Out little girl, not quite 5 years old, has been diagnosed with Tuberous Sclerosis Complex. Here is a definition from the TSC Alliance website: Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.Mia has some benign growths in her brain that cause her to have seizures. The seizures are under control for the moment, but the future is very uncertain. We have discoverd that a ketogenic diet has been proven to be effective in controlling seizures so we are working hard to change our habits.
A ketogenic diet is based on an extremely low carbohydrate, high fat diet (think Atkins with more fat and less protein). We are learning. Our first step is to eliminate processed sugar and grains from Mia's diet as much as possible and to up the fat content. Bacon and eggs and a piece of fruit for breakfast and tuna salad and tomato for lunch are examples from menus I have seen. Mia's mom has never liked vegetables, but we are trying. It is a hard diet to follow and needs medical oversight but it can have amazing success in controlling seizures that are hard to control in any other way. BTW, I am not an expert on any ot this. Still in shock, actually. So if I have said anything incorrectly, please excuse me.
Of course you are still in shock! Many hugs for you and prayers for Mia and the family. I know a little about this complex disorder, and I know that it varies greatly in its impact. I am praying that Mia has the mildest case ever.
ReplyDeleteShe is so beautiful. Hugs & prayers - it's a process getting those new diets in place but eventually they become a way of life. At least that's how it was for me when I had to eliminate all forms of milk from my diet. It's hard, but we can do the unthinkable, esp. when one of our little ones is on the line. ;)
ReplyDeleteShari--thank you for the comment on my blog. Would love to talk more with you about your sweet girl! Email me anytime at bschwaigert23@yahoo.com
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