Ketogenic Diet

When Bryce was 11 months old, we started him on a third anticonvulsant, Topiramate. We decided to try this new med because his convulsions were back. They returned a month before we started Topiramate, but we wanted to research the different medications our Neurologist suggested. We also wanted to get Bryce off Phenobarbital, even though it works the best for him (it is very suppressive). We hoped that by replacing it with Topiramate Bryce would be able to do more. Unfortunately, once we started decreasing the Phenonbarb his seizures became much worse, so we had to stop.

The effects of adding Topiramate were almost immediate! It didn’t really help much with his convulsions, but it definitely made a difference with his spasms. They stopped clustering (at least for a couple months). He still had single spasms throughout the day, but we were glad he got a short break from the clusters. Another improvement was that he became more alert. He started looking at things more consistently, and seemed more interested in his surroundings. He laughed for the first time, which made my heart soar! He also started doing this:

For someone who isn’t supposed to walk, the fact that he can roll over is HUGE! I could burst with happiness at how proud of my son I am! However, he does have some limitations with his rolling. He can only roll from back to belly, and always to his right (his left side is stronger so it kicks harder). He also can’t roll over every time he tries. In fact, he only succeeds about 10% of the time, but his perseverance amazes me! Bryce is such an inspiration!

Despite all the good things that came from starting Topiramate, seizure control was only temporary (didn’t see that coming, did ya?). After two months, his spasms started clustering again. They, along with all his other seizures, were getting worse. At this point, Bryce’s neurologist came to us with a new type of treatment, the Ketogenic Diet. We had heard of the diet before, but didn’t really know what it was. Not to worry though, we soon found out.

A few months after our neurologist suggested we try the diet, we met with a dietitian and another neurologist at Primary’s. First we learned that in order to qualify for the diet, you have to fail three anti-seizure medications, which Bryce had. Then we learned that this diet is really high in fats, and very low in carbohydrates with absolutely no sugar. By removing carbs, it forces the body to produce and use ketones for its source of energy. For some reason this helps reduce (and in some cases eliminate) seizures, although it is not known how or why. Interestingly, the inspiration for the diet came from the Bible, so it makes sense to me why it works!

All tuckered out after getting labs

The diet works differently for everyone. In some cases it doesn’t do anything, while in others it helps with the individual’s alertness but not their seizures. Since Bryce’s seizures stem from a genetic disorder, we weren’t sure how effective the diet would be. Trying to remain realistic, we came up with a few goals. We didn’t expect Bryce to become seizure free, but we hoped it would help with his spasms for more than a few months. We also hoped it would help enough with his seizures that we might be able to reduce his medication, even just a little bit. Finally, we hoped it would help him become more alert and aware of life around him.

In order to start the diet Bryce had to be admitted into the hospital for three to five days. So, a few months ago we headed back up to Primary Children’s. When Bryce was admitted into his room, we learned a few things. First, his diet would be a 3:1 ratio (each meal would consist of three parts fat to one part protein + carbohydrate). Before Bryce could be on the 3:1 ratio, he would have to start with a 1:1 ratio, and it would increase each day we were there. He would only eat 800 calories a day, which would be split into five meals. Next, he would need a BUNCH of blood work that first day. This would give his doctors a baseline to compare all the tests they would have to run. They needed to check his blood sugar every four hours, just to make sure it didn’t get too low (which meant lots of finger pokes). Finally, before we could be discharged Bryce would have all the same labs drawn again to see how his body was handling the diet. If things were comparable, we could go home. If they were a lot lower, we would have to stay longer.

The first day was the hardest. We were told not to feed Bryce after 7 am. Before then, all he could have was a bottle of breast milk. By 10:30 am we were in Bryce’s room and he was given his first fatty meal. It was a small bottle of a special Ketogenic formula, called KetoCal. He wasn’t too thrilled to eat it (I thought it tasted pretty good), but somehow we got him to finish. After that, I ran upstairs to drop off about 30 bags of frozen breastmilk. While I was gone the phlebotomists came by to draw Bryce’s blood. Unfortunately Jus had to handle this mostly on his own. He helped them hold Bryce down (he is a strong little boy and puts up a good fight when getting stabbed with needles). He’d been fighting, screaming and crying for about 10 minutes before I got back. I entered the hall his room was in, and could hear him. I pretty much ran to the room, needing to know why my son sounded like he was in terrible pain. Jus was almost in tears, which, of course, made me cry (yep, I have a hard time keeping it in when Bryce cries the way he was). I put my cheek on his, and started talking to him just so he knew I was there. It helped, he didn’t fight as hard. When they were done, I snuggled with my boy and let him take a nap. He deserved it!

