Brayden has not been gaining weight and as of late, he has been losing.
Earlier in the week, he had an appointment with a doctor specializing in pediatric physical medicine and rehabilitation. Brayden was there to have his spine looked at, as well as discuss seating/wheelchair/support options that would offer more support. We discussed Brayden's posture, seating and bony back. We stripped Brayden down for the doctor to have a look. He first reaction was to Brayden lower back and sacrum. I know that things are protruding and looking a bit unsettling. The doctor thought Brayden was getting too close to possible skin break down due to his lack of weight gain. The curve in his spine could be because the lack of muscle/losing weight, there is nothing there to help hold him upright.
Then Brayden has the two ERs in one day. The next day, we just crashed at home.
A couple of days later, it was time for the ketogenic clinic. An afternoon in Washington DC, with a neurologist and nutritionist. Brayden decided that he needed a wardrobe change before the big appointment so he had a mess in his diaper that made its way to his clothes. After the diaper and clothing change in the Children's parking garage we hurried up to the clinic.
After checking in and doing his weight, bp, etc. we sat in the room. The nutritionist came in and the first thing she said was, "So his weight is down and last time you were here we said that if he did not gain weight then he needed to be weaned of the diet."
I knew this conversation was coming. Brayden looks miserable. The pancreatic enzymes have not worked like we had hoped. Brayden is not absorbing food. The ketogenic diet is mostly fat, with protein and no carbohydrates. Fat is harder to absorb, and Brayden is not absorbing it. The ketogenic diet is not working for him. However it has been life changing for his seizure control. I have been fighting/negotiating/brainstorming with a few of Brayden's doctors in hopes of finding a way for Brayden to remain on the diet and gain weight. We have come up short, with no easy solution.
Brayden is being weaned off the ketogenic diet, starting immediately. The whole process could take around 3 months. However there is a compromise. Brayden is at a 4.25 to 1 ratio for the diet. We will slowly decrease the ratio. The first week will be 4 to 1 ratio. We will continue the way down. If we get to a place that it still helping Brayden's seizure control AND he is gaining weight. Then we can still remain on the diet. It is not all or nothing...we could find something in the middle. I have a phone call with the nutrionist once a week to check in and adjust diet weaning.
Two goals (and prayers) for weaning off the ketogenic diet:
Still have seizure control. Gain weight.