It has been quite a while since I have updated the blog. We have made some big decisions and have some new things going on with Piper.
Piper has been off seizure medications and is only using Cannabis oil for seizure control, it is pretty amazing! The last wean in October was pretty rough, but seizure patterns leveled out and we were able to establish a new baseline. She is currently having around the same or better control, without the horrible vision loss side effects. She actually has days where we see no activity at all!! The cannabis oil is really working!
So you would assume things are going well...
We are really surprised to see some new changes in mood, pain and irritability. Since her first seizure, Piper has been on pharmaceuticals, most with sedating side effects. We really have never seen her true personality or seen her communicate that she is in real pain. We have seen a new child, in good ways and in really bad ways. Since she has spent most of her life sedated, we can now see that many of her issues cause her a lot of pain and discomfort. She now has crying episodes that can last non stop for days at a time. These are full force painful screaming tantrum like episodes and there is absolutely nothing you can do but wait it out. The longest one lasted every waking hour for 5 days. There was absolutely nothing we could do to calm her down and trust me, we tried EVERYTHING. We have gone down the list of reasons for the screaming and after 4 months we think we have figured it out. We first suspected GI issues but during her last 72 hour stretch of screaming we took her to the ER and had a stomach X-ray and learned that was not the problem. We have methodically been keeping notes of when they occur and what variables are the same from the previous episode. We have consistently seen that crying episodes are caused by NOT having a seizure for an extended period of time. It seems that there is so much activity in her brain that is not able to be "released" via seizure that it builds up and causes extreme pain. Every crying episode is followed by a large seizure and then she is back to her happy self.
We are now at the point where there are many days where we pray for a seizure....just to make the crying go away. It has gotten to the point where our whole family's quality of life is being affected. We haven't been able to take her anywhere because the crying is so bad. We alternate taking Evan to do fun stuff and try to keep him away from the chaos. He learned very quickly that screaming gets Piper attention so he does it too. We have tried pretty much everything, the only thing that has helped at all, surprisingly is essential oils. They have helped with a lot of her ailments but we think that the pain may be a little more severe and we need to do something to help her get some relief. So with all of these new issues, we have been doing research and talking to our Neurologist about the best plan of action.
We have decided that a VNS implant is our best option for seizure and mood control. We don't want to put her on any medication for mood, especially since we saw how sedated she really was. The VNS is something we have always considered but she has never been big enough for the implant until now. The VNS is an implant on her Vagus nerve and is often called a "pacemaker" for the brain. It is designed to prevent seizures by sending mild impulses of electrical energy to the brain. With Piper's build up of extra energy in her brain, the VNS will most likely help clear some of the "noise" so she can rest. You can use a magnet and swipe the device when she is having a seizure and it will slow it down or stop it completely. We can also train Toby to swipe the magnet too! We have done months of research and talked to a lot of people who said it really helped with mood. We are praying it works for both seizures and mood. To learn more about the implant click here
The surgery will be on March 31 and she will also have a MRI and strabismus surgery. Since we are putting her under we wanted to get it all done at once. The strabismus surgery is a simple procedure that will help strengthened the muscles in her eyes and hopefully help with the crossing. It could possibly help with her gross motor skills and her vision.
We have a very busy, stressful month and could use prayers. We know this is a great option for her with no side effects and slight risk for infection. It is still not easy to know your child is going to have surgery and a device placed in their body. Please pray that the combination of Cannabis oil and the VNS will finally be the answer!