Monday, April 25, 2016

It's working!!!!!

OK, I can write it and say it with certainty now. The CBD oil is working! Elin has been seizure free for over a month- exactly the same amount of time she has been taking the oil. This is by far the best result we have ever had from any drug she has tried. We can tell there are times when her body "wants" to have a seizure- she gets spacey or a little apneic but she doesn't go into a full seizure, we can snap her out of it. These episodes have been pretty regular and are following her prior seizure pattern of about one or two days every week- usually during the weekend. BUT she isn't having a seizure- or at least not a scary life-threatening one.

We kept our expectations in check during the first few weeks. I wouldn't even tell people that I thought it was working for fear that my utterance of this wonderful news would ruin everything and she would go right back into her seizure pattern. Now I feel more confident in announcing that YES it is working and we couldn't be happier. She is happy too, she laughs more and eats more (sometimes) and generally SLEEPS better. Everything is good right now.

She had surgery two weeks ago to remove a sebaceous cyst on her temple right next to her implant. It went very well and the surgeon was able to remove the entire cyst. He said he has done over 1000 CI surgeries and never once has anything like this occurred. I told him it's because everything about Elin is special. He agreed and we hope it doesn't grow back.

So now what? Well, we are continuing to work with our naturopath and I'm hoping to start the process to wean Elin off some of her pharmaceuticals. We need to do it slowly and only one drug at a time so it will be a long process but with results like this I can't wait to see how much more alive she can become with out all the drugs.

The company that has been helping us and supplying us with the oil has been another amazing gift. These guys are so generous, friendly, professional, and kind I can't even begin tell you what a positive experience I have had so far. For the first time in forever I feel like there might be a light at the end of the tunnel and perhaps we can get our daughter off some (if not all) of her AED's and bring her back out of a fog of pharmaceuticals. I can't even imagine how this one simple plant could quite possibly change the course of her life. The possibilities are endless and her future is bright.

We have seen cognitive changes in Elin just from adding the oil. She has started signing more for what she wants; she is verbalizing more and trying to say things (like mama!!!!); she is more motivated to move and she is generally happier. I'm so glad I can write a positive blog post and share some wonderful news with our "village" of supporters. It's all sunshine and rainbows in the Magnuson house right now.