Hello everyone!! My name is Amanda Swick. In an earlier post, Christy introduced you to our family but I thought I would share a little more about us. I am a stay at home to two beautiful boys. Josiah is 7 and Jaron is 5. Jason is a Christian minister who works with college students at Oregon State University. Jaron was diagnosed with Doose Syndrome in 2013 and was put on the ketogenic diet. He is currently 17 months seizure free. You can read Jaron’s full story here. Our family enjoys hiking, camping, riding bikes, going to the beach, playing board games and going to the library. Jason and I are excited to be able to encourage and help others on the ketogenic diet journey. Ted and Christy were a big help for us when we first got started and our hope is we can return the favor to others.
As I was thinking about what our first post would be, I decided I would just start at the beginning, with Jaron’s initiation on the diet. Nora was eased onto the diet from home, but Jaron went through a hospital initiation. If you are considering a hospital initiation, here is snapshot of what one is like.
We arrived at the hospital Sunday with Jaron having drop seizures every 3-5 minutes. We spent the rest of the day get labs done and getting settled into a safe environment for Jaron. Monday morning was an EEG and the neurologist diagnosing Jaron with Doose Syndrome. I immediately asked about putting Jaron on the Ketogenic Diet. He was already on two antiepileptic drugs and they weren’t working, so the odds of another drug working were very low. The diet had a greater chance of helping Jaron than another drug. The doctor agreed this was a good choice for Jaron and would have the dietician come in later that day to get us started.
The dietician and I first talked about whether the ketogenic diet was a good fit for our family. She described what was needed to make the diet work: lots of hours and loads of tears from all of us. She didn’t do this to deter us, but to be realistic about what it would take to make it work. She wanted me to commit to at least 6 months on the diet before I could give up. At that point, I was willing to commit to anything because Jaron was falling and hurting himself so much.
Next, we talked about what ratio to start Jaron at. We decided a high ratio of 3:1 was a good place to start since we wanted to get some seizure control quickly. Starting at a high ratio was only possible as a hospital initiation. At a 3:1, Jaron needed to be monitored closely for the first couple of days to make sure his body (possible kidney and liver distress) could handle the diet.
Finally, we had to decide what foods the hospital had that Jaron would eat for his first keto meal. I was under the impression from my research that Jaron would have to fast for 2 days before starting the diet. Since they discovered that easing into the diet is just as effective as starting the diet as a fast, they no longer required a fast. Instead they would start his first meal at ½ of his target calorie range and increase his calories over 24 hours.
We decided Jaron’s first meal would consist of turkey, lettuce, red peppers, mayo, and cream. Jaron loved the turkey, lettuce and red peppers. He tolerated me putting mayo on his lettuce, but it wasn’t his favorite. He HATED the cream. Jaron liked milk but he didn’t like cream. It took a lot of coercing to get him to drink it all. That was hard, but the worst part was getting him to take his medicine (he was on Keppra and Depakote at the time). The hospital’s way of giving him adult medicine that he can’t swallow was to crush it up, mix it with water, and feed it to him with a syringe. Yuck!! Through a lot of encouraging and bribing we would get it all into him. He was such a trooper.
After 24 hours on the diet, Jaron began to go into ketosis. They wanted to monitor him for another day to make sure his body was handling the change in diet well. During that day, we had to make sure he was drinking enough water and counted seizures for any change.
Even though his body was handling the diet well, there was no initial change in seizure count after a few days so they upped the Depakote, which would help for a few weeks, and sent us home. It would be a few weeks before we started seeing the seizure count go down due to the diet. It would be three months and an increase to 4:1 before we started seeing seizure free days.
Looking back at our experience with hospital initiation, there were things that I liked about the experience and things I didn’t. I liked the hospital initiation because I had daily contact with the dietitian. We sat down for an hour the first day and she showed me how to use the Ketocalculator. As I began making Jaron his meals at the hospital I had her there through the whole process. As I made meals on the Ketocalculator I could ask questions and gain confidence.
Also, being in the hospital forced me to only focus on figuring out how to administer the diet without the distractions of everyday life. This made the transition to the diet at home much easier. While we had issues with Jaron taking his medicine and eating all the food in the hospital, I was prepared to head home with ideas on how to address some of the obstacles we faced while in the hospital.
The tough things about the hospital initiation all revolved around the uncomfortableness of being in a hospital. Our food choices were limited which made it hard to find meals that were appetizing. We didn’t sleep well because we weren’t in our own beds. And there is the cost of staying in a hospital.
From Jaron’s perspective, the process wasn’t bad. We were at a children’s hospital so there was always something fun to do. People came in and sang songs with him. He could go to the play room and play with the toys. He never begged to go home and he seemed content most of the time. The only thing he didn’t like was the morning blood draws and the nasty medicine.
Overall I am glad we did a hospital initiation as it helped to arrive home prepared, confident and mostly ready for the days to come.