us, and we asked Monica if she had eaten the chocolates.  She admitted to it.  And this shattered our world.  Monica has LPLD and knows it.  And knows the consequences of eating fat.  And knows that chocolate is one of the big no-nos of our house for her.  Especially in large quantities!  And she is so trustworthy and honest and responsible with her LPLD!  And here, a whole box of chocolates was totally gone!  Did we need to take her to the clinic?  Have her triglycerides drawn?  Freak out about the chance that she was going to get really sick from this???????

A statue of Anne Frank in Amsterdam.  A little girl who did hard things.

Obviously, freaking out wasn't the solution.  And really, she'd been sneaking chocolates for so long now, if she wasn't having stomach pains already, it was likely she wasn't going to go into pancreatitis.  Thank God!  But wow, what a surprise!  We should have been expecting this eventually, but surely not until some more rebellious pre-teen years!

But Monica didn't eat the chocolate to be rebellious.  She ate them because they were delicious and easy to get to.  Poor thing, chocolate is indeed amazing.  When it came down to it, we talked for a long time while hugging and rocking Monica, and lamenting what a burden LPLD is and how we wish we could give her all the chocolate in the world.  In heaven, I am sure she will eat chocolate non-stop.  But for now, we will try to help her avoid temptation and keep things like that out of sight and out of reach.  And she will try to trust us to tell us when something is just too tempting.  We can make temptations go away.

So if you ever wonder why we don't keep Oreos on hand, for our middle daughter, or for us, this is why.  Why snack bags of chips, or even big bags clipped shut, will never be acceptable in our house, this is why.  My LPLD girls have enough struggles, the last thing I need to do is foolishly tempt them myself.  We're certainly not a fat free house, but we're also not a mindless-snacking-on-fat house, either.

Flowers are fat free!!

There was a tiny part of me that was disappointed that she didn't get pancreatitis from such a large amount of chocolate - that would really teach her!  Ugh, what an ugly thought.  And a bigger spark dwells in my heart, that maybe as an adult she'll be able to eat more chocolate than we think right now.  That maybe she'll get comfortable enough with blood draws to do a few tests of eating different strengths of dark chocolate and see how her triglyceride levels respond.  Maybe I'll sit on the couch one day with my eldest daughter and share a small box of Belgian chocolates.

At least I can dream.

The most exciting research I have seen in a long time!

Oh man.  I love it when my interests coincide.  I was at a lactation conference with ABM and ELACTA to earn lactation consultant CME last May in Rotterdam and look what I stumbled across!

As far as my Pubmed searches go, the research hasn't been published, just presented so far.  And it will probably be published in German first.  But anyway, this is what the author (M. Stosik is my hero!) did.

A little background: chylothorax is (another) rare condition that can happen especially after heart surgery in babies, where the thoracic duct in the chest is damaged during the surgery, such that fats from the blood and diet can then leak into the chest cavity.  It's not good to have fat floating around in your chest!  So these post-operative babies are placed on a non fat diet (sound familiar) until their thoracic duct heals.

Nonfat formula exists, but it would be awesome to make fat free breastmilk easily at home, right?  So these clever researchers devised an easy way to use big syringes in the refrigerator to make skim breastmilk.  They filled syringes full of breast milk, let the milk separate into fatty and fat free portions, then squeezed the fat free milk out for baby to eat (and found something else useful to do with the fat - like for these babies, save it for later when the thoracic duct is healed!  But for LPLD babies, I've also seen milk banks that accept it with eagerness).  But, the question becomes, is this system really good enough?  How fat free does this milk actually become??

Well, they had a lab, so they checked!  After 3 days in the fridge, they got the fat down from 4.40% tofat free' though is less than 0.1%, and is best obtained with centrifugation.  But could this be used by moms of LPLD babies???  Maybe!
0.47%.  Wow!!  They even tried frozen breastmilk and thawed it and let it separate out - yep, got it less than 1%.  The only pain in the butt with this, practically, is waiting a solid 3 days, which can be hard if a mom's supply is just enough to keep up with the next day.  At 24 hours the milk was still down to 1.77%, then 1.18% at 48 hours, so not bad.  The standard for being '

Each baby's exact mutation that's causing LPLD can be a little different, or expressed a little differently in his or her body.  That's why some adults have to stick strictly to <10 g of fat per day, and others have a little more wiggle room.  It can also depend on how sensitive your pancreas is, it seems like if you've had a few episodes of pancreatitis in the past, you are more likely to have them in the future with lower TG levels.  This method of making skimmed breastmilk could definitely benefit newly diagnosed babies, especially as a first step in seeing how they respond to a low fat diet, or when a LPLD family is travelling (I'm not bringing my centrifuge nowhere!).