Soon after Monica's diagnosis and really understanding it, I began to think about what we would do if we had another child with LPLD. At what age would we check our baby's cholesterol levels? And most of all, once we checked, what would we do if he or she had LPLD?
I feel strongly that if you're not going to CHANGE something after checking a medical test, be it an image or a lab, then you shouldn't check it in the first place. Knowledge is nice, but at least medically, knowledge without a plan of action is a waste of money and effort.
|I can't give this up. So how can I make breastmilk work for my special little LPLD baby?|
Obviously, if my baby had already had a case of pancreatitis, I would quit breastfeeding and feed the nonfat formula. The danger to her life from pancreatitis is too great to mess around with, especially when that little and delicate. But given that she was still healthy and gaining weight those first few months, we would just do breastmilk and check TG levels at 6 months, as we were starting complementary first foods. From then on, since I had to work and have my husband feed my pumped breastmilk anyway, I would separate the fat out of my breastmilk from then pumped milk. I would breastfeed from the source when I was with her, so make sure she got some fat for brain development. But I hoped that by decreasing her fat intake from my milk in this way, it would decrease her chance of having symptoms of LPLD. For me and my baby, it's a balance between brain growth and lifelong benefits of breastmilk, and avoiding symptoms, rather than relying on the TG numbers. Monica, after all, didn't develop symptoms until around 18 months, and even then they were rather minor. The new baby would have the added benefit of knowledge of her diagnosis, so the complementary foods we would feed her, from the beginning, would be low fat. Plus, instead of whole milk being added after 1 year of age, we could go right to skim.
I went to a small conference many months back hosted by NORD and asked them about my plan. Luckily, even the lipid and genetic specialists knew already that the health benefits of breastmilk are huge, especially for a baby who has another serious health problem, like LPLD. They had never imagined a mom willing to go through the craziness I proposed to breastfeed her baby, but they were interested and supportive of my efforts.
And that is how I came to buy a milk separator. The kind used by small dairies to get skim milk and cream from their milk. But I'm not using this on cow or goats milk. I'm using it... on my own milk.
|This. Is. So. Weird.|