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Guinness’ Story

Guinness was my baby boy that I dreamed of for over 3 years after a difficult time getting pregnant. He was a sweet baby that wasn’t fussy or whiny, but rather relaxed and just a joy to be around. He was completely healthy and normal at birth and was even holding his head up a bit from the very first time we held him. About a week after he was home we saw that his arm on the right side seemed like it had a bit of a tic but the pediatrician shrugged it off due to babies being a bit twitchy from time to time. A few weeks later he was having full blown spells where his body would lock up for a bit and then start jerking on the left side. Not knowing what to do or what a seizure looked like, I managed to get one on video and take it into his doctor who immediately sent us to a neurologist. The neurologist started us on one medication and after less than a week we were in the ER with our son who was having seizure after seizure within minutes of each other (only a month old) and then watched him go into a generalized seizure where he was letting out a horrible cry and couldn’t move. We were shoved out of the way by the ER doctors as they ran in and shot him up with Ativan to stop this seizure. From there they added a second medication and I watched my son sleep for literally two days solid and had to try to wake him just to get him to take a bottle. They performed an MRI while we were in the hospital this time and found that my son had abnormalities in his brain that was suspected of being the cause of his seizures. This cycle continued two more times and after the third time I called the emergency neuro number one night and the same doctor told me to grind up part of one of my own medications and give it to me son. It was that night that I said I was through with this nutcase! I headed down to Children’s Hospital of Michigan and requested a doctor that all of local mother’s of children with epilepsy had told me to seek out. The new doctor only saw my son once before I had to take him into the hospital again. Guinness was clustering and I was out of the Diastat for emergencies, so once again we headed to the ER. This visit would last for three solid weeks and include many tears, medications, a video EEG, and something that I didn’t expect. We were told that due to the abnormalities being on both sides of his brain that he was’t a surgical candidate, however they were recommending that we try the ketogenic diet. I had heard of this diet but I was skeptical as to how a diet of all things could help my son. I started doing my research online while in the hospital and I found this website which reassured me. We waited almost two more weeks for blood work to be done to determine if his little three month old body could handle this diet and the day that the results came back I literally watched a doctor run down the hall with the paper in her hands. The entire team rushed in and told us that we were starting keto that afternoon! Within two days of him being on the KetoCal formula, I watched my son blossom. He was smiling and cooing and being a baby again! He wasn’t just a lump of baby shaped flesh laying in a bed seizing over and over again. He was coming to life and giving me back the baby I had dreamed of for so long. Given him doing so well, we were discharged four days later once his ratio was brought up to 3:1. Many people would question starting the ketogenic diet in a child so young, but after having failed 6 medications, not being a surgical candidate, and still seizing hundreds of times a day, we were out of options. We don’t ever expect our son to be completely seizure free, but we see many DAYS now that are seizure free. We used to celebrate an entire hour that was seizure free, but now we get entire days! We are now weaning meds and hope to have him completely med free someday, but for now, this diet is the miracle that we had hoped for. I can’t thank his doctor and his dietician enough for prescribing this for him. Amber

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