Over time I have been gathering data on Harper and have noticed two patterns in Harper relative to her seizures: 1) has been illness hence the current attempt to fund the CDKL5 seizure research project with Dr Jensen and her team, 2) has been a relationship with diet.
For 18 months, 10 months prior to her CDKL5 diagnosis, I have thought Harper’s seizures to be some how partly related to diet. When she turned a year it became extremely evident that was the case and over the past 8 months I have been seeking out someone willing to listen and evaluate the data I have gathered since Harper was two weeks old. In the mean time we did attempt some experimentation with the keto genetic diet at which point it became even more apparent her seizures were diet related. After being told by all of our local hospital, Scottish Rite, Medical City Dallas, Children’s Medical Dallas, and Cooks Children’s Fort Worth that Harper’s case was outside their area of expertise and comfort level; therefore, they were unable to provide treatment in the area of diet, I turned to Texas Children’s Hospital in Houston. We had been to there Rett Clinic back in March 2011 just after receiving our CDKL5 diagnosis. Turns out that was very helpful in obtaining a return appointment for this experimental issue.
To my knowledge Harper’s condition has not been evaluated from a metabolic standpoint. Due to the seizures associated with it the condition seems to be constantly pushed towards neurological review, which makes this completely new territory in the metabolic departments. We had our appoint on Monday December 19, 2011 to review Harper’s data and condition with the neurological and metabolic team at Texas Children’s in Houston. The doctors and metabolic team at Texas Children’s in Houston have agreed to entertain the idea that her diet may have something to do with her seizures and are helping me administer this experimentation in a more controlled environment in an effort to rule it out as a problem or confirm the direction forward. I will inform everyone of details if it turns out to be a confirmed issue.
I am very glad we went, just disappointed it took 8 months to convince someone to listen. Now I am in search of a Metabolic Neurologist if there is such a thing. The diet in question is neither centered around ketosis nor glycemic index and I fear that if this diet proves to work in conjunction with Harper’s medication treatment that we will be outside there area of expertise in our ability to expand Harper’s variety of food. Plus at that point, if this diet does prove to be a positive direction for helping to maintain seizure control, I will want to find the person willing to evaluate this further for a reason why?