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Jessica R. | Tennessee | Patient Age: 3 | Disorder: SCOT deficiency

Our 3 year old has a rare metabolic disorder, so rare in fact there are only around 20 known people worldwide to share this disorder. In order to keep her disorder in check (and prevent neurological damage), she must limit fasting times and keep to a strict lower protein diet.

In addition to SCOT disorder, our daughter has dysphasia caused by a laryngeal cleft. Part of her instinctual coping mechanism to keep her airway safe was to limit foods. With a surgery to repair and intense feeding therapy, she has branched out, she is accepting more foods.

However, her lower protein milk recipe of Similac Advanced coupled with pro-phree gave her the nutrition she needed to grow and thrive.

With the original recall of Similac advanced, we had family members searching different states to find some Similac advanced not affected by the recall to tide her over. With a metabolic disorder with unique nutritional needs coupled with sensory issues related to food, it is not as simple as grabbing whatever can of formula was handy. We worked over several weeks to slowly transitioned her from Similac advanced to a different formula.

In the middle of that process, we were told that Pro-phree was ALSO affected. We are now beginning the slow process to switch from pro-phree to duo-cal. This has taken many calculations on the part of our metabolic Dietition, and slow tiny steps so our daughter will accept it.

It has been very stressful.