My name is Meagan Simoneaux, and my 4-month-old son Wyatt is on Elecare.
He isn’t on this formula because we decided to be snobby and buy “the expensive” stuff. He is on this formula because he requires it to survive. My son Wyatt has a severe cow’s milk protein allergy.
He was born three weeks early due to a condition I had during pregnancy called preeclampsia. He was a medical induction. Before we go down the “breast is best” road, let me stop you right there. He was physically unable to latch. It was labeled as a “poor latch, weak suck, made worse by bilateral buccal ties.” He was barely able to latch onto a bottle, and feedings were insanely stressful and difficult. Even though I had two other children at home, I was determined to give him breast milk, so I began exclusively pumping.
No amount of dairy/food elimination from my diet could bring him comfort. My milk, the “very best thing” for him even caused him gut wrenching pain. He screamed 24 hours a day for the first four weeks of his sweet little life. His stools were loose and watery at best. They were filled with blood and mucous and clearly painful to pass. Breast feeding was NOT an option for us.
After many weeks of trial and error, we were referred to a gastroenterologist who confirmed our suspicions. He had a severe case of CMPA. CMPA is cows milk protein allergy. The symptoms of CMPA can be as simple as digestive discomfort and gas, in which it could be deemed an intolerance and a formula such as Nutramigen or Alimentum can be recommended, as it has the protein already broken down. Or, as in my son’s case, they can be more severe — diarrhea, bloody, watery, mucous-filled diapers, constant screaming in pain, dry patches on the skin (eczema), reflux, runny nose, etc. My son Wyatt couldn’t tolerate even an ounce of cow’s milk protien — broken down or not.
We were started on Elecare (at the recommendation and prescription of our GI) and Levsin drops (antispasmodic) right away. She also confirmed another of our worries — he had severe acid reflux on top of the CMPA. A friend of mine said it best when she said, “It’s no big deal until you watch your child suffer with it.” Reflux is the scariest thing I have ever witnessed a baby go through. But, I digress.
So, Elecare it was.
Next step? Call our insurance. Why? $45.
This tiny little 14.1 oz can costs $45. It lasts my son roughly 2-3 days. But that is only right now while he takes 4 oz every 3 hours. He will grow and he will eat more… and fast. I’m waiting on one of those Texas-sized growth spurts my middle son had. For comparison’s sake, a can of Enfamil infant formula of the same size costs around $12-14. They also sell those formulas in much larger size quantities with bulk pricing for better deals. I know because my first born had an iron stomach. She could eat anything.
Well, would you believe that when I called, I was told all sorts of formula and medical grade food were covered under my plan? (That’s what this formula is categorized as. Did I mention my son needs it to LIVE?!) Tons of covered medical grade foods and infant formulas… all except ELECARE. This left me scratching my head. You mean I am supposed to cover this $450/month or more with absolutely NO help from you, but if he needed Glucerna, you’d ship that to my house by the truckloads?
Our GI was wonderful. She loaded us up with samples and a couple of coupons and vowed to fight for us, and fight she did. We filled out every piece of paper that Cigna threw our way. We dotted every i and crossed every t. She wrote prescriptions for caloric intake, a pre-authorization letter to the company. She wrote a letter of medical necessity. She sent our entire chart and all of her professional findings to Cigna. And we waited.
Again, we got a big fat NO. Why, you may ask? Because Elecare is only covered if his diagnosis is: inborn error of metabolism. There are several, including PKU, Galactosemia, and Fructose Intolerance. Cows Milk Protein ALLERGY??? Nah, that’s not one. And I would never ask my doctor to commit fraud, but can I tell you I have never been so angry in my entire life.
My son needs this formula to survive his first year. He cannot metabolize any other kind. But you won’t cover it because his diagnosis doesn’t fit in your little box? What am I paying for? The diagnosis may not be the same, but from where I’m standing, the prognosis without this formula is failure to thrive, dehydration, etc. (And no, I’m not saying CMPA is worse than PKU, God bless those babies and their sweet parents. That’s an awful disease.) But I deserve help too. My son deserves for his insurance to work for him too.
Did you know that in the state of Texas, it is a state mandate that insurances cover baby formula? Why wouldn’t they? Between my husband’s employer contributions and what we pay for a family plan, you are getting over $1200/month from us for our plan… it seems only fitting that you would cover a “medical grade food” that my son needs to survive his first year of life.
I wonder if he were admitted to the hospital for failure to thrive and dehydration would you fight me to pay that bill? Or would you rather shell out that kind of money than contribute to his health and wellness up front? It’s truly disgusting to me that you would put parents through this type of nit-pickiness at one of the most challenging times in their lives.
I live in a fairly small town. That being said, I don’t have enough fingers to count how many babies I know personally who have been prescribed this formula.
To our law makers, I propose you change the law. Mandate that our state become one of those states that forces our health insurance to work for us and not against us. Do the right thing.
The parent of a child with a food allergy
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