In June 2019, right after Paige’s first birthday, Paige was admitted to CHOP for 1 week to be monitored to start her medical ketogenic diet. Cody and I attended classes daily in the hospital (while GramGram stayed with Paige, so she wasn’t lonely in her hospital room) to learn how to correctly use our equipment, properly work out the math to determine how much of each thing she is allowed to eat. Everything Paige eats must get weighed to the tenth of the gram. We learned how to prepare, weigh and cook her meals. We learned everything from what drinks she can have, vitamins she can be on, down to the toothpaste she is allowed to use.
Medical keto is no joke.
 

Paige was a rockstar on her first day! She ate everything we presented her with, without hesitation.
Then we had our day 2. Paige experienced what they call the “Keto Flu”. She was so beyond tired we had so much trouble waking her to feed her. Once we could feed her, she was vomiting anything and everything we gave her (including her meds). At this time Cody and I were hit with questions tormenting us as parents,

“Was this a mistake?”

“We admitted her to make her sick?”

“What if her seizures get worse?”
 

The keto team reassured us many times that this is a beyond common reaction bodies make to such a strong diet change. This is one of the reasons for the admission so they can be monitored. Paige had more blood tests and an EKG to make sure all was okay. Tests came back normal.    
Day 3 was a complete turnaround for our little peanut. Paige perked right up and was back to her normal, beautiful, smiling self. She even started saying her first word, “Dada”.
She immediately seemed so cognitively alert (another pro of the diet). We were so excited!
Paige went on to go through the next 6 months SEIZURE FREE!
 

Unfortunately, after a med adjustment that ended our seizure freedom. With more med changes, med fails, diet ratio increases, emergency room visits, Life Flight trips, and more hospital admissions,
we found ourselves at another dead end. Paige had gone to experiencing 8-15 seizures monthly.
 

Once Paige turned 4 years old, we were presented with the option of a VNS placement. Due to an increase in seizures right after we welcomed Paige’s new sister Penelope to the world. We did decide on having the VNS procedure for Paige when she was 5 years old, in October of 2023. The VNS (Vagus Nerve Stimulator) is an add-on therapy for adults and children 4 years and older. It is approved to treat focal or partial seizures that do not respond to seizure medications. This device sends regular, mild pulses of electrical energy to the brain via the vagus nerve. The therapy consists of a device that is implanted under the skin in the left chest area. An electrode or wire is attached to the generator device and placed under the skin. The wire is attached or wound around the vagus nerve in the neck.

 

During all of this, we do have other parts of Paige we also need to focus on. Paige is unable to sit, crawl, stand or walk without assistance. This requires new additions to our home…. medical equipment! A bath seat, pediatric wheelchair, gait trainer, supportive activity chairs so Paige can sit comfortably and independently to learn and play (to name a few). Paige is still learning to feed herself, communicate (she now has an AAC eye gaze device to help with this!) Though she doesn’t talk or say many words, Paige will “growl”, yell and laugh louder than anyone! If you ever have trouble understanding her,
she will definitely tell you through her eyes and eyebrow expressions!

 

With multiple therapies weekly (PT, OT, SLP, Trexo, Hippotherapy, Feeding), Paige has been making some great improvements. She currently attends Kindergarten (with her nurse) daily. If the option is there for us, we will do what we can do to help Paige develop.