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!