Phenylketonuria

Claire C. | Illinois | Patient Age: 33 | Disorder: PKU

I have started to ration my formula which means I am not getting the protein equivalent I need, so my body begins to break down… Read More »Claire C. | Illinois | Patient Age: 33 | Disorder: PKU

David V. | Virginia | Patient Age: 63 | Disorder: PKU

Obtaining my Formula is crucial so that I can maintain a satisfactory quality of life. I was working at a retail store and I made… Read More »David V. | Virginia | Patient Age: 63 | Disorder: PKU

Jennifer P. | Maryland | Patient Age: 48 | Disorder: Phenylketonuria (PKU)

The temporary loss of Abbott products have resulted in a broken continuum of care for the clinical management of many inborn errors of metabolism (IEM),… Read More »Jennifer P. | Maryland | Patient Age: 48 | Disorder: Phenylketonuria (PKU)

Patty V. | Missouri | Patient Age: 20 | Disorder: PKU

We are blessed my son is doing fantastic with his PKU. Not all people do well managing it. Jack is a 20 year old college… Read More »Patty V. | Missouri | Patient Age: 20 | Disorder: PKU

Kylee G. | Michigan | Patient Age: 34 | Disorder: PKU

To the best of my knowledge my metabolic formula is not one manufactured by Abbott, (it’s a Nutricia product) however, I believe the shortage has… Read More »Kylee G. | Michigan | Patient Age: 34 | Disorder: PKU

Tiara B. | California | Patient Age: 17 | Disorder: PKU

Tiara is my 17 year-old daughter that uses Phenex since she was born. She tried many MANY other formulas throughout the years, but she loves… Read More »Tiara B. | California | Patient Age: 17 | Disorder: PKU

Aimee F. | New York | Patient Age: 9 | Disorder: PKU

We are one of the lucky ones… We were cutting it too close every month with the amount of my daughter’s formula that was originally… Read More »Aimee F. | New York | Patient Age: 9 | Disorder: PKU

Maridith B. | Florida | Patient Age: 21 | Disorder: PKU

I am Maridith Baker and I have PKU. I have been on Phenex-2 since I was only a couple of days old. My current prescription… Read More »Maridith B. | Florida | Patient Age: 21 | Disorder: PKU

Ariadne E. | Illinois | Patient Age: 25 | Disorder: PKU

While I don’t use Abbott products, the shut down has caused the people that do to switch formulas. Now my usual formula is backordered and… Read More »Ariadne E. | Illinois | Patient Age: 25 | Disorder: PKU

Lauren S. | Ohio | Patient Age: 13 | Disorder: PKU

My 13 year old PKUer has been on this same product for a number of years. In the past, it has been very difficult to… Read More »Lauren S. | Ohio | Patient Age: 13 | Disorder: PKU

Karin C. | California | Patient Age: 14 | Disorder: Phenylketonuria

My son has been on Phenex-2 since he was diagnosed with phenylketonuria (PKU) at 7 days old. It has been his most consistent and most… Read More »Karin C. | California | Patient Age: 14 | Disorder: Phenylketonuria

Taylor P. | California | Patient Age: 2 | Disorder: Phenylketonuria (PKU)

We are not on Abbott formula, our supplier is a different company. However, we were also impacted by the shortage, as so many Abbott Medical… Read More »Taylor P. | California | Patient Age: 2 | Disorder: Phenylketonuria (PKU)

Stephanie F. | California | Patient Age: 3 | Disorder: PKU

Since the shut down of the Abbott facility we have been struggling to transition our toddler to a new formula. She has not liked the… Read More »Stephanie F. | California | Patient Age: 3 | Disorder: PKU

Melissa S. | Maryland | Patient Age: 5 | Disorder: PKU

The formula shortage is creeping towards us. We are waiting for over half of her monthly order to come in and one of the boxes… Read More »Melissa S. | Maryland | Patient Age: 5 | Disorder: PKU

Thora J. | New Jersey | Patient Age: 11 | Disorder: PKU

The temporary loss of Abbott products has significantly impacted our family and we have been unable to transition to another product until the issue has… Read More »Thora J. | New Jersey | Patient Age: 11 | Disorder: PKU

Jessica E. | Michigan | Patient Age: 7 | Disorder: PKU

My daughter has drank Phenex since 4 days old. She has tried other drinks to try an offer a flavor change for her. She only… Read More »Jessica E. | Michigan | Patient Age: 7 | Disorder: PKU

