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New Treatments for Epilepsy
Epilepsy should really be a four-letter word. We fuc#ing hate it in this house! We’ve been watching James suffer from seizures for six years now. Six years! I’ve lost count of how many different treatments, meds, and diets that he’s been on. Some haven’t worked at all. Some have shown some promise but didn’t complete work. And some seemed to be working really well at controlling his seizures, but then stopped working as well. It’s like the seizures are stronger than whatever we throw at them. Although we sometimes start losing hope, we refuse to give up. We still believe that there is something out there, or a combination of things that will get these damn seizures under control.
Being a member of several groups on Facebook for parents of children with epilepsy, Stacy learned about CBD oil, which has shown promise in reducing and sometime eliminating seizures. We don’t know a lot about CBD oil, only that it is extracted from the marijuana plant. My first thought after I learned that it comes from marijuana was “oh, so James is going to get stoned if he starts taking it?” He would not. The CBD oil does not come from the part of the plant that gets you high when you smoke it.
Stacy found out that Rush University Medical Center in Chicago is planning on doing a study on CBD oil next year and is looking for volunteers to be part of the study, so she signed James up. We don’t know yet if he will part of the study or not. They need to go through all of the applicants and then choose the ones that they feel would be the best fit for the study.
James had an appointment with his neurologist on the 3rd and Stacy nervously mentioned the possibility that James may be part of the Rush CBD study. Nervous because she thought he would totally be against it. Much to her surprise, the neuro was fine with it. One of his other patients just recently started taking CBD oil that they purchased online. The doc is also going to a conference next month about CBD oil that he is looking forward to. Hopefully he has a positive view of CBD after the conference and doesn’t come back and say “I’m sorry, but I don’t think James should be on CBD oil.” I mean we’ve tried pretty much everything else out there, most of which is created in a lab. Why not give something produced in nature a try?
If the CBD oil doesn’t work out, there is also the possibility of starting James on medical marijuana now that the state of Illinois has finally started opening dispensaries:
Stacy knows a few people that moved to Colorado a couple of years ago so that they could start their children on medical marijuana when it was legalized there. We discussed moving, too, but we ultimately decided to stay here. If epilepsy was the only diagnosis that James had, we may have made the move, but because he has other medical issues, we would need to find new doctors and specialists for those issues. He has a good team of doctors here. It would just be too hard to start over.
We still need to research medical marijuana further and see what we need to do get James registered in the state of Illinois. From what we’ve found so far, it is a bit of a process. We might start that ball rolling after the New Year. We would also like the neurologist to be onboard with it. If he comes back from the CBD oil conference in December and is against James taking it, there is no way he would approve of James taking medical marijuana.
If that turns out to be the case, and the neuro is against CBD and marijuana to treat James’ seizures, Stacy and I will have to discuss changing neurologists. Being a part of the “parents of children with epilepsy community”, we are constantly reminded of how bad uncontrolled seizures can be. We know countless families that have lost a child to epilepsy. Just last week, a little girl named Grace was taken way too soon. She had Dravet Syndrome, which is a form of epilepsy. Her cause of death was SUDEP, or Sudden Unexplained Death in EPilepsy. She wasn’t even two years old. Please take a moment to say a prayer for Grace and her family. Also say a prayer for James and everyone else that is continuing to fight the battle against epilepsy and seizures.
Family Photos
We had our annual family photo shoot a couple of weeks ago. We haven’t received all of the photos yet, but here is a small sample.
Other News
James had an appointment last week to get his AFOs adjusted. AFOs, or ancle foot orthotics are the braces that James wears on his feet to try to get them straighter. Stacy snapped this selfie while they were waiting:
I got home from work the other night and Stacy informed me that James will not be getting Christmas or birthday gifts for a while. She said that we need to start saving our money to buy a new jogging stroller for James because he is starting to outgrow his current one. I laughed and said something like, “come on, how expensive can they be?” And then she showed me.
https://www.adaptivemall.com/adaptive-star-axiom-improv-push-chair.html
Holy sh!%! That can’t be right. A quick Google search showed me that that price was right. I know that anything special needs is expensive, but over $1,500 for what is really just a chair on wheels? Jesus! James will still be getting Christmas and birthday gifts. That would just be cruel to not give him any gifts. We will find a way to pay for the stroller. This is why we have his medical fund. Thanks to all of you that have contributed to that fund over the years. It really helps us out.
