While at home, we are to monitor Kayli for sign of excessive ketones (rapid breathing, flushing, and rapid heart beat). We also monitor her for more difficult to see symptoms: nausea, abdominal pain, frequent urination and excessive thirst.
Kayli had a scary day Friday. She had rapid heart beat, increased/rapid breathing, she was gagging, and sneezing. Each of these symptoms can be signs of excessive amounts of Ketones! Kayli is not likely to vomit, because she had a Fundoplication. This means a portion of her stomach was wrapped around the lower esophagus to narrow/reinforce the opening, making it harder to reflux or vomit. Kayli also had a nasty drainage from her left ear, a low grade fever, and has been extremely fatigued/lethargic at times. Because Kayli's symptoms go beyond the scope of excessive Ketones/complications of the Keto diet, we believe she must have gotten a virus while in the hospital.
She was feeling much better yesterday, although she is still getting low grade fevers, asthma, and ear drainage. She is still sleeping more than her normal, but I think just about anybody does when they are sick and especially when their entire metabolism system is changed. Prior to the Keto diet, when Kayli was sick her seizures would increase. This has not been the case now that she is on the Keto diet!!!! The Keto diet already seems to be helping her!
Kayli's care plan has changed because she is not able to have many carbs/sugars while on the Keto diet (to maintain Ketosis). Kayli cannot have children's Tylenol because the liquid and chewable medications have carbs in them. Since her diet is maintained with minimal carbs, she cannot have any additional carbs. She now gets half of a Tylenol regular strength pill. We crush the half pill, and put it in a syringe with water to give to her through her Gtube/feeding tube.
Now that she is on the diet, we have to watch all carbs/sugars that go in and on her body. In the summer, there is only one kind of mosquito repellent we can use on her (all others have carbs) and she only has a few choices of sunscreen that do not have carbs. Even her lipsmackers lib balm even has carbs! Just about anything with flavor is likely to have carbs/sugars.
While it is quite an adjustment period to learn all the cautions and new norms, I can say that I am happy with the direction the diet seems to be going. Kayli has many more days where she has not had a single seizure! Although the seizures look slightly different (which can be scary when you are used to certain tell tales) they are happening less frequently. Her seizure medications have already been decreased, so I am encouraged to think this diet may be the solution to get subduing Kayli's seizures while getting her off the seizure medications that come with harmful side effects!! :D