We are basically beginning to shift our treatment decisions away from finding a long term solution to more of a quality of life type of treatment. Becca and I talked about whether to keep Philip on the diet and both agree that it only makes sense to move off the diet. It will be easier on Becca not having to make the special meals, it will be easier on our budget not having to buy the special foods, it will be easier on Philip not having to be on such a strict time schedule of when and how much he eats, and probably best of all is that we will be able to perhaps give Philip some of the foods he enjoys, while he can still enjoy them. Philip used to love fruit and vegetables and fries. He’ll get a chance to start eating those things again—which he has only been able to eat on a very limited basis on the diet. The downside of moving off the diet is that we expect his seizures to increase slightly, but at this point without the long term help it is not worth the day to day effort, for Becca or Philip, to keep him on the diet.
Last year before going on the diet, Philip was getting close to possibly needing a feeding tube because his swallowing ability had diminished so much. We have been managing for the last 9 months to feed him but it has been a challenge at every single meal. It is likely that in the near future his ability to swallow will continue to diminish and we will have to go the direction of a feeding tube. He may be able to retain his ability to swallow water for a while even if he can’t chew and swallow food any more. We’ll cross that bridge when we come to it, but in the meantime, Philip will get to enjoy some of his favorites.
Becca has talked to Philip’s doctor and dietician and over the next week we will transition off of the Ketogenic Diet. It will be a unique stage of our life that is coming to a close, and one that we will not soon forget. We have probably learned more about what is in food, and the dietary needs of a child over the past year than we would have any other way. I would say that we are sad about moving off the diet, but we really aren’t. One of the main aspects that we are looking forward to with Philip off the diet is the opportunity to all sit together at the table and eat a normal meal—something that hasn’t often happened over the past year. Also, we are looking forward to the freedom to go places and do things without having to build it around making sure we have Philip’s food.
We noticed a couple of weeks ago when Philip was havimg more seizures than normal and we gave him his “rescue med” that his myoclonic reflex seizure became significantly less. We will be slightly raising one of his medications in the same family as his “rescue med” to try to help lower the number of reflex seizures and possibly offset the expected slight increase in seizures while moving off the diet.
A couple of weeks ago we talked to Philip’s pediatric neuro-opthalmologist and asked him about Philip wearing glasses. This was before Philip’s diagnosis on Wednesday, but ultimately he said that, with all the other issues Philip is facing, the glasses were not helping enough to be worth fighting over. He said if Philip doesn’t like them on, it would be better for him not to wear them. In light of the diagnosis of NCL we now know that there are much deeper issues than a pair of glasses. If you wonder why you don’t see him with glasses on anymore in pictures or at church, now you know.
Philip isn’t usually happy at lunchtime, but yesterday he was happy and smiling at Joyanna. Here are a couple of pictures. You can see why he was smiling! What a goofy girl!