Life on PKT

Meet Our Families and Read Their Stories

Some of our families have shared their stories. Click on each patient's name and learn how Precision Ketogenic Therapy has made a difference in their lives!

Nina Childs is a 29-year-old patient and has been on Precision Ketogenic Therapy for more than 21 years!  She experienced fetal distress during birth, which resulted in a grand mal seizure and cerebral palsy.  When Nina was 17 months old and in the foster care program, her foster mom abused her by taking Nina off her meds without consulting a physician.  Nina’s great aunt, Nancy, stepped in and was given custody of Nina and started caring for her in Nancy’s home.  Nina’s doctor put her back on medication, but she continued to suffer from 30-40 seizures a day.  At the age of 2, she had a grand mal seizure that did not stop until she was in the hospital on a ventilator and given IV valium.  She went into a coma for 6-7 days and experienced brain damage, kidney and liver damage, and cortical blindness.    While she did recover, her brain was still damaged.

In 2000, Nancy met Dr. Borum, who introduced her to the PKT program, and changed Nina’s life!  With time, Nina was taken off the anti-seizure medication, she became more alert and her overall health improved.  Before PKT Nina had frequent episodes of pneumonia and bronchitis, today, sneezing and coughing make her laugh and smile.  Keto was a life-changing experience for the whole family!

Now Nina is enjoying life.  Those who are fortunate to know her describe her as one of the most giggly, sweet, and enjoyable girls to be around.  Her dad ran triathlons, and he would often run races pushing her in her wheelchair, they also participated in tag team races.   She loves meeting and greeting people at church.  She also enjoys music, watching videos, walking around the mall, and time in the pool.  Nina also likes interacting with her ketobuddies.

Nancy says there has never been a day that she has regretted putting Nina on PKT.  Initially, following PKT recipes is tough, there is a lot of measuring and weighing of ingredients.  It gets easier and now she doesn’t think about it, it becomes a part of her daily routine.

  Nancy says “I can’t imagine life without the ketogenic diet, it’s been a lifesaver. PKT has been the best thing I have ever done for my daughter.”

Author:  Emma Hammer

Editor:  Julie Barber

Meet Nina's Ketobuddy - Rutva Patel

Rachel is one of our long-time patients that has been on Precision Ketogenic Therapy (PKT) with our clinic for over 18 years!  Rachel was a full term, beautiful 8 lb. 14 oz baby with no abnormalities. At 2.5 months Rachel began having seizures and a very large benign brain tumor was found which required two surgeries. These surgeries were quite hard on little Rachel, especially with the technology of 30 years ago. After surgery, the seizures did not improve but got worse.

Rachel’s mother, Sue, researched ways to improve Rachel’s quality of life, tried many different medications for Rachel in an effort to reduce her seizures, but nothing really worked. Sue finally discovered Precision Ketogenic Therapy (PKT) and they began the diet when Rachel was 8 years old. PKT was very different 25 years ago, the diet was very harsh and difficult for Rachel since the foods often didn’t taste good or look appealing, but it was working!

Once Sue had to take Rachel off the PKT diet because she was ill with whooping cough. When Rachel began PKT again, the therapy had begun a revision to become what it is today. Meals are now more enjoyable, easier to make and customizable so that Rachel would be eating meals similar to her brothers and sisters. Rachel loves many of her PKT recipes and is always happy to try new foods, even vegetables.

Today, Rachel is very healthy, her seizures have dramatically decreased and she is on only one seizure medication a day! She loves music, being outside, watching movies, and going on vacation with her family. She goes with her family to the lake, pool, and travels everywhere with them. Rachel enjoys being in the party scene like going on cruises and celebrating big holidays with her brothers, sisters, nieces, and nephews.

Sue, is very passionate about the benefits of PKT and wanted to share their story in hopes of inspiring others. Sue has advice to those considering PKT or currently having a tough time with the therapy:

  • Start with a few recipes, easy to cook and appealing.
  • Make your grocery list, which is easy with the recipe cards, eventually it will become routine.
  • One meal at a time until it becomes routine:
    • Make breakfast, okay that’s one meal done. It wasn’t so hard, right?
    • Make lunch. See? It wasn’t hard and your child is enjoying it.
    • Make dinner. It won’t take as long to adjust as you may think, just be persistent.
  • When your child doesn’t like something, that’s okay. Try again in a few days, still don’t like it, just mark the card as a dislike and push on to the next recipe.
  • The PKT team is so helpful when it comes to taking out ingredients you don’t like and trying to add in new ones.
  • You can always prepare meals ahead of time, have them labeled so they’re easy to take out of the fridge and reheat.
  • Your child is not too complicated for PKT! Give it a try, you will look back and be so thankful that you did this!

