As you have probably noticed, I have been a little quiet with blogging lately. If you know me, that means because there are not great successes to share. While at 3 months, we saw at least a 30% reduction in Maggie's seizures, since then, I can honestly say, there is not much worth sharing. I felt like we made 3 steps forward, but have gone 2 steps back. The positive is that we have still moved forward in all of this. For a while now, we have known we are not making the headway we would like to, but there are so many stinkin variables that we have been unsure what (if anything) we should change up. For the past few months, she has been working on these terrible 2 year molars. At times, it has been absolutely miserable. We have also been in the lllooooooooonnnnnnnggggggggggg process of weaning her off her 2nd pharmaceutical. In this wean process, we have had to stay on top of detoxing her liver with our manual therapy. The dilemma has been do we just continue to hold our own for a while until her teeth get in and we are weaned off the pharmas or do we change some things up now?? and beyond that, what do we change up???
There have been a few option we had been pondering. Finally, I took some of the oils into our therapy and had them help me "test" them on her for dosages and what to do. The conclusion they came up with was right on par with what I was feeling we needed to do, so that was very affirming. They did help me figure out the specifics a little more though.
So...our game plan over the next few weeks....
-Continue to the Sabril wean (we have about 12 weeks left as we stay the course)
-Instead of our IMT (therapy) every 2 weeks, we will go weekly for a while to stay on top of her liver detoxing and to continue to cover more ground
-Add THC-a to her mix. This is another form of cannabis oil. THC-a is a different cannabinoid in the plant that is anti-spasmodic. Another good friend of ours started on THC-a before starting CW (Charlotte's Web), and Millie's infantile spasms have essentially disappeared. For those wondering, THC-a is actually different that THC. We have started her at .02 ml (which is nearly nothing), working her up to 3x/day. Since we started, I am already seeing more smiles (and some laughter) again, and over all, she seems more content and her withitness is improving again. Encouraging and exciting!! Spasms?? Hard to tell. We'll probably plan to count again soon.
-And the final action plan is to decrease her CW to about 2/3 of where we currently are. Interestingly enough, as it builds up in their system, we are finding that kids are having better seizure control once they go back down to a lower dose. Hmmm...
-We also will be having PT, OT, and ST coming out to the home this week and will be getting evaluated next week at the Anchor Center (a premier vision therapy center in Denver)
So we are anxious to see how this changes will help her improve over the coming weeks. It'll be nice to feel like we are moving uphill again instead of just treading water.
In other news....I hate politics!
And....we are very excited to have family out here (lots of them!) over the coming weeks!!
Side note...Maggie's 2nd birthday is coming up and it's a PURPLE DAY. I never give enough heads up, but this time I am. Make sure your laundry is washed and ready for May 15th!