People with severe mast cell disease are at risk of losing all foods due to reactivity and anaphylaxis. These patients are often dependent upon elemental formulas for nutrition. These formulas are incredibly expensive but lifesaving for many.
Recently, one of these elemental formulas, Elecare Jr, was re formulated. Some patients who have failed EVERY OTHER nutrition option rely upon this formula to stay alive.
The mom of one of my little masto buddies graciously agreed to explain the importance of this elemental formula to her son, Ollie:
“Hi Lisa, here’s a little on why keeping formula the same for Ollie is
Ollie was sick on day one of his life. We started nursing and he was a
“puker” on day one. By 2 weeks old I thought he was MSPI and cut dairy
and soy from my diet. At 4 weeks old he was gaining weight, but not
fast enough, covered in rashes, throwing up nearly constantly and just
screamed for hours. We did this for a total of 4 months. Changing my
diet, with no change in him. At 4 months old his pediatrician
diagnosed him as failure to thrive. She gave us a can of Elecare
infant. Within 2 weeks, he was a whole new kid. No rashes, no more
vomiting, his stools looked phenomenal and for the first time, he was
gaining appropriately! He was diagnosed with Fpies around 5 months
old. Oliver then continued to fail all solid foods. Elecare infant was
his sole source of nutrition. We tried switching him to Elecare Jr and
Neocate Jr. He reacted to those as well. At 18 months old, Oliver was
diagnosed with MCAS. Thanks to medication, he gained his first food,
Eggs about this same time. He still relied primarily on Elecare
Infant. By 18 months it had helped him get to 50th percentile in
weight! When Oliver was 2.5, he gained his second safe food, broccoli.
He’s added 8 more foods since then. Today, he’s 6 weeks from his third
birthday. He has 10 safe foods and relies on Elecare Infant for 90% of
his nutrition still.
Abbott has changed their labels and the names of some of their
ingredients. They claim they didn’t actually change anything in the
formula, but one change, one minor change could mean a reaction for
him. If he loses this formula, he has no other options. He will slowly
become nutrient deficient causing many other problems that he doesn’t need.
We need Abbott to leave their formularies alone!”
I know lots of kids (and adults) just like Ollie. They need our support right now. If you are so inclined, please consider adding your name to a petition asking Abbott to reconsider their new formulation of Elecare Jr. Mast cell patients (and other patients with significant nutritional difficulties) need your support.
Hope everyone had a safe and happy weekend! Can’t wait to see everyone at the weekly Q&A this Wednesday at 7-9pm, EST.