We have 5 children and 3 of them have Phenylketonuria and are on Phenex 2. My 17 and 14 year olds have only ever been in Phenex 2 and have sampled other formulas over the years and have not liked them. My 8yr old has been on Phenex 2 since we adopted him from China 5 years ago and he loves his formula and asks for it! We are nearing the end of our supply and have been advised we may need to switch formulas due to the hold on production and shipping of our Phenex 2. This terrifies me as a mom of 3 PKUers. My older 2 already struggle with consuming the Phenex 2 that they have been on since birth and the thought of having them try new formulas that they have already tried in the past and know they do not like. They are already on such a strict food diet and to have to take the one constant from them shouldn’t happen. My youngest also has autism and new things and changes are not easy for him so the idea of taking something from him that he needs daily and that he actually likes and having to make him take something he doesn’t like is heartbreaking. I have been dreading this since I heard about the hold on production and shipping at the Abbott plant. I do not understand why the products that aren’t affected by the recall cannot be shipped. This hold has also caused shortages in other metabolic formula companies as there are now more patients scrambling to get formula for their children. So even if we happen to find one my children Will tolerate there is no guarantee it will be in stock leaving us scrambling to find another new formula they can stomach and then hoping and praying that that 3rd or 4th option isn’t on back order for the same reason.
Please allow the metabolic formulas that are not affected but the recall to be made and shipped to families like mine that need them and cannot just go to the store and buy formula for our children to sample. We have to have a dietitian order for us, get insurance approval (if insurance will even cover it), or pay hundreds/thousands out of pocket just to see if our children will even be able to stomach the change.