Today is day I would not want to repeat. And I can't help but to wonder how many more of these kinds of days lie ahead in our future... Will there be hundreds more? The unknown is so scary, but nothing is scarier than watching your baby girl go through seizures however "mild" they may be. With Lily Kate's current bout of seizures, which look like blank stares with chewing of the mouth and mild twitching, there's danger of the Partial seizure becoming a Generalized seizure. (Partial is in part of the brain and Generalized is the entire brain.) And then with a generalized seizure with her particular brain malformation there is a high risk of Status Epilepticus which is a constant state of seizing. This can be extremely damaging. So back to today... This afternoon as Lily Kate woke up from her nap she had a Partial Temporal seizure (the same kind that was shown in her recent EEG). Something about this one scared me more though so I grabbed her Emergency seizure medication (Diastat, which is essentially Vallum) and administered it. This is what her doctor has instructed us to do when a seizure goes beyond 5 minutes. Its supposed to be preventive of the seizure getting into the whole brain as I explained above. So I called 911 right after I gave it to her so they could come monitor her breathing because there is danger of it affecting the respiratory system. I just held my daughter as tight as I could and begged the Lord to help her as I heard the sirens in the background. I just kept thinking the entire time as I always do when she has a seizure "Will she be the same afterwards? Will she regress? Will she be able to say "mama" again? Is this going to wipe out all she's worked so hard to learn up to this point? Is all the work we've done to get her caught up going to be for nothing?" The seizure lasted for about 10 minutes and finally she came out of it very groggy and tired because of the Diastat. They hooked her up to oxygen, checked her vitals and glucose. Vitals were fine but glucose was low so they suggested she be taken into Methodist Children's Hospital. Our ER visit was brief and we went home with higher glucose levels. The whole time I couldn't help but to wonder if her glucose levels were low because of the Modified Atkins Diet she's on for seizure control. (The idea of the diet is that it gives the brain very little glucose to run off of thus decreasing the abnormal brain activity) We were told that of course being on a 10 grams of carbohydrates per day could affect the glucose level simply because she's not getting many carbs but that ultimately her particular glucose level wasn't the catalyst for this seizure. We aren't certain what caused this breakthrough seizure. So right now we are using modern medicine and diet to help with seizures. Lily Kate has become an Atkins dieter with her new favorite foods being chicken, CHEESE, CHEESE, avocado, hot dogs, CHEESE, EGGS, EGGS, heavy whipping cream, some berries, Atkins desserts made with stevia, and EGGS AND CHEESE. Did I mention she eats alot of eggs and cheese? Thanks the Lord she likes both of those things! So I'm hoping that eventually this diet will be a large part of her seizure control. They say it can take up to 3-6 months for it to be effective or to cancel out that its not effective. This option is way better than increasing these crazy anti-convulescent drugs that we pump her little body with. Poor baby. In the meantime please pray for NO MORE SEIZURES for Lily Kate or for God to give her better seizure control somehow. And for pregnant mommy to breathe and know that Christ reigns in moments when the storm is more than I can take. Still trusting in Him, Theresa
