Productive Appointment

Whenever we get packed up and hit the road for our 6-hour+ car trip for a neurology checkup, I always question, "is this really worth it? Can't we find a suitable doctor closer to home?" I mean, I know she's a Dravet expert and I really trust and like her, but dude- this is a big trip....
Then we go to our appointment.... Yes. It is worth it. This doctor is worth it; this facility is worth it. (Besides, we get to stay with grandma and grandpa and see lots of other friends and family.)

Yesterday we had a check-up with the neurologist. She is pleased with Melanie's continued progress. We discussed her recent increase in seizure frequency, and how mood and behavior issues have ramped up along with that. I know some Dravet families accept some breakthrough seizures with lowered medication, in order not to interfere with development, cognition, etc. Unfortunately, seizure activity itself messes with Melanie, so we need to increase meds to keep her moving forward. Fortunately, she doesn't currently need toxic doses to control most of those seizures. She has been gaining weight, while not increasing- or at times even decreasing all her meds. According to body weight, she is on 1/2, 1/3, or less of the doses she was on a year or two ago. This is great news for her body! Fewer dangerous pharmaceuticals= healthier, freer body and brain.

That said, we will hopefully be increasing her (virtually no-side-effect) Wonder Drug, if her labs say it's safe. We discussed other options as well. We plan to add a supplement which has improved seizure control for many other Dravet kids recently. And we have started to wean her newest drug, which can be a dangerous one and probably hasn't done much to help her anyway.

I asked the doctor for her thoughts on medical cannabis, and she gave a very honest answer. Essentially, she admitted the lack of controlled studies, but did not discount the mountains of anecdotal evidences. She said if it were on the ballot in her state, she would vote yes and would support any family who would want to try it. She said she'd rather take mmj than depakote, but she'd rather take Keppra than mmj. Personally, I'd rather take mmj than anything sold by Big Pharma, but I'm coming from a different perspective and experience.

The doctor once again commented on Melanie's hyper-flexibility and her pronating feet and in-toeing. Basically, at age 5, she's still saying, "We'll have to watch that."

Overall, it was a very good and productive appointment. We have many plans for next steps and possible next steps, and I feel good about them. I am hopeful that we can help Melanie with some safer, natural supplements, rather than going on to new drugs or more drugs. I pray she continues to respond well to these less extreme treatments! This is not the norm for Dravet kids. Praise God.

DS stands for Don't Settle (down)!

When Melanie was diagnosed with Dravet Syndrome, we were all diagnosed with a lifetime of excitement and change! Can't get too comfortable for too long. One of Daddy's catch phrases, since I've known him has been, "If you're not scared, you're not living." Well heck, I'm livin' every day!

So, what's the change? Well, it's layered. Obviously we're out of our two-year stint of no non-febrile generalized clonic seizures (which began when we added WonderDrug, Diamox). Wwwhhhaat? Sorry, my vocabulary has changed since becoming Melanie's mom. This is what that sentence meant:
Feb. 2011: Dr. H put Melanie on diamox, an unorthodox choice, as it is an old diuretic, mostly used for mountain sickness. He thought it might help with seizures and ataxia.
*cha-ching* jackpot struck
Feb. 2011 - June 2013: Melanie only ever had a (big) seizure with illness: usually, but not always coinciding with the initial immune response (i.e. before symptoms).
June 2013 - Present: Five seizures not triggered by illness.

I'm also noticing poor behaviors in the days leading up to a seizure. But today I gave this some serious "momtuition" thought. If bad behaviors coincide with seizure activity, and she has actually been exhibiting these behaviors non-stop (or slowly worsening) for at least a few weeks, and seizures are coming more and more randomly.... Ok, when I list it all out like that, I feel dumb for not seeing it before. She needs a med change. But wait! I'm not so dumb after all: All of her seizures (now and in years past) happen in the late afternoon/evening. Annnd, she is always chipper in the morning, but becomes increasingly squealy and ill-behaved as the day wears on. *lightbulb* She needs something midday. So, since I've been successful at it in the past, I'm going to play neurologist again tomorrow and go ahead and add a 1/4 pill of diamox at lunch tomorrow.

Will let you know how our cute little ginea pig fares.

P.S. Melanie had her first day of horseback therapy today!  She had so much fun, and we are so excited to keep doing this. Praying for better strength, muscle tone and posture so she can suck in that low-tone little belly!

All the horses wore costumes today. Melanie's was a hula dancer.