Abby's Story

When I first spoke with you I was searching for information on the ketogenic diet. My daughter was suffering from infantile spasms and it was taking away everything she had worked so hard for. Abby was born with complex chromosome abnormalities that were undocumented world wide. The doctors said she would probably develop seizures. The first seizure was exactly one year ago today, December 15th. We spent a few days at our local hospital before we were rushed to Denver Childrens Hospital. Abby was diagnosed with "floppy airways" so during a seizure she would turn blue and would go without oxygen for 2-3 minutes at a time. It was really scary! We spent Christmas in the hospital. On Christmas Eve she had 12 seizures. Finally they got her seizures under control with Keppera and Topamax. She was still having at least 1 seizure a day, sometimes more. Weeks later an EEG showed that she had a lot of background noise. My understanding was, basically, constant seizure that didn't manifest outwardly. We dealt with it until May when her seizures changed. Her eyes would roll back in her head and she would contract over and over with her arms and legs. It took weeks for the neurologist here in Colorado Springs to figure it out and then a few more weeks to get the referral from him to go to Denver Childrens Hospital. At this point I was truly broken. The infantile spasms were 30-40 minutes long, 4,5,6 times a day or more. All of Abby's progress with physical therapy and feeding was going backwards, she was losing weight from not eating and she would sleep all the time. In Denver, Neurology wanted me to try another drug as we had already lost so much time and development. They started her on Vigabatrin until we could start the diet. The vigabatrin never work either. We finally got our appointment with the Keto Clinic and they were wonderful.... they have a whole Keto team! Dr. Laprysart (that's probably spelled wrong) and our dietitian Jennifer Smith worked with us for 5 days in the hospital and Abby's only real struggle after discharge has been low bi-carbs. We discharged from the hospital on Oct. 7th, since then she has been nearly seizure free. Her EEG shows no hypes-arrhythmia (which was the infantile spasm) and no more background noise. Praise the Lord! Armed with the information you sent I fought the doctors here in my town, and like many of the other stories, there was much resistance. Doctors who were not familiar with the keto diet seemed to have a very hard time supporting the idea. We also found that some hospitals are ill equip t to handle it. It was very hard to find support here locally, but in Denver it was a different story! God Bless you and the Charlie Foundation for being there.