One of our biggest blessings and secret weapons against Batten so far has been the work of our friend Ameet Bagwe over at LeanScience. We are in a game against time for Jojo, and the minute we found out that we were dealing with a neuro-degenerative disorder, we did what most parents would do and started poring over every aspect of influence we could think of to try to minimize progression of the disease – starting with diet.
First, we called Ameet – we have known him for a long time, and his thorough and scientific approach to achieving brain and body efficiency is unlike any other. Second, we searched medical journals, clinical trial details, and published studies on Alzheimers, epilepsy, and Parkinson’s to learn if there had been any linkage between diet and the progression (or limiting of the progression) of these diseases. Interestingly, the data we found directly supported Ameet’s guidelines for dietary decisions for Joseph. If you would like some interesting links of different studies I will gladly share, but for the really good detail, Ameet posted his guidance for us in his Facebook Note to Jojo.
Some of our observations since putting Jojo on the recommended diet:
- Within 2 days of putting Jojo on a regimen of coconut oil and ghee, we saw notable cognitive improvement – sentences were longer, observations more astute, and he even told a joke (literally, the first time we saw his sense of humor emerge).
- Within 4 days his staring spells (common to children with epilepsy) reduced dramatically, play became more focused, and his temper less volatile.
- Within 1 week of removing processed sugar and gluten from his diet his sleep cycles became more normalized – we still had trouble getting him to fall asleep, but once he drifted off he would sleep up to 8 hours instead of 3 or 4 at a time.
- Within 2 weeks of his dietary change, probiotic and vitamin C introduction, his persistent eczema that had been with him since being an infant was completely gone.
These are just our observations – but as Ameet mentioned in his post, our effort to reduce inflammation, remove waste and improve neuronal efficiency appears to be paying off. We continue to work with Ameet to try to find minor improvements, address challenges as they come, and deal with the ever-changing aspect of a brain in decline, but we feel without question that we are giving Jojo his fighting chance to get to clinical trial, and onto a cure by helping his brain and body work as optimally as possible.
And for the record, when we finally did get to the nutritionist at the hospital to review Joseph’s diet several weeks after our initial efforts, his feedback was, “You are pretty much doing everything right and more!” We feel that Joseph would agree.