We are approaching the two year mark of Brayden being on the ketogenic diet.
Within the first few months we quickly saw a significant decrease in his seizures.
Before the diet 10-12 seizures a day and every 6-8 wks in the ER
On the diet 1-2 seizures a day and made it 5 months with a trip to the ER
We did struggle a lot with the right formula mixture with the ketogenic diet, discovered problems with his pancreas...which turned into losing too much weight and compromising his health (doctors were starting to bring up moving him to TPN).
We barely had to get hair cuts (a lot was falling out and became much lighter in color) or trim his nails or even buy new clothes.
We collected urine samples, lots of poop collection (do not ever want to repeat those) and lots of blood work. We tried tweaking the food this way, that way and the same with the pancreatic enzymes. They even tried to wean him off the ketogenic diet.
Once we found the right formula and added right amount medication for his pancreas, he began to thrive. His chubbiness is to the max. He is much healthier, absorbing nutrients and seizures are controlled.
Upon introduction to the ketogenic diet, we were told that most children are on the ketogenic diet for two years and can be weaned off (kind of like being on a heavy medication for too long). We drove to Children's in DC last week to meet with the ketogenic team. Brayden has been handling the diet pretty well, there is not a big reason for him come off the diet. Brayden is already monitored by many doctors so any problems would be addressed. Brayden also has a lot of blood work done (that is horrible, he is a terrible stick). He is closely watched on many fronts. The conclusion is Brayden will continue on the ketogenic diet indefinitely...as long as it works for him.
Did I say that he stayed out of the ER for over 5 months? That is a record for him (starting from the moment he was born).
We did boost the calories in his diet to make up for the lost weight. Now he is gaining weight a little too fast...tipping the scales at 36 lbs (when about a year ago, he was around 26 lbs). He blood sugar has been a bit high - possible sign of too much food and his urine a bit low - adding more water now and taking away some calories.
Now he is one yummy, healthy boy (well healthy for being Brayden).