Audra H. | New York | Patient Age: 10 months | Disorder: PKU

My son was forced to switch from Phenex1 to Periflex Early Years due to the contamination issue at the Abbott facilities. It is imperative that… Read More »Audra H. | New York | Patient Age: 10 months | Disorder: PKU

Julie P. | Arizona | Patient Age: 13 | Disorder: PKU

My child has been on the same formula since birth. We spent 2 1/2 weeks trying samples to transition to another formula. He hated everything… Read More »Julie P. | Arizona | Patient Age: 13 | Disorder: PKU

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… Read More »Mary E. | Illinois | Patient Age: 10 & 4 | Disorder: PKU

Kala M. | Wyoming | Patient Age: 2 year old | Disorder: PKU

We do not use any of the Abbott formulas however the trickle effect of the situation is now directly effecting our ability to get what… Read More »Kala M. | Wyoming | Patient Age: 2 year old | Disorder: PKU

Karen M. | Georgia | Patient Ages: 21 and 23 | Disorder: PKU & Autism

We will begin transitioning to another product in the next few months. My 21 year old son has autism in addition to PKU. All change… Read More »Karen M. | Georgia | Patient Ages: 21 and 23 | Disorder: PKU & Autism

Amy K. | Illinois | Patient Ages: 16, 12, 11 | Disorder: PKU

When Abbott changed Phenex 2 a year and a half ago, we sampled almost every other formula out there. My children could not drink any… Read More »Amy K. | Illinois | Patient Ages: 16, 12, 11 | Disorder: PKU

Donna L. | New York | Patient Age: 21 | Disorder: PKU

My son who has PKU is about to face a more difficult situation with the loss of the one formula he tolerates very well. To… Read More »Donna L. | New York | Patient Age: 21 | Disorder: PKU

Claire O. | Utah | Patient Age: 15 | Disorder: PKU

I am a teenager and I have taken Phenex every day of my entire life. I have difficulty drinking any other formula because they all… Read More »Claire O. | Utah | Patient Age: 15 | Disorder: PKU

Jessica T. | Maine | Patient Age: 24 | Disorder: PKU

I am 24 years old and have been drinking Phenex2 my whole life. I tried to switch formulas many times before, only for convenience reasons… Read More »Jessica T. | Maine | Patient Age: 24 | Disorder: PKU

Lisa F. | Maryland | Patient Age: 5 | Disorder: PKU

My granddaughter has PKU and she needs her formula to be healthy. Please help!

Charity K. | Oklahoma | Patient Age: 16 | Disorder: PKU

My daughter is 16 and has PKU. She has been on Phenex and Phenex 2 formula her whole life. We have been unable to find… Read More »Charity K. | Oklahoma | Patient Age: 16 | Disorder: PKU

Jessica K. | North Carolina | Patient Age: 6 | Disorder: PKU

We had to switch from Phenex 2 to Periflex Advanced. It was super stressful because even switching was hard due to the other companies being… Read More »Jessica K. | North Carolina | Patient Age: 6 | Disorder: PKU

Tracie R. | Florida | Patient Ages: 17, 14 & 8 | Disorder: PKU

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… Read More »Tracie R. | Florida | Patient Ages: 17, 14 & 8 | Disorder: PKU

Kristi S. | Arizona | Patient Ages: 39, 18, 13, 9, 8 | Disorder: PKU

We have had to switch to an alternate formula for ProPhree Calorie supplement by another manufacturer, but the main source of our nutrition comes from… Read More »Kristi S. | Arizona | Patient Ages: 39, 18, 13, 9, 8 | Disorder: PKU

Morgan M. | New York | Patient Ages: 11 and 12 | Disorder: PKU

The past month of formula shortage has been incredibly stressful for my family. Like many people with PKU, finding a formula that was palatable and… Read More »Morgan M. | New York | Patient Ages: 11 and 12 | Disorder: PKU

Beth B. | Illinois | Patient Age: 20 | Disorder: PKU

My daughter has been drinking Phenex 2 for all 20 years of her life. The extended Abbott hold has been extremely stressful for our whole… Read More »Beth B. | Illinois | Patient Age: 20 | Disorder: PKU

Jessica B. | Wyoming | Patient Age: 5 | Disorder: PKU

My daughter ran out of metabolic formula and we have been able to find ANY supplier that has her formula in stock. We have been… Read More »Jessica B. | Wyoming | Patient Age: 5 | Disorder: PKU

Julie T. | Alabama | Patient Age: 10 | Disorder: PKU

The loss of access to Phenex-2 has caused immense stress on our family, on top of an already difficult to manage disorder. We are in… Read More »Julie T. | Alabama | Patient Age: 10 | Disorder: PKU

