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
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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
Delana L. | Florida | Patient Age: 12 | Disorder: EOE
My grandson needs this life sustaining formula as he has allergies to food -because of EOE Please help.
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
Megan B. | Texas | Health Care Provider
I am a health care provider (dietitian) with a metabolics clinic in Austin, Texas. This formula shortage has been a nightmare for our patients, their… Read More »Megan B. | Texas | Health Care Provider
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
Shannon H. | Louisiana | Patient Age: 12 | Disorder: Tyrosinemia Type 1
My daughter has been on Tyrex for her entire life. We have been unable to find another product that she likes. This has caused a… Read More »Shannon H. | Louisiana | Patient Age: 12 | Disorder: Tyrosinemia Type 1
Jordann C. | California | Patient Age: 9 | Disorder: MSUD
My 9-year-old son, Carter, loves his Ketonex-2. He is a very active kid and routinely asks for extra batches of his metabolic formula. Since we… Read More »Jordann C. | California | Patient Age: 9 | Disorder: MSUD
Katie M. | Texas | Patient Age: 33 | Disorder: Tyrosinemia type 3
I am trying to get pregnant and need this formula for my health as well as my child. Low protein diets alone are not enough.… Read More »Katie M. | Texas | Patient Age: 33 | Disorder: Tyrosinemia type 3
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
Anna D. | Kansas | Patient Ages: 4 and 6 | Disorder: Propionic Acidemia
The shutdown has made us very anxious. Our DME, thankfully has been well stocked and we have not had to switch over yet, but we… Read More »Anna D. | Kansas | Patient Ages: 4 and 6 | Disorder: Propionic Acidemia
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.… Read More »Jessica R. | Tennessee | Patient Age: 3 | Disorder: SCOT deficiency
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
Jillian B. | New York | Patient Age: 5 | Disorder: Tyrosinemia Type 1
Our daughter is 5 and drinks Tyrex for her nutrition. This is an essential part of her diet and can’t simply be replaced by a… Read More »Jillian B. | New York | Patient Age: 5 | Disorder: Tyrosinemia Type 1
Sana A. | Texas | Patient Age: 3 | Disorder: Tyrosinimia type 1
My daughter likes Tyrex 2. She tried a lot stuff but she doesn’t like it .. we need Tyrex 2 back. For us metabolic formula… Read More »Sana A. | Texas | Patient Age: 3 | Disorder: Tyrosinimia type 1
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
Ed J. | New York | Patient Age: 3 years old | Disorder: Homocysturnia
We can’t transition to another formula. My daughter has sensory processing disorder affects her eating. She will only drink her formula out of a bottle… Read More »Ed J. | New York | Patient Age: 3 years old | Disorder: Homocysturnia
Isabella O. | California | Patient Age: 7 | Disorder: Arginosuccinic Aciduria
My daughter’s metabolic disorder is very rare and she is completely Gtube which means she doesn’t eat anything my mouth. She also struggles with new… Read More »Isabella O. | California | Patient Age: 7 | Disorder: Arginosuccinic Aciduria
Jasmine Y. | Washington | Patient Age: 5 | Disorder: Hypermethioninemia
My daughter drinks Hominex everyday. She calls it her “special milk” and she really enjoys it. Her dietician has advised us that we will need… Read More »Jasmine Y. | Washington | Patient Age: 5 | Disorder: Hypermethioninemia
Kelly M. | New York | Patient Age: 26 | Disorder: Maple Syrup Urine Disease
My son is 26 years old and has a lot of struggles due to his metabolic disease, with several hospitalizations over the years. It’s hard… Read More »Kelly M. | New York | Patient Age: 26 | Disorder: Maple Syrup Urine Disease
Mary M. | Pennsylvania | Patient Age: 43 | Disorder: MSUD
When this all started in March 2022, we had plenty of Complex for the month of April, or so we thought. We are down to… Read More »Mary M. | Pennsylvania | Patient Age: 43 | Disorder: MSUD
Jany B. | Florida | Patient Age: 6 | Disorder: MSUD
After my son’s diagnosis, not having his formula available has been the scariest feeling ever. My baby cannot go a day without it or else… Read More »Jany B. | Florida | Patient Age: 6 | Disorder: MSUD
Amy J. | Ohio | Patient Age: 20 | Disorder: MSUD
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… Read More »Amy J. | Ohio | Patient Age: 20 | Disorder: MSUD
Karen D. | New York | Patient Age: 27 | Disorder: MSUD
My daughter has been consuming 1 quart of Ketonex 2 every day since early childhood. She is accustomed to the taste. She has tried other… Read More »Karen D. | New York | Patient Age: 27 | Disorder: MSUD
Anne F. | Pennsylvania | Patient Age: 47 | Disorder: MSUD
Our son is 47 years old with disabilities due to a late diagnosis. He has never used anything but MSUD Complex. He has severe anxiety… Read More »Anne F. | Pennsylvania | Patient Age: 47 | Disorder: MSUD
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
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
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
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)
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
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
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
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
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
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