Hospital Initiation

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.

Print Friendly, PDF & Email

7 thoughts on “Hospital Initiation

  1. i have been following this blog for quite sometime and got valuable information regarding Keto Diet.thank you. My daughter has started the diet last week at 3.25:1 ratio. this is her 2nd week and her seizure frequency havent changed, Before diet , she had 1 TC a week and before MMR vaccination in Jan 2015 , she had seizure once in every 2/3 weeks. how long did it take for the diet to work for you? she is producing Ketones infact large Ketones ( close to 160 in the urine stick) on the day she had seizure. in fact she had more seizure on the diet than before the diet in this first week. i emailed her team also. she is also on Keppra and Onfi which didnt help much with seizure control. Any advice or help to give the diet best chance to work on controlling seizure?

    • Generally it is recommended to try the diet for 2-3 months before assessing its effectiveness. Some people experience a dramatic change as soon as they start ketosis, where for others it seems to take some time. For Nora it progressively got better and better over time. But even when she went seizure free for weeks at a time, we had some indications her seizure threshold was still low, including a few breakthrough seizures. So I would say it was really something more like 4-6 months of being on the diet to change her seizure threshold and give her brain the space it needed to develop past it.

      So keep at it. Be consistent. Try to get high ketones evenly throughout the day. Try it for a few months and see if things improve. Let us know if there is anything else we can help with.

    • With Jaron we didn’t get seizure control right away. When we were in the hospital for the diet initiation we didn’t see any drop in seizure count. Jaron was on Keppra and Depakote at the time and the doctors upped the Depakote which helped with the seizures for awhile. A month later when the effectiveness of the Depakote wore off we didn’t see much change in seizure control. We waited 2 months and several tweaks to diet before we saw a significant decrease in seizures. It took 3 months before we saw seizure free days. I know it is frustrating when you are working so hard with the diet and you are not seeing results but I would give it at least 3 months. Like Ted said, let us know if there is anything we can do to help.

  2. Hi there. Our daughter had her first seizure on her first birthday and we’ve had anywhere from 20 to a few hundred per day since then (she is now 3 1/2). We went inpatient to initiate the Ketogenic Diet back in March of this year but she couldn’t tolerate the cream so we were sent home on a Modified Atkins Diet and had 10 seizure free days before the seizures resumed. They recently started increasing in frequency and severity and we are slowly transitioning her to a 2:1 Ketogenic diet. I actually sat down with excel this afternoon and am planning out a few meals to get us going. I tried googling how to change recipes from 4:1 ratios (there are LOTS out there) to 2:1 ratios (not as many) and found this blog instead! I started to cry when I read the little section at the bottom of the page that says that Jaron has been seizure free since 2013. This is so my prayer for my little girl!!! I will be following this blog for sure. Thanks for sharing your stories!

  3. Thank you for sharing your experience. My two year old is scheduled for admission at the end of the month to begin keto. I am nervous and am doing tons of research.

    • Hi Nissa,

      I can understand the nervousness. It is a big step. Remember to give yourself grace. It can be hard as you both you and your child a adapt but after awhile it will become just a part of your normal routne. Remember to ask your dietitian lots of questions while you are in the hospital and when you get home. I think I had our dietitian on speed dial the first couple of months. 🙂 I will pray for a good outcome. Let us know if there is anyway we can help support you.


Leave a Reply

Your email address will not be published. Required fields are marked *