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!

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