Well it has been a very quick 2 years. In May of 2007, we began a course of treatment known as the Ketogenic Diet to try and control Larkin’s seizures.
The ketogenic diet is a high fat, adequate protein, low carbohydrate diet, primarily used to treat difficult-to-control (refractory) epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fat rather than carbohydrate. Normally, the carbohydrates in food are converted into glucose (sugar), which is then transported around the body and is particularly important in fuelling the brain. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. When the body produces ketone bodies—a state known as ketosis—this has an anticonvulsant effect.
The ketogenic diet is calculated by a dietitian for each child; age, weight, activity levels, culture and food preferences all affect the meal plan. The ketogenic ratio of the diet compares the weight of fat to the combined weight of carbohydrate and protein. This is typically 4:1
A computer program is used to help generate meals, which have four components: heavy whipping cream, a protein-rich food (typically meat), a fruit or vegetable, and butter, vegetable oil or mayonnaise. Only fruit and vegetables that are low in carbohydrate are allowed, which eliminates bananas, potatoes, peas and corn. Parents are required to be precise when measuring food quantities on an electronic scale accurate to 1 g.
That is what we have been adhering to for 2 years, carefully measuring Larkin’s food and liquid intake to the gram. Each meal is 237.5 calories and the computer program breaks it down to the exact measurement. The beauty of this regimen is that IT WORKS and Larkin has been seizure free since October of 2007. However, it is a part of the deal that we re-evaluate at 2 years and if the brain is better then we come down from the diet. Does not mean she is “cured” as Lennox-Gastaut is always going be her diagnosis, the brain damage incurred from LGS, and Infantile Spasms will always be a cross to bear.
Tomorrow (Wednesday) the 22nd I will take her to St Louis Children’s Hospital and she will be admitted for a 24 hour EEG. I will post pictures later – or maybe up on facebook via my cell phone.
Depending on what the scan shows we will make a decision regarding her care. If the sub-clinical seizing is better or who knows GONE?? then we will begin to wean her off of the diet.
If the sub-clinical seizing is still there or worse (I hate even typing that) then she will continue on the diet for another year.
So I am asking for prayers for our girl. Prayers that the EEG is clean. Prayers that if we wean her off of the diet that the dreaded seizures will not return. Prayers that my heart will not be in my throat through the entire process – although it will be.
I am scared. Big admission here from mom but I am terrified. We have our girl back and just the thought of changing things makes my chest hurt and tears well up. We could lose her again …… and I just don’t know if I could take that One. More. Time.
I suppose I have handled it several times over already – but I am going to stride into STLCH tomorrow with a beautiful little girl who turns to her name, smiles, babbles, walks with her walker, hugs, licks, and looks us in the eye. I want to leave with the same and keep her as such and love/school/therapy her into even more – forever.
Updates will come when we return.