AMY B. | Louisiana | Patient Age: 16 | Disorder: PKU

I am hopeful this will be rectified immediately as this is my child’s medicine to function and feel good daily. This is so important and… Read More »AMY B. | Louisiana | Patient Age: 16 | Disorder: PKU

Rebecca J. | North Carolina | Patient Age: 3 | Disorder: PKU

This has been a huge challenge! We have not been able to transition to a new product and are so thankful that we have enough… Read More »Rebecca J. | North Carolina | Patient Age: 3 | Disorder: PKU

Brandi W. | Texas | Patient Age: almost 15 | Disorder: PKU

We are beyond stressed with this unnecessary disruption of our daughter’s lifeline. She has been on Phenex since May 1997, the month she was born.… Read More »Brandi W. | Texas | Patient Age: almost 15 | Disorder: PKU

Taryn F. | Illinois | Patient Age: 4 years old | Disorder: PKU

We do not use Abbot products, but we are now being told his Nutricia Phenylade GMP Ready is on back order with no date for… Read More »Taryn F. | Illinois | Patient Age: 4 years old | Disorder: PKU

Jenny P. | Ohio | Patient Age: 15 | Disorder: PKU

When we heard that we weren’t going to be able to get our daughter’s Phenex-2 because of the shutdown, we immediately panicked. She has been… Read More »Jenny P. | Ohio | Patient Age: 15 | Disorder: PKU

Jason M. | Texas | Patient Age: 8 | Disorder: Phenylketonuria

Thankfully we had some spare Phenex on hand so that we could immediately order the competing Periflex and phase our daughter over to it. This… Read More »Jason M. | Texas | Patient Age: 8 | Disorder: Phenylketonuria

Heidi M. | Utah | Patient Age: 14 | Disorder: PKU

We are STRUGGLING. Being a growing teenage boy with PKU is hard enough as it is. Keeping him full is nearly impossible. He has been… Read More »Heidi M. | Utah | Patient Age: 14 | Disorder: PKU

Jennifer C. | Oregon | Patient Age: 46 | Disorder: PKU

I don’t use a product made by Abbott. However, the Abbott shut down has affected my ability to obtain the metabolic food product I am… Read More »Jennifer C. | Oregon | Patient Age: 46 | Disorder: PKU

Jessica C. | California | Patient Ages: 11, and 9 | Disorder: PKU

We are not coping. My children have used Phenex since they were newborns. It’s all they know. Metabolic formulas can be very off putting in… Read More »Jessica C. | California | Patient Ages: 11, and 9 | Disorder: PKU

Amy M. | Alabama | Patient Age: 18 | Disorder: PKU

My son is almost done with his senior year of high school and is suddenly finding himself unable to have access to the lifesaving formula… Read More »Amy M. | Alabama | Patient Age: 18 | Disorder: PKU

Rachel F. | South Carolina | Patient Age: 6 | Disorder: PKU

We are struggling right now. This is the only thing our daughter knows. We have been required to try to switch however those formulas are… Read More »Rachel F. | South Carolina | Patient Age: 6 | Disorder: PKU

Les C. | Colorado | Patient Age: 43 | Disorder: PKU

Even though I do not use Abbott products, the Abbott hold is affecting me. Due to other patients seeking alternative products, there has been higher… Read More »Les C. | Colorado | Patient Age: 43 | Disorder: PKU

Karie M. | Florida | Patient Age: 10 & 13 | Disorder: Phenylketonuria (PKU)

Our son and daughter rely on metabolic formula to maintain their daily nutritional needs and developmental support. Abbott’s Phenex formula has been their medical formula… Read More »Karie M. | Florida | Patient Age: 10 & 13 | Disorder: Phenylketonuria (PKU)

Janelle M. | Massachusetts | Patient Age: 31 | Disorder: Phenylketonuria

I am a Canadian woman from Nova Scotia with classical Phenylketonuria, resulting in a severely restricted low pheneylalanine diet. Phenex-2 has been the metabolic formula… Read More »Janelle M. | Massachusetts | Patient Age: 31 | Disorder: Phenylketonuria

BRITTANY M. | Texas | Patient Age: 8 | Disorder: Phenylketonuria

This is absolutely heinous that a medical food company caused the deaths of infants due to poor hygiene practices. My daughter needs the Phenex 2… Read More »BRITTANY M. | Texas | Patient Age: 8 | Disorder: Phenylketonuria