 

Author: Kaitlyn Taylor

Editor: Julie Barber

Meet Rachel's KetoBuddy - Kaitlyn Taylor

Sophie is a 23-year-old patient and has been in Precision Ketogenic Therapy (PKT) program for almost 18 years! Janet, Sophie’s mom, experienced high blood pressure (hypertension) during pregnancy.  Complications developed and Sophie was born as an emergency at 32 weeks.   Unfortunately, several weeks after delivery it was discovered that Sophie had not had enough oxygen to her brain and suffered severe brain damage.    Janet worried as Sophie was vomiting 10-12 times a day and having constant seizures. Janet wanted a better quality of life for her daughter and knew something had to be done.

In 2003, Janet met Dr. Borum, who introduced her to the PKT program. Janet says PKT was life-changing for Sophie.  She stopped vomiting the very first day she started PKT, and the number of seizures was reduced.   Before PKT, Sophie’s life was full of chaos. Introducing PKT brought stability to her life, and her seizure status has continued to improve the longer she is on PKT.

Sophie loves to be surrounded by people, listen to music and parties!  At the end of each school year, they host a pool party with Sophie’s classmates.   Sophie and her classmates have had so much fun hanging out in the water. On her 18th birthday, they hosted a party with friends and family with a band!  There was dancing, good food, and cake.  Sophie visited with all the guests; even Dr. Borum and members of the PKT team were there to celebrate.  Her 21st birthday was another special event; a blues-themed party!  There was a band and a champagne toast for Sophie. She enjoyed a little champagne too on a toothbrush!

Because of PKT, Sophie can do things that she probably would not be able to do without PKT.  Janet is extremely thankful for the support of the PKT team and Dr. Borum. The therapy and support have allowed Sophie to live as close to normal life as possible.    Sophie gets to enjoy people doing her hair and nails, dressing up in cute outfits, and going to the beach.  Janet describes her as charming and the bravest human on this planet.

 

Janet says, “It is not always easy to know what the right thing to do is”.  She is looking to optimize Sophie’s care and quality of life. However, she believes that choosing PKT was the smartest decision to attain stability in Sophie’s life.”

Author:  Emma Hammer

Editor:  Julie Barber

Meet Sophie's KetoBuddy - Katherine Binkley

Henry is a 16-year-old patient who has been on Precision Ketogenic Therapy (PKT) with Borum Lab for 14 years.  Henry was born in April with a grade 4 intraventricular hemorrhage; doctors were hesitant about predicting his prognosis as outcomes varied.  On Christmas day, Henry’s parents   (Nicole and Matt) were concerned because they noticed him having odd repetitive movements.  They took him to the pediatrician, who referred them to Shands (UF Health); Henry had seizures.

After Henry’s diagnosis,  his days consisted of either sleeping because of the medication or having severe seizures.  Matt and Nicole’s lives also changed.  They were frustrated, never having the opportunity to know their son Henry before the seizures.  The uncontrollable seizures were terrifying, and they were tired from balancing seizures with medications and their side effects.

To find a better life for Henry, Nicole researched epilepsy treatments, which led her to the PKT at Shands.  Initially, it was unknown whether this therapy was going to be an answer for treating Henry’s condition; his doctors were concerned because, at that time, there was not much research supporting its effectiveness.  After having tried many medications and struggling with their side effects, Nicole states that the patient-oriented care provided by the Borum team made the decision worth the risk.  During the initiation phase of PKT, members of Borum Lab were with Henry every step of the way.  They ensured a far more comprehensive continuity of care than the various medical specialties where Nicole acted as Henry’s parent and medical care advocate.

Today, Henry attends High School.  He lives close to a normal life; he interacts with his brother and the family dogs.  He enjoys trips to Home Depot, and his favorite section is lumber; Nicole laughs when she recalls all the different pieces of wood he brings home.

Nicole says, “Looking back 16 years, I would not have believed that Henry would be doing the things he is doing today.  I am no longer burdened with the pressing worries of Henry’s epilepsy; the relief is a tremendous gift.  I wish that I had found out about PKT a lot sooner.  There is a tradeoff; however, the benefits exceed the effort required.”

Author:  Ila Bagheri

Editor:  Julie Barber

Meet Henry's KetoBuddy - Ila Bagheri

Rhys is 17 years old and has been on PKT for 10 years. Rhys was born at 34 weeks and weighed only 2 pounds. When he was 10 months old, he was hospitalized with the shaken baby syndrome.  He had a bilateral retinal hemorrhage, fractures, and severe bleeding in his brain.  This resulted in severe disabilities.  He then went into the medical foster care system.

