Abbott Nutrition: Bring Back Old Elecare Jr. - Don't Let My Friends and I Starve To Death
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My name is Cheyanne and I have not eaten food in two years due to a medical condition known as Mast Cell Disease. Instead, I receive formula pumped directly into my intestines through a surgically placed tube in my abdomen. Although the concept of life without food strikes most as peculiar, that is okay, because I have the formula Elecare Jr. Well, I had Elecare Jr.
Recently, when I received a monthly shipment of Elecare Jr., I noticed that the outside packaging of the formula cans had changed. That immediately caught my attention. I scanned the labeling to find a few discrepancies in the ingredients (i.e. m-inositol to inositol, Cupric Sulfate to Copper Sulfate, etc.). Upon calling the company, Abbott Nutrition, they explained that they edited their labeling to make the ingredients easier to read for the general public. As an alternative to using the fancy terms of various vitamins and minerals, they simplified the names. They assured me that there were no alterations in the ingredients. The changes were strictly to the outside packaging. Their response pacified any initial alarm.
Later, I administered a can with the updated label through my feeding tube. My insides felt as if they were on fire, it increased my overall pain and the frequency of episodes of ventricular tachycardia (a potentially fatal heart rhythm), and caused significant swelling. I deemed the reaction a fluke, but resorted to using the two cans I had left of the older labels. I eventually returned to my baseline until I had to use the new shipment again. And again, I started reacting.
Despite Abbott claiming that Elecare Jr. is no different, my body indicates otherwise. It is not just me either. Multiple others have also experienced reactions to the Elecare Jr. cans with the new labeling—even sending patients to the emergency room for epinephrine administration. Thankfully, I am able to provide my own at home.
After calling, Abbott is not necessarily inclined to resolve the situation. They claim there have been no reported complaints. Yet, I personally know of at least 5 additional patients and families who have called. They continue to adhere to the claim that they edited their labelling for easier understanding with no change in the product. Does that make sense? The wording of nearly every ingredient is complex, but Abbott changed only 4.
This is very worrisome, as Elecare Jr. is my sole source of nutrition. All other tube feeding formulas are not tolerated and I respond poorly to Total Parenteral Nutrition, which is a form of IV nutrition. Without the old cans of Elecare Jr., myself and a few of my closest friends that share the same disease will literally starve to death.
I realize that it is unlikely to influence an entire corporation due to a subset of extremely sensitive patients. They see dollar signs, not the suffering of living breathing people. My hope is that with enough signatures, Abbott will bring back the old formulation of Elecare Jr.—or at the very least, admit the truth rather than selling some cockamamie story and dismissing our concerns.
New Elecare Jr. Unflavored - 77545Z20 0931178
Old Elecare Jr. Unflavored - 74975Z20 1130058
What is Mast Cell Disease?
Mast Cells are a type of immune cell produced in the bone marrow. They are commonly referred to as “allergy cells,” as they release chemical mediators to protect the body against invading pathogens—allergens, viruses, etc. With Mast Cell Disease, the mast cells trigger easily and release their mediators without the presence of a true threat. Symptoms may range from hives and gastrointestinal distress to full blown anaphylaxis. Severely afflicted patients, like myself, live in a constant state of anaphylaxis and require a continuous infusion of IV Benadryl infused through central line. "Triggers" include food, chemicals (i.e. cleaning products, perfume, etc.), hot or cold temperatures, fillers and preservatives in medication, hormonal fluctuations, infections, and more.
Some patients with Mast Cell Disease are so sensitive that the plastics in various medical products result in anaphylactic reactions. For example, there was one occasion when my home health care company switched brands of syringes that I use to flush my feeding tube. I began reacting. While I tolerated the type of plastic that comprised the usual syringe, I did not tolerate the different plastic in the new one. So, it is no surprise that a minute change in any Elecare Jr. formula ingredient wreaks havoc for patients with Mast Cell Disease and other allergic conditions.
Visit my blog, Hospital Princess, for more information.
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