Ketogenic Diet

Kira went to the Doctor's to get some fasting labs and urine today, to get the ball rolling to get back on the Ketogenic Diet for her seizures. She was on this diet before, almost 2 years ago. It didn't completely take away her epilepsy, but it was the best sucess so far out of all of the medication we have tried. The problem was, even though I was in contact w/ the nutritionist, she kept going out of ketosis. Any extra grams of carbs effect her metabolic system when shes on this diet, and can throw her right out of ketosis. Here's a very interesting tid-bit. Sunblock, cortizone ointment, shampoos, toiletries of all kinds, have CARBS in them! (Sugar) When the skin absorbs these items, you are virtually ingesting carbs. Crazy, huh! So there is no explaination int he scientific world HOW or WHY this diet works against epilepsy, they only know that it does. Of course, since she is 100% g-tube fed, Kira's version of this diet will be a powdered formula called "Ketocal", mixed with a precise amount of water, and apple juice. This is her meal. The ration depends on her height and weight, and it has to be very exact in order to be sucessful. Children who do eat by mouth, get to eat butter and cream popsicles, hotdogs mixed in mayo.. etc. The point is to be high fat, and very low carb. So Kira and I get to be Ketosis Sisters! Only, on MY diet, it makes me lose weight, on hers, she will not lose weight( even though Homegirl can stand to lose a few rolls and chins), nor gain, even though it is high fat. Before starting the diet last time, they make you read this particular book and become educated with what it does to her body and how important it is to follow all of the rules, etc. It also detailed SOOOO many very inspiring true stories of children who were severely disabled, only to turn around and function as almost Neuro typical kids. My hopes after reading this book could not have been any higher. There was this little girl in particular who at the time I was reading it, was just a bit younger than Kira. It said she did not cry and she barely moved. She had no connection to the outside world. After only two days on this diet, she was sitting up and playing with toys. Oh my Gracious! I just KNEW this is what was going to wake Kira up! This is it! After we leave Fremont, I will be driving an awake baby girl, who can see me, home! This was maybe one of the dumbest things I have done throughout this entire roller coaster of a journey. I created this completely delussional image of a miraculous and fully restored healing in Kira. So then when it did not happen, I sank even deeper in my depression and fear and hopelessness. What I should have done, and what I will do now regarding this treatment again, is go into it knowing this diet can help her epilepsy, and in turn, if we can get her seizures to slow down just a bit, maybe more positive stimulation can take place in her brain, thus perhaps encouraging some room for developement. There are other treatments out there that I have always wanted to try on Kira. They are Hyperbaric Oxygen therapy..aka HBOT. The other one is stemcell therapy. I spoke to the Doctor who preforms the therapies and stemcell transplants at Duke. She said that before Kira could do the stemcell, she would first have to undergo chemo. She told me that the chemo alone could kill her because of her fragile state. She said the odds of that are about 20%. thats before the we even start with the stemcells! She said then after all is said and done, there is of course a chance that her body can reject it. UGH! I didn't know what to do. In one hand I have Kira undergoing this procedure and waking up and it creating fresh new braincells that do what they are supposed to. In the other hand I have Kira dying, because I tried this procedure on her, in hopes to wake her up, when I could have kept her comfortable at home the way she is. After being absolutely torn and my mind spiraling every time I tried to process this prediciment, I somehow put it on the backburner. It is still something that sounds so encouraging every time I read about it. I am just scared to death for every little detail involved, physical and emotional. So for now, my Girl will continue with her normal meds and restart the Ketogenic diet to help control her seizures.