June is looking forward to her first plane ride today as we head to Children’s Hospital of Michigan to meet with Dr. Chugani who is the foremost authority on IS. We will be there for two days. Tomorrow, June will have a series of tests, including a three-hour EEG and a PET scan to evaluate her for surgery. On Wednesday, we will meet with Dr. Chugani to discuss the results. In our wildest dreams we never thought we would pray for June to be a candidate for brain surgery, but that is what we are hoping for now. Since June has failed most of the medications we are running out of options and the stories we’ve read about the babies who have undergone surgery sound promising.
When we get back from Detroit we will likely start June on the ketogenic diet, which is high in fat and low in carbohydrates. It is used to treat difficult-to-control seizures in children and babies. Our doctor at STL Children’s Hospital tells us that babies who have failed other medications have experienced success in controlling spasms with the ketogenic diet. Studies show that babies and children who try and fail two medications to treat epilepsy have a 1% success rate with other medications. June has tried 8. We are getting into very low numbers here, so when her doctor told us the ketogenic diet has about a 3-5% chance of working on June, we thought it was worth a try.
You may be wondering how the diet works and how you would start the diet on a 5-month-old baby. To put it simply, the diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, our bodies run on energy from glucose. When there is no glucose in the body, we begin to burn stored fat and convert it into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, can lead to a reduction in the frequency of seizures. Doctors do not know why this diet can prevent seizures. They also do not know why it works for some babies and not others. I am now realizing more than ever why research funding is needed for epilepsy because there seems to be limited information.
In order to start the diet we will be admitted at Children’s Hospital for 5-7 days. Since June is so little the diet should be fairly easy to administer. She will get a special formula with the proper fat to carbohydrate ratio. I think I will have the hardest time with this medication. I love nursing June, and while we’ve had a few hiccups (no pun intended) in the process, it feels like the only thing that has gone well for us. She finds it comforting and so do I. It brings tears to my eyes to think I may have to take that away from her…from us.
The doctors tell me that I can still nurse while she is on the diet. I will just have to limit the amount of time she nurses and supplement with the formula. However, I have a feeling this will be more difficult than it sounds, especially since June has been refusing a bottle. I worry she won’t go back and forth that easily and we may have to stop completely, but she may surprise me.
Thank you for your continued prayers and support. We will update you on our trip to Michigan when we get back.