Don and Nancy became Rhys ’parents when he was 3 years old. They recall meeting Rhys for the first time; He was in a wheelchair, unable to sit on his own, blind, nonverbal, diapered, and adorable.  He required a lot of medications, therapies, treatments, and love.

He was spoon-fed puréed foods and thickened liquids. All of his meds were given in puréed food.  He struggled with vomiting and the fear of aspiration.  He clearly did not enjoy his feedings.  While he was on 4 anti-seizure medications, he still experienced frequent breakthrough seizures.

Rhys was adopted by Don and Nancy and it was the best decision for the whole family!

The team at UF (University of Florida) Health helped them realize that a g-tube was needed.  He was then started on Precision Ketogenic Therapy (PKT) with a g-tube. This decision was a game-changer! Feeding Rhys and giving him medications is much less stressful for Rhys.  His quality of life, as well as the rest of the family’s improved! His seizures were much better controlled, and his medications were reduced.   He now has more floor time and figured out how to roll back and forth, creep all over the house and sit on his knees.

Today, Rhys is happy. He is more mobile and verbal. He is noisy, able to say a few words, He claps, gives high fives, and laughs when his daddy laughs. His life is very scheduled, they have been able to decrease his meds, and he is healthy. He goes to Prescribed Pediatric Extended Care (PPEC) school, where he has made a friend and enjoys throwing a ball. Most importantly, there is a significant decrease in 911 and ER visits.

Don says, “What is quality of life? Expectations are different for everyone. Rhys enjoys throwing the special toy made for him by putting two frisbees together. He enjoys crawling on the floor and opening and closing doors. I ask him, ‘Are you ready for a brand-new day?’ and Rhys says, ‘Yea’”.

Nancy says, “PKT is different than giving a simple medication; it is prescribed specifically for Rhys.  The PKT team works with us and his doctor to provide the best nutrition and seizure control. It is not any more time-consuming than other tube-fed formulas, and with the help of the PKT team, it is now routine.”

Don and Nancy feel so blessed to have Rhys in their family.  They all love him for who he is. It was overwhelming; he was hurt, and they wanted him safe. Just like all families, parents love their children for who they are and just do what needs to be done. They also had the PKT team along the way!

Author: Julie Barber

Editor:  Mitch Faloona

Meet Rhys' KetoBuddy - Matias Capurro

Click on the image to enlarge.

Jordan is a 33-year-old patient who has been on the ketogenic diet for roughly 27 years and on PKT with our team for over 9 years. Jordan was born with a lack of oxygen, which slowed her development, yet she made good progress until she was given the DPT vaccine at 18 months. Shortly after, Jordan experienced grand mal seizures, turned blue, had to be resuscitated, and had a stroke. Her mother, Shawn, had a decision to make and, against her neurologist's recommendation to institutionalize her baby, she kept her home and cared for her.

Shawn was challenged for the next 5 years of Jordan’s life-giving her daughter 22 pills a day, watching her have seizure after seizure, and making frequent trips to the hospital. Determined to improve Jordan’s quality of life, Shawn started doing research and found a video from John Hopkins University about the ketogenic diet. After doing some reading on her own, she proposed the therapy to Jordan’s doctor, who initially rejected it. Jordan’s situation was declining, so Shawn continued to pursue putting her on the ketogenic diet until finally, a doctor agreed.

Jordan’s condition improved beyond expectations! Her seizures immediately decreased by 50%, and she was almost seizure-free within a year. Her medication was reduced from 22 pills a day to 1. An unexpected and most significant benefit was that Jordan “woke up,” no longer under heavy medication; she started experiencing life with her family!

Today, 27 years later, Jordan is enjoying an active and social life while continuing ketogenic therapy. She loves swimming, horseback therapy, and playing music. She enjoys traveling, going to the beach, and attending dances. Most important are her relationships with her family, the people around her, and even her service dog. When Shawn attempts to wean her daughter off the diet, Jordan experiences a spike in seizures, so PKT is a lifelong solution for her.

Shawn was a champion for her daughter. She experienced many obstacles until she happened upon a solution and wants to share her story so that others may benefit from what she has learned. She wants to encourage parents to consider all their options and that some health-related conditions can be treated not only by medicine but by diet as well. 

“PKT has been the best thing for Jordan, and I wouldn’t change any of it. The diet is easier than spending countless hours in the hospital and resorting to more medications and even surgical options. Here we are, Jordan is 33 and still on the diet.” – Shawn Lessard (Mom).

