Brave Girls

Two brave girls, my daughter and my granddaughter. Mia's drawings are always so happy. She drew several of herself and her mother the other day. Dressed in look-alike outfits and looking like two teenage friends in one drawing. The captions say 'Mia Loves Mom' and 'Mom sevoL aiM' but the mean the same thing.

When Mia started having seizures again, her mother stayed by her side, as she has in the past, for every moment. Even when Mia was hooked up to a machine and could only walk a little bit around the hospital room for several days and got so frustrated, Jaime kept her occupied.

Now Mia is home and the seizures are under control, but there have been difficulties with the doctor, the day care and the pharmacy. Jaime has researched Mia's diet, tried to decipher her MRI and been her advocate in every way possible. Aaron and I and all of Jaime's family and friends have tried to help, but when it comes right down to it, Jaime does what she has to do. She is a great mom.

Jaime is committed to trying the Keto diet which is helpful in controlling seizures. I eliminated the ice cream, cookies and ice pops from my house. We started trying to figure out what Mia could eat. I pretended I was just out of ice cream, but one day she said, "I can't have any sugar" and she asked me, "If I have another (special) cookie, will I get the shakes?" I can't even stick to a diet long enough to lose 5 pounds but this little girl is following the rules and taking the nasty medicine twice a day mostly without complaint.

Jaime called me the other day to borrow a potato masher. I said, "Are you making mashed potatoes? Mia can't have that." I brought the masher to her house and she started busily mashing cauliflower to look like mashed potatoes. I liked them, but my daughter has never liked vegetables besides potatoes, green beans and an occasional roasted carrot. The whole family ate cauliflower that night. Jaime said she had to put meat and gravy with every bite, but Mia ate it. She didn't have as much luck with cauliflower "mac and cheese." Mia said she wante Kraft. I love my brave girls.

Tuberous Sclerosis Complex

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.