Brayden is in his final week of the ketogenic diet. The diet has been life changing for his seizure control. The keto team has been our guide for almost four years (it would be 4 yrs in April since he started the diet), so over half his life. I feel a little lost because they would take the lead in his medical care...most decisions would be made through the ketogenic team or having them at least consult. We saw them so many times and many emails. Brayden's health was closely monitored and watched...and now I am not sure who should do that.
Thankfully the wean off the ketogenic diet has been relatively smooth. This last step down has been the only time we have seen an increase in seizures. The increase in seizures have mostly been in the evening, close to the next medication time. And we have only had to use a diastat once.
Last week was long after 3 appointments (and Jeremy was out of town for the 4th time in January) and the driving, lots of driving. Brayden's GI doctor is helping us navigate the best nutrition route for Brayden. Brayden GI system is not a big fan of change and his does not absorb things well...and through that continuous J-tube feed. I would like to increase the rate on his feeding pump because he is hooked up all day and some days we have a hard time finishing his food...and in his little life every calorie counts.
We also saw Brayden's neurologist. Brayden has been with her since he was just days old. And frankly she was the one who had to break the hardest, worst news to us in those early days...so we know her well as she does us. We discussed Brayden's seizure medications and adjustments off the keto diet. Thankfully no major changes yet but we are armed and ready, if/when needed.
A lot seems to be hinging on Brayden's appointment in March with the Bone Health Clinic...hopefully his bone will start looking better than butter, much sooner than later.