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Mary E. | Illinois | Patient Age: 10 & 4 | Disorder: PKU

I have 2 boys with PKU 10 & 4. It has been a nightmare. Our dietitian and formula rep have been doing everything they possibly can. They have sent us multiple kinds of other formula to try, but my kiddos hate it. Our formula trial has ended with puking or not drinking any formula. This is leading us to night terrors, emotional stress, lots of crying, and headaches. I never imagined in my life of being their mom I would be so frustrated with our situation. It’s absolutely heart wrenching not knowing what is going to happen to our children. It’s only been a week and the struggles and day to day have been rough on all of us. My 10 yr old is doing great by being a good sport and forcing down a formula he truly dislikes but my 4 yr old is another story. My 4 yr old doesn’t understand the outcome or why he needs to drink something he dislikes very much. It is so important that this does not build up on their brain and cause us worse issues. I pray we can get some formula soon.