The rest of the day went fairly smooth, that is until 7:30. His final meal of the day was brought in, another bottle of KetoCal. He finished it, but not even 10 minutes later he decided to give it back. Bryce has always puked a lot (and I mean A LOT), so when he started coughing Jus and I knew he wasn’t just trying to clear his throat. We rushed him to the sink just in time! He lost EVERYTHING! The worst part about it was that he didn’t have an extra bottle to eat. We couldn’t ask for another one because the people who make the patients meals were off for the day. Bryce had to go ALL NIGHT without food. Honestly, he handled this better than I did. The lack of food made him very tired so he slept pretty well, but while I was snuggling with him I could hear his tummy growling. Yep, it made me pretty sad.

By 7 am the next morning Bryce was given another bottle of KetoCal. He was SO EXCITED to eat, he finished it in no time! Then, around 10 am, his dietitian came in and began teaching us how to do the diet. We learned that EVERYTHING Bryce eats has to be weighed to the tenth of a gram (it is very precise). We also learned what foods he could eat, how to measure his meals and ingredients to avoid. The rest of the day was pretty easy. Bryce ate his meals without much difficulty and kept everything down. He slept most of the day (his body was adjusting to the diet which made him very tired).

Adjusting to the diet is hard work!

Day three was even easier! Our dietitian taught us what to do if things go wrong. She wanted us to be prepared for everything that might happen to Bryce while on the diet (I am SO GRATEFUL we had this lesson). Bryce was also handling his meals really well! He even stayed awake most of the day! We were able to take him out of his room and walk around the hospital. He LOVED that! When we got back to his room, his nurse brought him some light-up toys to play with (his favorite), and we read some stories.

At noon, the phlebotomist came back to draw more labs. If they were comparable to the labs they took the first day then we could go home! An hour later, his neurologist came back with the results. Everything looked okay except his bicarbonate level (basically his blood was too acidic). We decided to check again after his 4 pm meal. When his results came back a few hours later, his bicarbonate level had decreased! We had to stay an extra day just to make sure it would go back up and that Bryce would be okay.

At 9 am the next morning, Bryce’s Bicarb level was checked again. Finally it was increasing! It wasn’t back up to his baseline, but it was going up. His team of doctors decided it would be okay if we went home, as long as we had it checked again on Monday. We were so excited!

Bryce did incredibly well during the week following our hospital stay. He was so happy! In fact while he was awake he kept talking to us, constantly kicking his legs (something he does when he is excited), and super wiggly! He was so much fun! Then, a week after we were discharged things went downhill. He became very lethargic. We were told that this could be because his blood sugar was low, bicarbonate level too low, or he was too ketotic (too many ketones). In order to snap him out of it we were instructed to give him an ounce of apple juice. If that didn’t work then another ounce of apple juice 20 minutes after. We tried but it didn’t work, he remained lethargic. Our next step was to take him to the ER, so we did. They gave him an IV and drew some labs. Turns out his blood sugar was too low. The IV gave him just enough sugar to snap him out of it, and we were released. It was a good thing we took him in!

Bryce has been on the diet for a few months now. So far it has helped with his spasms. He still has them and they still cluster, but they aren’t as bad as they were. I haven’t really noticed a change in his other seizures, but that may take more time. He doesn’t arch his back as much as he did, and his limbs are a lot looser (he will actually let me move his arms!). More than anything, the diet has helped him become so much more alert! The difference is amazing! In fact, even if the diet doesn’t do much for seizure control, because it has helped so much with his alertness we have decided to keep him on it.

This boy sleeps in the most awkward positions