It’s funny, people ask “How’s she doing?” and my response is “Oh we’re doing all right!” But in my head I’m thinking “WHAT?” We are doing our best to stay positive everyday and thus far have been successful at it. We had a great ski trip with the family in Breckenridge, Colorado, first one in 3 years, and Lily went to ski school and learned to ski for the very first time and loved it!
However, the reality of Harper’s current condition is that right now she is not good at all. The diet from Houston went in a very bad direction. Her seizures are so bad and debilitating. She can’t hold her head up any more, not even in her car seat and she has forgotten how to suck and swallow. We are force feeding her to keep her off a tube and out of the hospital. So far that seems to be working. We have increased her medication to see if we can gain a bit more control over her terrible seizures for the moment. We we attempted to remove her from the diet Houston suggested and return her to the previous diet her seizures went nuts. She was having 10 to 20 a day some as long as 20 minutes each time. We put her back on Houston’s suggested diet and immediately she re-regulated to seizures every 4 to 5 hours day and night with each seizure being 8 to 10 minutes long.
We were in a better state after the keto diet and prior to the cornstarch trial, late September to late December. Harper was alert, showing progress in therapy that was scheduled around her patterned seizures of three and sometimes two per day with none at night. However, her nutritional intake was poor. Where her seizures were just 2 to 5 minutes long if even that. Now that they are 8 to 10 minutes long every 4 to 5 hours day and night and very intense, it is making it difficult for her to function during the day and function through therapy sessions. I am not sure if that is due to exhaustion from the intense seizures or regression from the enormous amount of seizures experienced last week when trying to return her to the previous diet to lesson seizure intensity.
Houston has suggested hospitalizing her and returning her to the keto diet tried last summer for four months with no success. I am not convinced that move address our concerns. I have asked them for further explanation prior to driving the 4.5 hours next week to meet with them. I have faxed, Children’s Hospital of Boston’s metabolic clinic Harper’s data to see if they would be able to address our diet concerns and have emailed some research professors at UT Southwestern to schedule a meeting for information regarding carbohydrate breakdown the signaling mechanisms used in the process. I currently have meeting scheduled this Friday. I figured with no patient load to carry and teaching it to others they might have some useful info these doctors on patient overload are not thinking about. We shall see.
I just pray we can get Harper back to where she was sooner rather than later because where she is at the moment is a nightmare for her! Oddly enough this article was sent to us this week by CHB on Dr Jensen’s current research and put us in better spirits last night as we finally had the chance to read it!