"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Wednesday, May 15, 2013

Jim's Medical Marijuana Post / Hot Day + Water = Seizure

As many of you know I (Heather) write these blog entries. Jim has little editorial control over what I post - he usually helps me proofread but he doesn't ever get to write what's on HIS mind. I thought it would only be fair for me to post an entry on his behalf. I'd also like to say that I could not ride this rollercoaster that is Luella's life without the love of MY life! Jim tirelessly researches new treatment options as well as stays up while Luella has her restless nights - which have been many lately - ready to comfort her when she calls. This allows me to get up early with the other kids and to be able to function during the day. I don't know how he survives on the amount of sleep he gets!

One quick Luella update before I turn this post over to Jim. She had another seizure last night. Jim was home alone with the kids and they were begging him to let them run through our sprinkler. Of course Luella wanted to join in too. He thought a few runs by the sprinkler would be ok, unfortunately he was wrong. Although Luella didn't get that wet and only played by the sprinkler a few minutes, that cool water was enough to send her into a seizure. As usual, a spray of midazolam quickly stopped the seizure. Hopefully we can get better seizure control before the summer swimming season is over.... she LOVES the water! I also hate to avoid the water because the other kids all love to swim too and it's not fair to them.

The words below are all Jim’s, but I do agree that this is a treatment option that I’d like to have available for Luella.

Jim's post:

Medical Marijuana is the most promising treatment option for Dravet Syndrome currently available. Except of course it isn't available everywhere, including MN. However there are bills introduced (http://www.startribune.com/politics/statelocal/205902971.html) that would make it legal here. With the majority of Minnesotans and legislators supporting medical marijuana you think passing this legislation would be easy, but unfortunately Gov Dayton isn't on board yet. Hopefully he’ll see the light soon if enough of us stand up for the rights of chronically ill patients like Luella.

The medical marijuana that helps Dravet Syndrome patients is the nonpsychoactive form (CBD), so there’s no risk of getting high. It’s just another plain old boring oral medication (drops) that you use like any other drug. The biggest difference that it’s more effective and it works without the devastating negative side effects that most of the Dravet drugs have.

Of course there’s no guarantee that medical marijuana would be Luella’s miracle drug, but if you watched her have just one seizure you’d probably agree that it seems unusually cruel to deny her what is probably her best shot at a normal life. When it comes to Luella treatments I’m pro-anything that has a good chance of helping her. I want all the options available. Medical marijuana should be one of those options we could try.

We are fortunate that Luella is currently doing relatively well. But what if her current drugs stop working? What if her condition suddenly deteriorates (which is not uncommon in Dravet Syndrome)? If that happens we won’t have years to start the legislative process. Medical marijuana legislation needs to move forward now, so that we have half a chance of getting access to medical marijuana when we really need it.

If you’ve got a spare hour this interesting PBS documentary looks at the pros and cons of medical marijuana from a scientific point of view: http://watch.montanapbs.org/video/1825223761/

This is one of many Dravet specific medical marijuana success stories. It’d be nice if Luella could go to the pool without a high risk of having a seizure: http://www.cnn.com/2012/12/10/health/medical-marijuana-child


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