Hope on the horizon!

I heard back from Olivia's neuro about our current issues (see last post for more specifics), and had several things to say. First off, we are taking Olivia back down to her previous dose of zonisamide. This is the med that we increased right after Olivia's most recent hospital visit and status seizure. Next, she said (for at least the 3rd or 4th time) that we need to "Seriously" consider more Dravet-specific treatments for Olivia, including a couple meds we haven't tried yet as well as possibly the Keto/MAD (modified Atkins diet) Diet. She feels that Olivia's current amount of daily seizures and status seizures (and possibly even her meds) are too greatly inhibiting her development.

Now, I have coined a term for all this based on my last two years of living and researching Dravet. I call it the "med change rabbit hole." It is such a guessing game and sometimes a giant muckety-muck when it comes to changing meds for epileptics, especially severe epileptics like Olivia. It is like the rabbit hole because once you go in, it seems like a long darkness that is seemingly impossible to get out of. And, you can VERY easily end up worse than better.

I have been praying A LOT about Olivia and begging God for guidance--pleading with him to make my instincts/intuition come through clearly and that they be RIGHT. I need something bigger than myself to help me fight this battle for Olivia. God is the one who has always been with me, so He is my natural choice.

I already knew (since the beginning of this Dravet journey) that the diet was something we would do at some point. So, here we are at that point. One of the most exciting turn of events is the growing use of MAD. It is, just as the name implies, a modified version of a ketosis-inducing diet. Just like all the meds, the diet-in any form-doesn't work for everyone. It is a huge life change and not something to be entered into lightly. But, the MAD versus the full Keto is a much more "do-able" option. It is simpler, has more palatable food choices and doesn't require the rigorous measuring that full Keto does. Additionally, I can follow the Atkins diet along with Olivia, so we can be eating the same things (which is a big deal to Olivia and just plain easier when it comes to shopping and preparing food).

I already have a great online support system for taking on the project of this diet. Many, many of my Dravet friends have been doing or have done this diet. So, they have paved the way for us. They know lots of tips, tricks and recipes. I have already received several helpful emails from one of my dear Dravet mom friends. She has even sent me some pics of approved foods she has found that are yummy treats her daughter can have. How great are my friends?? I love them so much!

We are without a nurse today, so I can't type much more as Olivia needs all my attention. I will write more when I have time. I am just feeling SO much hope in light of our new options, and not the rabbit-hole fear I have been feeling. That in itself is a thing to rejoice. Living in fear is such an awful thing.

Please continue to pray for my girl and for me to make wise choices on her behalf. I appreciate your prayers and kind wishes more than I could ever express. I hope that this finds you all enjoyably preparing for the holidays (and not stressed!).

Life in this moment...is bursting with HOPE, and as always, filled with more love than I ever imagined I would be blessed with. My precious, precious girl is the greatest gift and I get to celebrate that every single day. I am lucky enough to hear her sweet voice and get showered with her wonderful hugs and kisses. I am so fortunate to be able to hold her hand as we walk together. And, I get the privilege of helping her learn new things. I. AM. BLESSED. INDEED.

All my love, -H