At 5 PM and 10 PM today KELOLAND news did an update on the status of medical marijuana which included a segment on Luella. If you didn’t catch it live you can view the 5 PM clip online here:
To summarize the story (as it pertains to Luella) very briefly, starting in July we’ll have access to medical marijuana here in MN. We are very grateful to soon have access to this treatment option that has worked so well for so many other kids with Dravet syndrome. However, after much careful consideration we have decided not to utilize medical marijuana initially. This may be a surprise to some after all the advocating we’ve done for medical marijuana access.
So why aren’t we using medical marijuana now? The biggest reason is the improvement in seizure control we’ve already achieved. For the past two years Luella was averaging a seizure per week. Almost all of these seizures required her rescue med to stop and supplemental oxygen to keep her O2 up. A seizure a week was too frequent for our comfort so we eagerly anticipated access to medical marijuana.
However, during these past two years we did not simply wait for medical marijuana to become available. We continued to try and fail other AEDs (antiepileptic drugs) and AED doses. At this point in our battle with Dravet the odds of any current AED helping control her seizures is slim, but not zero. We continued to pray that we would find something to help her before medical marijuana was available.
We are happy to report that last Oct we did find something (Diamox) that has (so far) made a big improvement in Luella’s seizure control. Her seizure frequency had decreased to one seizure per month on average. Additionally since Oct all but two of her seizures have stopped on their own in under five minutes without a rescue med! Seizures that self resolve are a lot easier on Luella and less stressful for us. Her shortened seizures have also meant that we’re not needing to use supplemental oxygen to keep her O2 up during and after her seizures.
Could medical marijuana improve her seizure control even more? Probably, but it’s not guaranteed. There’s a cost to any treatment change. The obvious cost is financial. Since medical marijuana is not covered by insurance it means that it would create a significant financial burden for us to utilize it. I don’t believe the cost would be insurmountable, but we live on a pretty tight budget as it is.
I’ll list just a couple non-obvious costs that come to mind. What if we traveled out of state with medical marijuana? Could a routine traffic stop get us into legal trouble if Luella’s medical marijuana was discovered (since it’s not legal everywhere yet)? What if far from home and we drop/spill her medical marijuana (I’ve got four kids in total, so the odds of things getting broken in our house is actually fairly high :)? Medical marijuana is not something you just drop into your local pharmacy and get. The only place we could buy medical marijuana is MN, and even here we’d have to drive a couple hours to access it.
Obviously I’d do whatever it takes to save Luella’s life, or to give her a quality of life. But how much additional improvement would we see with medical marijuana? Would it cut her seizures down from one a month to one every two months, every three months or more? There’s only one way to find out and that would be to try it and see.
The sad truth is that kids with Dravet syndrome seldom stay easy and constant for long. How long will our Diamox honeymoon last? Months? Years? Once again I don’t know. The most likely scenario that is that sooner or later Luella’s seizures will get worse again (more frequent and/or longer in duration). When that happens I am so grateful that we have legal access to medical marijuana right here in MN.
Sorry for the long winded post. To sum it up, like any other parent we are doing the best we can for our child with the information and resources we have. When we feel it’s in Luella’s best interest to utilize medical marijuana is when we will try it.
Thank you to all of you that helped in legalizing medical marijuana here. Even though we don’t need it to save Luella’s life today, we know other families in MN that so desperately need access to this and need that access now. Thank you on behalf of everyone that has waited so long for this promising treatment option.