Tuesday, February 17, 2015

Is It Working?

Two weeks ago Julia went green and started medical marijuana (Haleigh's Hope to be exact) to treat her seizures.

First and foremost, we've received TONS of support - mountains, mountain ranges of support for this decision - and for that we are incredibly humbled and grateful and super boosted up! Thank you support!

In the past couple of days many of our mountains-of-support have been asking us the million dollar question: So, is it working????

And my answer, which, because I am a pleaser, I so desperately want to provide is... Ummm, I think so?

I hate being vague, but this is a tough question to answer at this point.

Tough for a few reasons:

1. Julia is non-verbal. The non-verbal issue doesn't get a ton of air time from me, sometimes I even forget she is non-verbal because she is so great at finding ways to communicate her needs. But in moments like this when I would so love to pick her brain and ask her "HOW DO YOU FEEL????" I am reminded (frustratingly) that we don't have this avenue of clear communication and understanding available to us. So we do our best to decipher and interpret her behavior to determine how she might be feeling.  For example: She seemed calm today. Oh that's great! Calm is great! Wait, unless she is calm because she is sick. Do you think she is sick, did she act sick?  Or was it a good calm like calm because the marijuana is working? What kind of calm are we talking about????
And well, it's an imperfect science to say the least.

2. It's only been two weeks and she is on a tiny, tiny dose.  I think we will need more time and possible tweaking of both the amount and CBD:THC ratio to land on the optimal dosage for Jules - and well, you can't do much to rush time, trust me, I've tried. So the plan is we will call her MMJ doc (I don't know if that's what this doctor wants to be referred as, but in our house she's the MMJ doc), we will call her on Monday, give her all of our impressions and observations, and see how she wants to proceed. (Side note: a few people have asked me how this whole thing works with our other doctors - and all I can say is that both our pediatrician and neurologist work for large health care companies and are not allowed to give much feedback on our MMJ journey - so we are just keeping them informed but not getting any sort of guidance from them - I hope one day that will change.)

3. Julia doesn't have a ton of seizures (thank you Jesus!). I wrote about this before, but Julia is a little different than most of the kids currently using medical marijuana for seizures in that she doesn't have uncontrollable seizures - nor does she have daily seizures, even off of medications. Basically she is prone to having seizures because of her unique brain and she has them frequently enough to need to be on something to try to prevent them. But she does not have them frequently enough that I can tell after two weeks whether or not there has been a decrease in seizure activity.  We have chosen to use medical marijuana as a treatment option because we don't like the side effects of other pharmaceutical anti-seizure medication she has been on for the past seven years AND because it is an option for us here in Colorado. We wish this was an option for every family in every state to decide upon.  Many families have packed up their lives and moved to Colorado to give their kiddos a chance on medical marijuana - mostly because nothing else has worked.  We hope that through our pursuit of this option and in sharing our story, we can play a tiny part in making this option available for ALL families to try - no matter what state they live in!!!

So those are the reason it is hard to say for sure if it is working or not. But here is one more thing I can say for sure: It isn't making things worse!

Last month when Julia had her scary seizure that landed us in the ER and started the chain of events that led us to Haleigh's Hope, we had to temporarily re-start her on Keppra. One day on a very low dose of Keppra and she was a wreck. She could no longer walk - she lost all of her balance and couldn't take two steps without crashing. And her agitation skyrocketed. She was hitting herself and pulling out her hair, acting like it was painful to be in her own skin. It was heartbreaking to watch.

Two weeks into Haleigh's Hope (with Keppra gone again - yay!) she is walking like a champ, balanced and confident! And her agitation seems to be down. Oh and no seizures (which like I said before, doesn't tell us a ton, but no seizures is a heck of a lot better than some or many).

So that is how we are getting to our answer right now about if this is working for her... We think it is working because we aren't seeing awful side effects. We think this is working because we are maybe even seeing some positive side effects. And we think this is working because she is off all her other medications and hasn't had a seizure!

We can't know what tomorrow will bring, but for today will take that as a victory my friends! Indeed we will!


#haleighshope #marijuanaismedicine #legalizemedicalmarijuana #cureepilepsy


6 comments:

  1. Sounds like she is happier!! Keep us posted on the progress!

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    1. Thanks so much!!! I definitely will!

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  2. Hi, Laurie. I am glad to hear that so far, so good. Has Julia ever used PECS images to communicate feelings? Apologies if I'm mentioning something you've already considered/tried. They were really helpful to Max for communicating before he got a Dynavox and then an Ipad.

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    1. Thank you Ellen - we haven't tried that but I will be looking into it today!!!

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