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Karie M. | Florida | Patient Age: 10 & 13 | Disorder: Phenylketonuria (PKU)

Our son and daughter rely on metabolic formula to maintain their daily nutritional needs and developmental support. Abbott’s Phenex formula has been their medical formula since the time of their metabolic diagnoses of Phenylketonuria (PKU) at 7 days old. Much like dairy milk becomes a familiar comfort for folks that grow up with it, Phenex is that comfort and familiar go-to for our children. They’ve grown accustomed to the taste and often crave their formula when they are feeling tired, overwhelmed or ill.

The immediate need to transition from Phenex to any other metabolic product is a jarring one; not only because of the supply chain delays in getting other products to try but also because it’s especially challenging for kids who don’t want to change and can’t fully comprehend the “why” they have to.

We know we are just one family of countless others affected by this. However, please understand how the disruption of supply has created multiple waves for each of us. Our family has been working non-stop with our metabolic clinic to find other options quickly and authorize temporary supply of other products. We’re in constant contact with our insurance to ensure we don’t lose financial support for the children’s metabolic medications. We have weekly conversations with our formula distribution company to ensure that the billing, supply and shipping of medical formula remains uninterrupted despite the multiple change of products.

Despite all of these challenges, our biggest struggle is getting our children to accept another formula. Simply put, no two metabolic formulas taste the same. Over the years, I’ve personally sampled every formula my children have had the opportunity to try. There are many formulas with strong chemical smells, tastes or after tastes. Others have grainy textural issues. Some, that remind me of cow-milk products, my children can’t stomach.

Our children believe and are relying on the idea that Phenex will be available again and soon. For their sake, I hope that’s accurate.