By the third day his blood sugar levels were close to borderline low, so the dietitian and nurse practitioner lowered the ratio of his formula. With the diet, for every three or four calories of fat, there is one gram of protein/carbohydrate. So the ratio is 3:1- they had to change it down a little to 2.75:1 which means there is a little more carb in the diet. He seemed to tolerate that better and his blood sugar levels came back up. We are still feeding him four times a day and spreading out the formula and water so he gets an equal amount each time. We are no longer doing a continuous night feed which has its perks in ways. The reason they test the blood sugar level so often in the hospital is because they want the child to be stable before sending them home, because I won't be testing him for that. I just have to look for any warning signs of hypoglycemia and report it if it happens.
So the ketone strips are what I am doing at home 2-4 times a day the first month. Basically I put a couple cotton balls in his diaper and wait until he soaks them up with urine, and then place them in a syringe and use the plunger to squeeze it out. Then I dip a ketone strip in the urine and wait for the colors to show up. It is kind of similar to the test strip the doctors have pregnant women do at their appointments. We want the strip to be purple which shows there are ketones present. So the ketogenic diet makes the child use fat instead of carbs for energy. Since there is a lot of fat in the diet, the body uses that for energy, and the fat changes into ketones, which then feed the body's cells. The high amount of ketones in the body can help stop seizures in children.
So basically the main differences this diet represents to us as parents is the following:
-we prepare his formula ourselves once a day. We have a specific formula from the dietitian and we mix the proper amount of water with the Ketocal formula, and the Benoprotein formula. Everything is exact and measured out on a scale or a cylinder. Once prepared, the formula is good for 24 hours. It can sit out for 4 hours maximum in room temperature.
-we text his urine for ketones 2-4 times a day
-he now takes vitamins and supplements once a day (5 of them besides his normal prescriptions)
-we weigh him once a week and report to the dietitian his weekly weight, ketones and seizures activity
-lastly, he now is on oxygen at night
The reason he is on oxygen now is because we finally got someone to look up Carter's sleep study results. After calling several times and getting no response I was pretty frustrated. They said he has irregular breathing patterns, not quite sleep apnea, and requires .25 of a liter of oxygen while asleep. I have to admit this was the most challenging change for me, because he constantly rips out his nose canola and he hates it. We try to sneak it on him when he's asleep, but he usually knows and wakes up. We follow up with ENT next week to find out more about his obstructive breathing patterns.
Also some interesting details with the diet: he can't have any liquid medicines unless approve by the dietitian, because they usually contain sugar. If he needs a pain medicine like Tylenol, we are to use an adult tablet and then ask what the child strength would be. Also, any products such as baby wipes, shampoo, wash, chapstick, etc have to be approved and looked over for carbs or sugar. Surprisingly, many things have sugar in them and can affect the effectiveness of the diet. We have an approve list of medications as well as body products that we follow. We had to switch him to Johnson & Johnson shampoo and wash- I was using the WalMart brand and it had sugar in it. So now we have to watch everything he eats, but everything that touches him as well.
Overall, the diet has not been a huge change for us because he has a G Tube and is fed through his stomach. He also seems to be tolerating it well which is great. We have seen very few seizures in the last few days, so we are hoping this bodes well for Carter and us. I do admit with every little change with Carter, I feel a little more isolated from being "normal" and going out and doing normal activities. It also makes having a babysitter harder because we are constantly training our parents. I'm sure as with everything else, with time, it will just be another norm for us.
One last side note- it seems the older Carter gets the weaker his immune system seems to be. Perhaps it is just with winter time; he was just very sick mid October and then got sick again end of November. It worries me because he usually requires oxygen and extensive suctioning. I'm trying to figure out what places or activities we should restrict during these cold months to keep him from getting sick. Also, I'm watching closely for any family members or friends that are sick to not be around him. It might sound excessive, but when a simple cold lands him in the hospital it just isn't worth the risk.