Our son is 20, just turned last week. He was diagnosed with MSUD(Maple Syrup Urine Disease) when he was 12 days old.
He is Classic MSUD, which is by far the most serious of the 3 types.
He has been on Ketonex 2 for many, many years, and prior to that, he was in Ketonex 1.
When we learned of the recall of the infant formula, and then that the metabolic formula was being put on hold also, it struck panic immediately. As a lot of patients with metabolic disorders, he is very restricted in what he can eat etc. He is used to the Ketonex, the taste, the smell….everything. We have always had a hard time transitioning to anything new. I don’t know how many people understand how scary it is to have your child in the hospital multiple times a year, their entire life, due to basically any type of illness or the fact that they simply don’t drink enough of the formula that is life-saving. It’s hard to put into words! Simply suggesting that they just switch what they’re drinking is not that simple.
This has been a huge stress in our lives. We are watching the news everyday for any kind of update, and reaching out to anyone we can think of to help.