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.