Update in more detail

As stated in my last post, Maddie is trialing a new anti-epileptic drug, Banzel. She started it on Oct 16th and we have increased the dose since then. Immediately upon increasing the dose, we stopped seeing her worst seizures. She had been having them 4-6 times daily. She was also having hundreds of head drops daily (coming in 10-15 minute clusters). These have decreased to about a handful of drops daily. Maybe even just two.

She is still having what we call side to side seizures, where her eyes deviate very hard to one side repeatedly. But they are dramatically decreased as well. There is another behavior that we think is a seizure which she continues to have also, but we can interrupt it (though it resumes after interruption) and it is happening less frequently now too.

So for the first time in a very VERY long time, we are seeing big moves in the right direction. We are incredibly hopeful that this will be the drug combo that finally gets our little girl seizure free. But we are also extremely scared and nervous that she will soon become used to this drug as she has in the past.

This is the first time since December 2008 that she has not had clusters of myoclonic jerks daily. We had one period of two days in March 2009. That is it. And she has not had a strong myoclonic since Monday evening. I cannot tell you how amazing that is for us.

We’d love to think that this is the beginning of her healing, but even if it isn’t, to get to see my little girl without these seizures that knock her down to the ground for even a few days is a huge blessing. In a strange coincidence, Brandon and I had just decided it was time to just suck it up and assume that this was how things were going to continue, and we bought a bunch of gymnastics mats and soft gates to make a safe place for her to practice walking in our home.

The mats arrived just as the big seizures stopped and she has been spending hours daily on her feet with no assistance. She still falls, but much more safely, on the mats. And she is building strength and stamina. And maybe even balance. Balance has been her biggest stumbling block, no pun intended, for a very long time. Even though she seemed to understand how to walk and was motivated to do so, her balance was just not good enough to allow her to walk safely.

Maybe the best part though is that she just seems to be more with us now. She makes better eye contact all the time. She is much more aware of her surroundings. She notices things and points to what she wants. She is trying to verbalize a bit, but that is not coming fast. She just seems happier and more interested in everything. When we put her down to play, she will now get up and walk or scoot to what she wants to play with rather than waiting for us to hand her something. I’m guessing most of you with normal children wouldn’t have imagined that was how bad things had been for her. But in reality, she has been functioning cognitively like an infant for awhile. And she has had less interest in things than most infants. So this is a huge change for us and we are just thrilled to see it. As I mentioned before, we have intense fear that it will be fleeting. But we are just trying to enjoy it, make the most of it, and pray that it continues.

In other aspects of our life, things are busy and interesting. Brandon is working more than I could have ever thought possible. We only see him a bit more than when we lived in separate cities. But we are happy to know that most nights we are all safely in bed in the same house.

This week we will head to Myrtle Beach again for his Marine Corps Ball. Mom and Lance will come with us again to watch Maddie and hopefully have some fun down in Myrtle Beach. So we look forward to enjoying a bit of time together this week and  weekend. It will also be nice to get out of our house for a bit. The house we live in on base in currently undergoing renovation while we live in it. Our house is currently surrounded by chain link fences on both sides and we can only enter and exit via the front door. Some days they are working on both sides at the same time and it can be quite loud. Hopefully the renovations will be done by Christmas.

I am running a half marathon in Wilmington in early November and another at Kiawah in early December. Not quite sure what I was thinking, but it will be a fun experiment. Looking forward to mid-December when I can go back to running just for fun and not having to follow a training schedule. I recently ran a 10k that I really enjoyed. I think that is the length race I’d like to concentrate on improving. That will likely be my focus after I complete the two half-marathons.

I’ll try to post some pics and videos soon!

Love to everyone,

Liz, Brandon, and Maddie

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Quick Update

So I feel guilty even writing this quick post because I have been so lackadaisical about posting lately. Frankly, that has been because things have not been good. And while I can often find ways to sugarcoat things or find the positives to share….. lately, seizure-wise, that has been difficult. It has also been tough to find positives developmentally. She has been stuck in a rut, and I have even been questioning the value of school because there has been no forward motion whatsoever.

I promise to go into more detail later about all that she has been going through lately (lots of med changes). But the reason for posting now is that we are seeing some significant seizure improvement for the first time in a very long time. She has recently started a drug called Banzel that I really did not have a ton of hope for.  I know of one great outcome (seizure freedom!) from this drug (in an incredibly sweet little girl, Reagan) but otherwise the reviews have been pretty negative. Even our Neuro said he did not have much hope for it, but sadly, we have very few drugs left to try.

But we are having some very encouraging results already. And her pattern has been to have good results to new anti-epileptics early-on, and then eventually her brain finds a way to seize around them. So because I believe in the power of prayer, I am asking for yours now. Please pray that this drug, Banzel, is just what we need to finally rid our amazing little girl of the seizures which have stolen everything from her. She really needs this. Brain surgery is not an option and we have very few drugs left to try.

Thanks for caring for our little girl. And I will update in more detail soon.

Love to everyone,

Liz