Saturday, December 26, 2015

Thoughts on parenting a child with LPLD

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

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

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

Now as a kindergartener, we can discuss things a little more, and gradually introduce her to the idea that what matters most in deciding if she can eat something that is high fat, is 1: whether she thinks she can stop herself after just a bite or two, and 2: what fat she's had to eat for the last week, and whether she has special events coming up in the next week at which she might want to eat more fat.
Graham cracker gingerbread houses with nonfat frosting and nonfat candy! The Holidays are a tough time for budgeting fatty foods

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

As a parent, I worry that fat will be set up as something Monica can never have, as something so delicious that she longs for it, the forbidden fruit.  That will set up trouble for when she wants/needs to rebel against us, as her parents.  When Monica is a teenager, we want her to rebel against us by wearing silly clothes, using offensive language, and getting her ears pierced without permission.  We don't want her to have a milkshake and a Big Mac.  That's why we use the phrase '(that food) will make you sick' instead of '(that food) is bad' or something similar.  Her getting to eat a fatty food should never have bearing on her behavior, her sweetness or naughtiness (our children are always inherently 'good,' and never inherently 'bad;' that's what I get for marrying a philosopher :) ).   Getting a spoonful of peanut butter is not a reward for doing chores, but it could be something she gets after eating very low to non fat meals for a while, as a natural consequence rather than a reward.  It's a small difference, but one we hope to emphasize to Monica and prevent her from getting pancreatitis, even as she matures and grows away from us as her parents.
Teresa laughing with her uncle - there are joyful things in life besides food!  But sometimes with LPLD it's hard to remember that.
But it's not fair!
Children with LPLD and their parents, alike, have this thought.  Frequently.  A lot of the solace in our family comes from our Catholic faith, and our (continually growing) understanding and acceptance of why God allows bad things to happen to good people.  We talk with Monica about Heaven, where she won't have LPLD anymore.  We talk about offering up her sacrifices for other people who are suffering (basically, praying that God might take away the suffering of someone else, even just a little bit, if you accept your current suffering without complaint, emulating even just a little Christ's suffering on the cross (this works for parents watching their child suffer, too)).

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

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

Merry (low fat) Christmas!


  1. Test comment to make sure this works; I welcome comments I feedback on this blog!

  2. I got diagnosed with this condition when I was around 7 years old (I'm 23 now) they only found out I had the condition when I had a pancreas attack. On daily medication now and do go through phases were I'm eating whatever I want but soon snap out of that phase when I realise the harm I am doing to my body. Having taken up a sport at 16 and now competing professionally where diet is a major part of it, I find it soo much easier. I've been told there has been progress with the treatment of the condition but it is rather expensive and I would have to have another episode of pancreatitis before I am eligible for this, Great!

  3. Waleed! I had kind of given up on anyone actually ever finding this blog helpful, thank you so much for commenting and I'm sorry it took so long to reply! Wow, what a great point, how taking up a sport can help keep you focused on your diet in a positive way rather than just 'things I can't eat.' What sport do you compete in? I've done a lot of research into the gene therapy that costs $1 million, if that's what you're referring to. It's a pretty painful process (30 shots in your legs at a time, repeated at least once) and from what I've read, the decreased episodes of pancreatitis last for up to 10 years. For $1 million, I want a permanent cure, you know! I don't think it's worth it, at least not for my girls. Anyway, thank you so much for reading!

    1. Hey it's fine. I took up boxing around 7 years ago. And I have been competing professionally for the past 2 years. It's going really well. I agree for $1 million dollars you would want a permanent cure! I personally don't believe it's worth it as a good enough diet will keep everything under control. All the best with your children, they will be fine growing up. God Willing.

  4. Being diagnosed at age 1, I only ever knew I was different by the foods I ate. My mom was meticulous about everything I ate. She met with the school lunch ladies and I had a special meal in a different line at school; they ordered skim milk in little cartons just for me; sleepovers meant taking a few groceries; birthday parties meant my mom talked with the hosting parent to make sure I ate no cake or ice cream (torture!!)... in fact, by the time I was in high school, I doubted whether I was really sick at all, because I was so well!

    then i went to college ~ REBELLION was everywhere. I ate and drank and went to rush parties and tried to keep up with all my new "friends" and I didn't want to be the girl I was in school, I wanted to be normal, and eat like everyone else.

    I was a computer science major. I suffered from migraines and stomach aches. Everyone was sure that I had ulcers from stress and working all night in the computer lab...
    But one weekend, I was SO SICK! I drove home from school crying all the way.

    I landed in the emergency room with acute case of pancreatitis, and thank GOD that the doctor on call was an endocrinologist who became my regular physician for the next 30 years.

    Deprivation is not the answer. I still will "binge eat" sometimes just because... I have no real solid grasp of why I do this. It only hurts me! But I do feel deprived. And I want it. And because it's "delayed" consequence, I feel like I'm sneaking and I'm getting away with something... but seriously. Who do I think I'm kidding?

    Oh, we are such imperfect humans.
    Grateful for salvation, and I hope that God has lots of Food City grocery BIRTHDAY CAKES with LARD ICING ROSES on them.

    1. LOL! Yea, those icing roses really do just taste like lard. In heaven, I would LOVE to give you some better recommendations than mass produced birthday cake :)