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Tiffany C. | New Mexico | Patient Age: 10 | Disorder: GI issues NPO g-tube fed due to aspiration

This has been horrible. Since late February we have been scrambling to find something my son will tolerate. He is g-tube fed NPO (nothing by mouth) due to aspiration. He survived three brainstem surgeries and relies on metabolic formulas such as Elecare Junior as his only source of nutrition. The problem is there are not many alternatives that he tolerates and then when he does tolerate one the DME is out. We had to switch him from Elecare Junior to Puramino Junior to Alfamino Junior to Neocate Junior to Neocate splash and back to Alfamino Junior…he is currently on Alfamino Junior, which he does not tolerate. Everyone is out and has been for two months. When I do find them they are heavily price gouged. My son gets one can per day of the powder and 7 cans a day of the splash. Therefore, the three and four hundred dollar cases they are selling online would last me about four days..not even a full week..A few days ago i spent $90 on amazon for one can…so that’s good for one day…and a day or two ago i bought a can off market-baby for $70 which lasts him a day…who in the world is able to spend $100 a day for food? I’m a single unemployed mother caring for her medically fragile child, not a rich celebrity. Everything people tells us to do I have already done. There is nothing left that I can do. I even sent his dietician the form for Abbott but she didn’t fill it out and send it because she said none of the options were appropriate substitutes for the one he is on…the fact that nobody has anything is terrifying he can’t have anything else and there was no safety net for if something like this happened..So the real question is what if it happens again? Covid was bad enough for my family, he also has a trach leaving him more vulnerable to any illness because he has an open airway..and now this..i am so stressed everyday worrying about “will he have food in a week?” “will he tolerate it?” “will he lose too much weight because he doesn’t tolerate it?” Nobody is addressing the issue of price gouging either which makes me incredibly angry.