Chuck came up with the title for this post and I think it is perfect! We (Chuck and I) have officially decided it is time to start weaning the diet. As of tomorrow Gabriel will be 6 months seizure free! YIPPEE!
We have come to this decision for a variety of reasons. Mainly, we want/need to know if the diet is doing anything or not. We are pretty sure it is not. We have been in touch with the Dr. we saw at John Hopkins last November. He said back in June that he would start weaning the diet (And he literally wrote the book on the diet). Our doctor here was not at all in favor of weaning the diet at that time. So we followed the course our doctor here recommended and weaned a medication. SO glad we did! Great to see Gabriel off of a med and his personality coming back!
Gabriel has been BEGGING for food lately. I have been careful to still feed him in ratio but have not been as diligent in calorie intake. He is also testing boundaries with food more and more. He does so well 90% of the time but the older he gets the harder it is going to be to control what food he is and isn’t around.
If the diet isn’t keeping the seizures at bay it is a lot of work, expense, physical toll on G’s body and social isolation for all of us for no reason. We are more used to it than a year and 1/2 ago. However, it very difficult to live in our food obsessed culture, and not feel constantly out of place. I would love to focus my efforts on helping him developmentally and enjoying time with as a family, instead of spending so much time buying, preparing and avoiding food. I keep finding myself dreaming of trick or treating for real! Not having to have a special treat ready to hand Santa instead of the candy cane! Getting to leave the house without spending an extra 5-20 minutes making sure he has the food he will need.
Even, with the resolve of the decision, it is scary. We are hoping our doctor understands and supports our desires (they are not decisions made in a vacuum, we have done a lot of research, followed the diet for over 18 months, sought input from a variety of reliable sources). We are also hoping that the seizures stay away. Epilepsy is such a bear! It is scary to think that any change we make in his treatment can cause the seizures to reappear. He is doing awesome right now and we want that to continue. We also want to make sure his body is only being exposed to treatments that are working.
We covet your prayers for a great response from our doctor and a smooth, seizure free wean from the diet.
****I want to be clear that we still totally believe in and support the ketogentic diet as an amazing and truly miraculous form of treatment for epilepsy patients. (It just doesn’t seem to be Gabriel’s miracle)