Jordyn was born to what would become anything but a typical cesarean section in September of 2013. Jordyn was born and had a little issue starting to breathe. Thankfully she started breathing pretty quickly and just kept getting stronger and stronger by the second. Her mother on the other hand suffered an amnionic embolism. I truly believe to this day the reason my wife pulled though, is because God knew Jordyn was going to need extra help. Almost 2 weeks after giving birth, we all came home.

Jordyn was the perfect newborn, she took naps, slept through the night and ate well. However, when Jordyn was about 3-4 months old, we knew something wasn’t quite right and we started quizzing our pediatrician who then sent us to a number of specialist.

In January of this past year (2015) we were sent to a brain institute in Miami. Over all, things were improving and we almost canceled the appointment. However, she had a slightly elevated blood test result and we wanted to find out what it really meant, if anything. They ran more tests and scheduled us for a 48 hour EEG in February.

During this whole time we noticed that Jordyn still liked to sleep and she seemed to be tired a lot. She was always blinking her eyes hard and then her head would drop. Tired right? When we thought of seizures we thought of Tonic-Clonic Seizures. We had no idea there were other forms.

After finishing our 48 hour video EEG it was clear that Jordyn was having Atonic (drop) seizures and also having a few absent seizures. This was a complete surprise. They sent us home on Keppra and we slowly increased the dosage over the next several weeks and months.

July rolled around and Jordyn was placed on the highest level of Keppra she could be on. 7 Days after starting her highest dosage of Keppra, I stayed home to monitor her seizure activity. I started counting, then starting writing seizures down, & by lunch she had about 45 drop seizures and 1 absence. At 4:00 she was at 81. I remember it was 81, because that’s when I said we are in trouble and called our neurologist (who we love). She sent us to the ER and by the time we reached the ER, we had well over 100 drops for the day. They started Jordyn on a rescue IV medication and we thought we would be in the hospital a day or possibly two. The next few days she was having drops just about every 60 seconds. They had an IV of medications dripping into her and trying new and additional ones. After about one and half weeks in the hospital room watching our daughter either sleep nearly the entire day or twitch from the pain of the medication, I approached the medical team and said… “I’d rather her have seizures, than continue these medications.” Shortly after, the Ketogenic Diet was officially offered as an option. At that time we were aware of the diet, but didn’t know anything other than the name. That evening I watched the movie “First Do No Harm” and by morning we were 100% team Ketogenic. After watching the movie I was 100% sure this was the answer to our prayers. They started us on the diet the very next day.

We started seeing a slight improvement within the first week. We went from 130+ drops a day to somewhere between 30-60 a day & after 3 full weeks in the hospital we went home. After 58 days we were down to 10-12 drops a day and on day 59 we had 0! Then day 60 came, Jordyn became sick and her drops jumped back to 30-40 a day and then things improved a little, but we were no longer were in the 10-12 range a day. I and our Keto Super Hero Team (Keto head nurse, Keto nutritionist and Keto neurologist) just knew that we should be doing better. So we made several small adjustments to her diet over a course of several weeks. Her cognitive abilities were getting stronger and stronger. She started walking in late October, at 2 years old, and in November she had 3 seizures. As of December 29, 2015, we are currently 47 days seizure free! To make things even better, we will be weaned off of Keppra by 1/7/16. Our hopes are to start weaning her other medication in February if all goes well.

Jordyn is delayed, but the progress we have seen in just the past 47 days is amazing and so encouraging. She is walking, laughing, playing, loves books read to her, starting to say a few words, and plays with her big brother… Back in July when we were well over 600 seizures for the month, I wouldn’t have believed anyone if they told me we would be where we are today… 0 seizures and weaning medication.

The Ketogenic diet is far from simple or easy, but it’s worth 100% of the effort. The Ketogenic diet isn’t the answer for everyone, but if you’re reading this, I plead with you to please consider it. If our Keto Super Hero Team reads this, we want to say a special thank you to you all. Wishing everyone a happy and HEALTHY NEW YEAR

Best wishes,

Jordyn’s Dad – Jeff