Author:  Renata Volonterio

Editor:  Julie Barber

Meet Jordan's Ketobuddy - Renata Volonterio

Siena update:  Siena climbing and reaching for her favorite pop up book

Mom Says "With ALG13 CDG it’s a miracle that she can do the things that she does. Now she surprises us by reaching up high for her favorite books."

Siena is a 6-year-old patient who has been on Precision Ketogenic Therapy (PKT) with our team for 5 years. At a very young age and for reasons unknown at the time, Siena was suffering. She had about 10 seizures a day, could not walk, was unhappy, cried most of the time, and at moments appeared to be unaware of her surroundings. Her mother, Keszia, described Siena as “zombie-like” due to the antiseizure medications. It seemed like whenever an increase in medications were prescribed, Siena’s
condition declined even further.

Siena’s family traveled to Boston for help and PKT was suggested as an alternative to extra medication.  When Siena was 22 months old, Keszia met Dr. Borum, and PKT was “initiated.” Keszia described initiation as challenging, especially having to measure and make meals that Siena liked. Shortly after starting PKT, Siena was diagnosed with a rare genetic mutation; only 10 other confirmed cases globally.  The best way to treat the disease was to treat the symptoms, and they were already doing just that with PKT!

The positive effects of PKT started quickly after being initiated on a Monday, Siena was seizure-free by Friday and within two weeks, she no longer had to take one of her antiseizure medications. Keszia noticed another benefit; her daughter was “slowly waking up” from the zombie-like state caused by all the medications. Then one year later, Siena was no longer taking any antiseizure medications!

Today, Siena is a very sweet, happy, determined, and active young girl. She communicates using an electronic device and can better interact with her parents. Siena has a little sister who she loves spending time with; they go to school together and sit side-by-side. Siena’s favorite activities include running, skipping, and dancing. She loves the water, and her dad takes her paddleboarding on the river near their house!

Over time, meal preparation has become less challenging. The family works as a team with Siena’s grandma making solid meals and Siena’s father making liquid meals. Siena has her own freezer!

PKT has improved Siena’s and her family’s life drastically, and Keszia expresses that she would not know what she would do without the program.

Keszia says “It is not like a commercial keto diet. It’s all about precision. Everything is to be measured accurately down to a 10th of a gram. It is a lifetime commitment, and you may reduce the amount of medication given or possibly be able to wean off medication completely “

Author: Bianca Barroso

Editor: Julie Barber

Click on the image to enlarge.

Kira Tavill is a 4-and-a-half-year-old patient who started Precision Ketogenic Therapy (PKT) when she was one year old. After a normal pregnancy and delivery, nothing unusual occurred until Kira was 6 months old with some developmental issues. By 9 months, her development was atypical, and she began having seizures. During the first episode, Kira had repeated seizures until she stopped breathing and turned blue. She was admitted to the PICU for several days. When she was 11 months old, Kira was diagnosed with epilepsy; her seizure activity and medications increased. Kira was hospitalized dozens of times, with one visit lasting 6 weeks. Olivia and Stephanie, Kira’s parents, centered their lives around Kira’s care, at times taking shifts day and night to keep their baby alive.

When Kira was one year old and in the hospital, and with no seizure control from any of the medications she tried, her physician suggested Precision Ketogenic Therapy. Olivia met with Dr. Borum, and the decision was made to start Kira on PKT. Olivia shares that getting into the habit and planning in advance was the hardest part. They now have a routine and made a “keto-station” in the kitchen to prepare meals based on special recipes prepared specifically for Kira by the PKT KetoBuddy Team. As the days went by and Kira’s ketone levels increased, the amount and intensity of the seizures decreased! It was not uncommon for Kira to have dozens of seizures in a day, but now she can go months without a seizure, and they are minor when she does have them. She has been weaned off all her meds except for one! She has not had a hospital visit for several years. Best of all, she and her family are enjoying life together.

Today, Kira is an adventurer, a loving and expressive daughter, and a great big sister. Kira loves the outdoors, riding her special bike, playing at the beach, and driving her adaptive car around the block. For her 3rd birthday, they went to Disney, and Kira, the adventurer, loved the roller coaster the best! Kira is so sweet, full of hugs and kisses to her parents. While she does not verbalize what she is thinking, she lets them know what is on her mind. Kira loves her baby sister and loves spending time with her, though still gentle and cautious with her. Olivia says that Kira is looking forward to being more playful with her sister in the future.

Olivia says “ –Do your research first; PKT is not for everyone. Understand what is involved. Ask yourself why you think PKT is best for your child. If you have not found seizure control through medications, PKT might be your answer.

