Kayli has been on the diet for a month now. Her break through seizures (seizures even while on medications) have decreased greatly! She is on a lower dose of Keppra and Banzel while on the Keto diet, and is having fewer seizures.
Since her heel clip surgery (2 weeks ago), Kayli's heart rate climbed. She worried everyone with her heart rate in the 180's when normally it would have been in the 110's or 120's.
The dietitian ordered more water intake, examining the possibility of dehydration causing the high heart rate. Kayli's heart rates did come down, but seemed to plateau in the 150's. The cardiologist put a halter monitor on her for 24 hours, confirming the extraordinarily high heart rates. Both the dietitian and cardiologist agreed in increasing Kayli's water intake to see if she need more of a push or bolus to get her past the plateau. The Cardiologist also set up an appt. for an echo (heart ultrasound) to check the function of Kayli's heart. The dr. is cautiously aware that Kayli could be in heart failure.
Last Friday, Kayli went to the Keto clinic. The team is increasing the water intake, so that Kayli is on 50 ml's of fluid (KetoCal or water) in the entire 24 hours of the day. In addition to those fluids, we are to give her 600 ml's of med and free water flushes in the 24 hours. Needless to say, Kayli is going through a LOT of diapers, sheets, and chuxs (protective pads)! lol With the increased water, Kayli's heart rate is down in the 130's now, while awake (we are almost back to her baseline!!!).
During the h/r plateau, Kayli's ketone levels dropped to negative (no ketones) in her urine. Her blood sugar levels were in the 70's and 80's while her range is to be in the 50s-70s. The dietitian explained that the ketones may be evaporating (like acetones do). With the increase of water, I have found her Ketones to be back up to 40 (Ketosis). Her blood sugar level has been in the 60's.
All around, the increase in water has helped her 1. blood sugar level 2. ketone level 3. heart rate 4. hydration
The dietitian is adding MCT oil (coconut oil, or similar) and Beneprotein to Kayli's KetoCal (formula/food). This will keep Kayli regular, even when we decrease her water intake. It will also add protein calories while we decrease her sugar calories (KetoCal). Kayli is on such low amounts of daily calories (288 total), so she cannot afford to decrease the sugar calories without adding protein calories. Her metabolism is so slow. I joke, saying she has a metabolism like her Momma, where we can smell food and gain weight! LOL
We currently cannot afford the hundreds of dollars it will take to add this to her diet, so we are submitting it to both insurances, hoping for coverage. In the meantime, we are continuing to give Kayli higher sugar calories than she needs.
Kayli has one more week to keep her casts on (from her club feet heel surgery). Her casts smell horribly because the casts were placed so high up her thighs. Even though the right cast was cut down in the emergency room, they are still pretty high. Add the fact that Kayli is getting large amounts of fluids, you can imagine the amount of watery stool and urine she is producing. Since the casts are so high, and she is more than filling her diapers, the urine and stool are flowing down her casts/legs. The smell is becoming unbearable! The dr who cut her cast down said there isn't anything to worry about the urine going down the interior of her cast/leg. I am not worried, but repulsed! I am calling the ortho tomorrow to get her casts replaced. Nobody should have to put up with the smell, urine, and feces on them! Not to mention the bacteria growth likely happening in the dark inside of the casts! YUCK!!
If Kayli's heart rate does not completely go back down to her baseline, she will have the echo this Friday. The Cardiologist remains cautiously concerned that she may be in heart failure. If this is the case, Kayli will receive supportive heart medications.