How long have you been doing keto?
My daughter has been doing keto for 5 months.
What motivated you to start keto?
Our daughter Abigail was born at 34 weeks gestation due to an onset of Preeclampsia and HELLP Syndrome in a rural area of Utah. She was born at 4lbs 4oz, but could not keep her body temperature up, or intake enough food. We were in the hospital for the next two days and then sent home. Abby only weighed 3lbs 11oz and we did not feel it was right to be sent home, but the hospital was cold and we had better control of the environment at home so we did not contest the decision.
Over the next few months, we noticed she was a very quiet baby and did not put up too much of a fuss. Now we understand this was caused by her lack of energy. She was continuously behind milestones but would eventually catch up around the 24-month mark.
Around Abby’s 1st birthday, we made a move to South Carolina for a new job opportunity. Finding a new pediatrician was a top priority since we were still worried about how far behind she was on milestones even though we were reassured that it was most likely due to being premature. When Abby was 16 months old the pediatrician informed us about an early intervention program that South Carolina offers, we were on the waitlist until August. The different therapies offered helped Abby, but only so much with little improvement. In November 2022 the program offered genetic testing. At the appointment, the geneticist told us that Abby was not displaying any defects and they did not think there was a genetic explanation for her growth delays. We were told again that it was likely from being premature.
In December of 2022, we made another move for work and went to Mississippi where we finally got the results back from the genetic testing. It was briefly explained that Abigail has PDCD (Pyruvate Dehydrogenase Complex Deficiency). PDCD is a genetic condition in which the body can’t process carbohydrates. PDCD causes a buildup of lactic acid, seizures, developmental delays, hypotonia, and is life-threatening. 90% of children with PDCD die before the age of 4. We heard this news on a Friday afternoon, with no additional information given for almost a week. We panic-researched the disease and had very low hope with the information that was out there. Over the next few months, we fought to get her seen by doctors trying to explain the severity.
A few weeks later, Abby started on her journey with the ketogenic diet, which showed almost immediate results. She was learning new sounds, motions, and overall growing in size.
Health care has been an overall struggle due to the lack of information regarding this condition. It seems like we are having to advocate every visit for the complexity and severity of what is normally completely fine for “normal” children. To this day we are still fine-tuning Abby’s nutrition, which has become more of a medicine than food.
We check her blood sugar and ketones every other day. She does the best when she is 2.6 or higher. She is allowed 25 carbs a day and that is ever-changing depending on what her lab work shows. To us the keto diet isn’t a fad or diet, it is the only thing that will slow the progression of PDCD down to possibly extend the life of our sweet little girl. She is in daily therapies for speech, physical, and occupational.
She continues to brighten our world with her optimistic personality, you’ll never catch her without a smile even on the worst days. She is determined and intelligent and pushes through daily even though her body is failing her. Currently, there is no cure or standard treatment for this progressive illness, but hopefully one day there will be thanks to the Hope for PDCD Foundation and all of its supporters.
What benefits/successes have you experienced?
We’ve seen significant developmental improvements in my daughter.
What was the hardest part?
Getting a 2-year-old to eat keto foods.
What were the keys or top tools to your success?
We’ve been using a Keto-Mojo meter to monitor her glucose and ketones.
Did you measure your ketones and/or glucose and if so, how did that help you?
Yes, as noted above, it’s essential.
What’s your favorite keto recipe? Please provide a link if available.
Not necessarily a recipe but my daughter’s favorite keto product is Sugar-Free Marshmallows by ChocZero
