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.
Godspeed, beautiful Larkin. Hoping that everything goes smoothly. Prayers being sent to you and your family from California.
You know I’ve been praying for you all about this for a while and I will keep it up, especially tomorrow. You will not be alone. Let the tears come if they need to. Its ok to show you’re human once in a while you Super Mom. ((HUGS)).
Amy, you and Larkin are in our thoughts and prayers for sure….tomorrow and always. Looking forward to a GREAT update.
Sending our love…
We will be thinking of you guys tomorrow and overnight with the 24hr EEG and pending results. Hugs to Larkin and family, Jen D
I’ve actually managed to work peas and bananas into Jade’s meals. (We try to keep them compact because her tummy is pretty tiny on the diet.) We have JUST achieved seizure-freedom — four days in! I am imagining how amazing it would be to be over a year, like Larkin — it’s amazing!
I know I’m going to be just as scared as you when the time comes to wean. I pray that Larkin will have an amazing EEG tomorrow.
Do you read “The Mustard Seed”? Evan just weaned off the diet — it was awesome to read about him getting bananas and ice cream and popcorn!
saying a prayer that all goes well and you get the news you want!! She has done so amazingly well!! hug that girl for me!
I am thinking about you all, and will keep you in my thoughts and prayers. You all have been through so much, and I pray that for you, the transition off the ketogenic diet is easy and seizure free. But irregardless of what happens, I know you’ll weather the storm and come out ahead for Larkin as such is your way.
Let us know if you need ANYTHING in the process.
Amy-You all are in our thoughts and prayers. Thank you so much for all the help while Ethan started the Ketogenic diet I know I would have given in during the first week but thanks for talking to me.
thinking of you….
been praying and thinking of you and your sweet miss all day…hope all is going well, hugs across a few miles.
Amy you all will be in our prayers! Give that precious girl big hugs and kisses for us and thanks for the update!