Keto-diet no go

Jordan did not adjust well to the Keto diet. His body could not handle the formula. He had very bad diarrhea and stomach aches which began the first night of the diet & worsened as the ratio increased. When he was put back on his regular formula he was fine again. It was a very rough 4 days for him. He got a very bad rash from the pampers they gave him & they were too tight the night he had the diarrhea. It was very dry there & he needed to be on humidity most of the time which gave him excessive secretions, which he coughed up well on his own, but left his neck & trach ties wet resulting in irritation on his neck. His G/J button got tugged on in the night and almost came out & was sore & bleeding a bit in the morning and, there were repeated needle sticks to try and get blood draws which never did all get accomplished. He didn't even want to play with the cool toys they brought him. I felt so bad for him. I tried explaining things but it was just such a bad experience. It was just suppose to be a simple diet change & he suffered most of his time there. He got sad at times & of course had an increase in seizures from the stress.

The new plan is to decrease his phenobarbital, since it is so sedating, and increase his Topomax at the same time. It will take about 4 weeks to make this change at which time his seizures will be reassessed and if need be, we will start another med (Keppra I think)

Jordan is very happy he is home, in his own bed, with his own nurses who know him & what he wants & needs & who love him. I am taking the day off today to clean my home & regroup my brain. I am a bit discombobulated. I am upset the diet didn't work but more so about what he had to go through the last few days & not sure how much he understands of all of it. I very rarely see him cry & he did quite a bit this week. He is happy & content now & I just need to move forward & focus on the next step. Keep saying prayers for Jordan. I know God hears the prayers & loves Jordan.