By the time my son was properly diagnosed, he was extremely sick and we were relieved to find an elemental formula that could provide calories and nutrition he so desperately needed. However, we were stunned by the cost on top of already steep medical bills. The stress of feeding him was enormous.
Read moreFPIES
FPIES is a type of food allergy that affects the gastrointestinal tract. Classic FPIES reactions typically occur two or more hours after ingesting the “trigger” food and typically involve profuse vomiting, diarrhea, and can progress to shock. Reactions can be severe and require immediate medical attention. Chronic FPIES reactions are typically characterized by increasingly severe/intermittent vomiting, chronic diarrhea and possibly progressing to an illness mimicking a severe total-body infection in addition to potentially difficulty gaining or maintaining weight. There are no simple tests to diagnosis FPIES. Additionally, there are no FDA approved therapies for the treatment of FPIES. The main treatments are avoidance of trigger foods with a personalized dietary plan that ensures proper nutrition.
Brooks, Age 9 monhts
My son was hospitalized at 7 weeks old due to a reaction. At the time it was determined the common cold sent him into near shock. He was also diagnosed with a cows milk protein and soy protein allergy, then
Read moreRonan, Age 2
My 2 year old son Ronan has FPIES. He was born healthy but quickly lost to much weight within 2 days after being born and was failure to thrive for the first month of his life. Once I realized at
Read moreIsaac (13) and Caleb (11)
Over the course of five years, our out-of-pocket expenses for medical nutrition for two children was approximately $85,000. Add to it the higher cost of specialty food that they had to eat because it was medically necessary due to ingredient
Read moreKatherine, Age 8
Katherine was only 2 months old when we knew something wasn’t right. It took us 8 more months to figure out what was going on. No baby formulas would work for her. Not regular formula, not soy formula, not even
Read moreLucas, age 18 months
While we are fortunate that wic and insurance cover Lucas’s formula because of his medical necessity as well as my persistence with insurance and Drs filing out the right things, etc, many families have a lot of trouble finding help
Read moreSutton, Age 4
My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We are burned out trying to get elemental formula covered. We need uniformity on how to ensure children get the
Read moreEleanor, Age 7
Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She has had severe GERD and food allergies from birth. She continues to have Failure to
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Caroline, age 18 months
Caroline was born 7 weeks premature. She stopped breathing several times almost dying. Neocate Jr is the only think she eats to survive. Cigna refuses to cover it. And its $800 out of pocket. Employer switched to Cigna who refuses
Read moreElsie, Nearly 2
Prior to switching to my husbands employer benefits we paid $125 per month out of pocket for our daughters formula. When my husband brought home his welcome packet with insurance information in it we immediately flipped to the section about
Read moreAvery, Age 3
Coverage would ease a huge financial burden for our family. Not only is the formula expensive, but so is the specialized diet Avery requires due to so many severe conditions. Due to the fact that Avery supplements diet with Elecare
Read moreSeton, Age 3
Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergic to upwards of 40 foods. Even at the current age of 3, he can only eat about 10 foods including the formula (medical
Read moreLincoln, Age 2
Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician changed his formula from Similac to Alimentum RTF (I had a double mastectomy) and this continued
Read moreJamus, Age 9
My son, Jamus, has FPIES plus and our medical team thinks he has something that doesn’t even have a name put to it yet. He will turn 9 on Thursday and he has NO SAFE FOOD. He is 100% tube
Read moreMax, Age 17 months
My son, Max was diagnosed with FPIES after I stopped breastfeeding and he started on milk-based formula and we started introducing solid foods. He had terrible gastrointestinal reactions which almost ended up in the ER on a couple different accounts.
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