Our little girl was diagnosed with Periventricular leukomalacia at about 40 days old. This was due to (what we think) an error by the medical staff. We were warned that this condition is permanent and odds of having seizures was pretty high.
This was in 2015. Flash forward to 2018. Ria has gone through, what seems like, a life time of treatments and therapies. From the Vojta therapy when she was 5 months old, to the current Bobath therapy which in my opinion has been more fruitful.
Ria has gone through a variation of almost every epileptic medication on the market, with no suppression of seizures. The infantile spasms were powerful and painful for her and for us to watch. We watched helplessly. This continued from 9 months of age until she was 2 years old and until now. She spent her 2nd birthday in Yonsei Severance Hospital in Seoul getting on the Ketogenic Diet.
It's been 15 months since we started the medical diet. We didn't notice anything really at the start. The EEGs showed no improvement until one bizarre week in January 2018. Ria had caught a bug at the time and her fever spiked to 39 Celsius. Hitting 40. She was hospitalized for 5 days, during which we noticed a lack of seizures.
We were in the process of deciding whether to have a really risky brain surgery, essentially snipping the brain in half, to reduce the seizures that were coming from one side of her brain. As the stress weighed on us, we didn't really think that she was seizure free for a few days while super sick.
After she was released, our Ria who was in a medically induced zombie period for most of her life started showing glimpses of intelligence. Up to that point, she couldn't walk, talk, etc and had really low intelligence. Suddenly she was showing glimpses of "normal".
It's been 6 months after this miracle. She's had an EEG that showed her improved brain function. She's developed slowly and is now on her way (we think) to a bit of freedom. She still has the occasional seizure and it still scares the living shit out of us. Not a day goes by that we don't worry about her and the problems that could happen.
She's still not walking, talking nor hitting any serious development milestones. But she's learning words, learning to walk (assisted), recognizing faces, and showing intelligence that was never present before.
This is all due to the Ketogenic Diet.
Her story isn't unique. However, our lives might be. We are a multicultural family living In South Korea. I met her mom in 2007 while I came to Korea to teach English, and we were married in 2011. We had her in 2015. We run a private school here. We work hard, including weekends, to give her a better life. We are a Ketogenic diet family.
My next few posts will be dedicated to some recipes that we use and how she likes them.
I'll try to detail the steps and everything in between.
Carry on.