Stephanie says, -“The best part of PKT is seizure control. It changed our lives! It is the best thing that has happened!”

Author: Ha Nguyen
Editor: Julie Barber

Meet Kira's KetoBuddy - Rutva Patel

Clint is a 38-year-old patient. He has been on Precision Ketogenic Therapy for over three years and has seen improvements in his medical condition. During delivery, Clint experienced arrested labor, causing brain injury and low muscle tone. Although he previously had an issue with recurrent pneumonia, the decision to switch his feedings exclusively to his G-tube helped reduce his aspirating and subsequently reduced his incidents of pneumonia.

Clint has many hobbies. He likes watching action movies and enjoys gardening. His family lives on a farm with many animals; Clint enjoys golf cart rides with his family. His parents, Marta and John, have an inspiring, positive outlook on Clint’s situation. They have explored a variety of treatment options for Clint, including participation in the Philadelphia Program and various other therapies. Marta and John are advocates for trying different treatment options, saying that ‘If you don’t try, you don’t know.’ Their commitment to Clint is strong and un-wavered by the obstacles that have arisen. Clint is an intelligent young man, and his parents treat him as such. Every day, his Mom and Dad tell him how much they love him.

Marta and John’s advice to others is never to doubt the intelligence of a patient, even if they are not always able to verbalize.

Marta says, “We truly appreciate all the support we have received from the Precision Ketogenic Team”

Author: Julie Barber

Meet Clint's KetoBuddy - Nirali Patel

Javier is 28-years old and has been on PKT for almost a year. At 6 months old, Javier experienced a reaction to his third set of childhood vaccines, resulting in hundreds of seizures per day. He was prescribed anticonvulsants and tested for metabolic disorders, but no diagnosis could be determined, and he was given 6 months to live. After surviving those 6 months, a two-year prognosis was given; his family was in desperate search of a solution. When Javier was two years old, his mom, Amparo, found that a ketogenic diet can benefit children suffering from frequent seizures. The physicians decided not to pursue a dietary therapy and ordered a 24-hour EEG, which showed that Javier’s seizure patterns were consistent with Lennox-Gastaut syndrome. He was weaned off the anticonvulsants and prescribed Depakote.

Javier had autism, cortical blindness, was wheelchair-bound, and was nonverbal. After starting Depakote, Javier began standing up, walking, talking, and showing an incredible interest in learning. He loved listening to music of all genres and learning about classical composers. Javier loves languages, he is fluent in Spanish and English and dabbles in French, Italian and German.  Javier became very social; he loved spending time with his family, school and playing basketball and t-ball. Fittingly, he earned the nickname ‘Happy Javi.’

Four years ago, Javier suddenly experienced high blood pressure, hyperactivity, anxiety, and a Parkinsonian gate. He was taken to the hospital and found to have developed liver toxicity from the Depakote. As Javier was slowly taken off Depakote, his symptoms worsened, including self-talking, sleeplessness, and focal seizures. Amparo remembers how silent the house was; sounds like the TV or the phone ringing were more than he could handle. She desperately searched for an explanation; a physician suggested repeating genetic testing. The test results showed Javier had a GLUT-1 deficiency, a genetic disorder that prevents the brain from utilizing glucose adequately.

After Javier’s GLUT-1 diagnosis, the family found Dr. Borum and the Precision Ketogenic Therapy (PKT) program. It was not easy for Javier or his family at the beginning. His symptoms were so severe that Mom had to wrap her arms and legs around him while Dad cooled him down with ice packs to prevent him from overheating. Mom was terrified of the scale and weighing every food item precisely. She was also worried about how well Javier would handle the transition and that he would be able to tolerate the taste and textures of the food because of his autism.

Today, Javier still experiences periods of hyperactivity, but his symptoms have improved. Amparo no longer must wrap her arms and legs around him to calm him down. She says it is like “night and day.” Javier has good weeks where he talks, communicates, remembers things, and makes jokes. He also listens to music, sleeps well, and shows independence. Mom recently noticed that Javier had almost completely stopped self-talking! He enjoys his food, especially his ‘PKT Milk’ and cheese. Mom has become more confident in cooking- she even knows some of the measurements by heart! She has taught her husband and Javier’s brother how to make them too.

Javier is not free of health issues- he still has some bad days. However, his improvements show that his memory, personality, and love for his family remain strong. The family was told many times over the years that they would lose him, but today, they are grateful that PKT is helping bring their ‘Happy Javi’ back!

Author: Harlen Kahlon

Editor: Julie Barber

Meet Javier's KetoBuddy - Harleen Kahlon