Life on PKT

Our Families and their Stories

The Nina Childs Story

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

The Clint Crews Story

Clint Crews 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. The Crews live 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 Crews 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

Jordan Grimes Story

Jordan Grimes 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

The Rachel Sota Story

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

The Sophie Scholtz Story

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

The Six Family

The Seven Family