As you know, Avagrace and I have spent the last 7 days in the hospital under constant video and EEG monitoring. During this time the parent stays by their child's side the entire time and is asked to push a button anytime seizure activity occurs. They weaned her off of meds and evaluated her brain activity with meds, without meds, and then as they added meds again. If the parent needs to go to the restroom or leave the room a child-life specialist, nurse, or another parent/adult who knows the child well enough to know what their seizures look like must be present. The goal of this study is to see where the seizures are starting. What the clinical (meaning outward signs of a seizure) look like on a diagnostic (EEG brain pattern) view. Many times people will have seizures or abnormal brain activity and no clinical (outward signs or symptoms) will show up. Or sometimes they will have clinical seizures (like Avagrace having one finger rapidly moving up and down in a super human pace) and the seizure is too deep within the brain to show up on the EEG. If your child has seizures, this is the time you want them to present so that you can understand them better. The one seizure we were hoping to catch, and did not, was one of her abdominal epilepsy seizures. Fortunately, we have caught this type of seizure before but we wanted to see if there were any changes.
All in all the testing went very well. We were fortunate enough to get a different kind of reading than we have in the past. This reading showed that treating Avagraces epilepsy aggressively was to an advantage in many ways, but it also taught us that some of the medications that Avagrace was on, were actually making things worse. You would think that it would be easy to tell once you start a medication if it is making things worse or better. However, with neurological symptoms that is not always the case. You see, there is usually a "honeymoon phase" when introducing a new epilepsy medication. The brain is all lovey and accepting of the new control and then like a storm gaining strength it gains resistance to the medicine or gains strength from it. It is a constant trial and error to make the right cocktail of Anti-Epileptic Drugs. Ideally one medication will work, but usually with intractable cases such as Avagrace's it takes 2 or 3 or more. (Avagrace was on four and at one point in our journey, before I knew to advocate against so many drugs, she was on 6). Going above three lines of medication is never the goal because with each added medication, the chances of SUDEP (sudden unexplained death in epilepsy patients) or the chance for status seizures (seizures that don't stop on their own or even after one or two doses of rescue medications) increases because your body because "immune" in a sense to the medications.
So, we went into the hospital off all meds. THIS IS NEVER A GOOD IDEA because it can cause shock and many other complications. One of the doctors insisted that we stop cold turkey two days before the test. Then when we got there the doctor on the floor freaked out (as we did prior) because of course her seizures were out of control and the likelihood of having status seizures was very high. So she immediately started her on some of her meds and then slowly (the proper way) decreased meds until we were back to no meds.
In doing this we learned several things. First we learned that treating Avagrace's disorder very aggressively 2009-2010 was VERY GOOD for her. Her EEG from then, until now, is still so remarkably better that the doctors were constantly joking that I had brought the wrong kid to the hospital. The second thing that we learned is that Avagrace is an over achiever in the sense that her brain is displaying two distinct abnormal brain wave patterns that are associated with two distinct forms of intractable epilepsy. The doctors that were present were so baffled because they had never seen this before. So they were more than happy to discuss things with our doctors in Texas. This alone was a miracle because one of the doctors here was not happy that we were seeing two separate teams and he even admitted that it was a pride thing! According to both teams of doctors there are likely only a handful of patients to ever display this type of EEG. They are currently searching to see if there are any other known cases so that we can learn from them and also share what we have learned to see if anything helped or made things worse for them. Lastly, we learned that some of the medications that Avagrace was taking prior to our stay were making her seizures worse.
One of the biggest challenges of intractable epilepsy is that it is resistant to medications and that ALL FDA approved anti-epileptic drugs have the potential to cause seizures. Moreover what works for one patient does not always work for another and nobody really knows why. We were very lucky to learn that Avagrace was having an adverse reaction to one or more of her seizure medications.
Lastly, we learned that Avagrace is in a "honeymoon" period right now due to just having the Vagus Nerve Stimulator removed and due to stopping THREE lines of Anti-epileptic drugs. This means that she is, for the first time in 6 years, on just ONE anti-epileptic drug. We still have three lines of rescue meds, oxygen, her chair, her helmet, suction, and everything else to treat her when she does seize. But for a while, she will only be on one medication which is a miracle in itself because that means less negative side effects and more chances for her to progress in other areas like speech, physical, occupational, and cognitive abilities. (All of these areas are affected by these medications that are created to alter brain waves and electricity in the brain).
So while all of this is good there is some unfortunate news as well. We also learned that there was a lot of slowing in her brain activity. And due to the type of slowing that it is, we know that it is caused from lesions and scar tissue due to the incredible amount of seizure activity that happens in her brain on a daily basis. There is also the possibility that she may have suffered strokes during some of her seizures but we will not know that until they are able to do a more advanced type of MRI (not sure of the exact name) and some other scans and tests. She has had some of these tests before but technology continues to improve and unfortunately her seizures do to, so it is very important that we check her brain every year or other year to see where we stand scientifically. These tests will likely take place in Texas (pray that our insurance agrees with us because Texas is much better equipped to handle this and has many technologies that Oklahoma does not have). After those tests we will then plan on the possibility of brain surgery to fix the lesions or if it is too risky we will just leave them as is.
However, before I consider brain surgery I desperately want to raise the funds to go to Colorado. Medical Marijuana, specifically the cannabis portion of marijuana has been shown by the FDA and so many others to reverse the damage in the brain like Avagrace's lesions. In fact, the government, despite their constant efforts to tell us that Marijuana is horrible, actually owns a patent for Cannabis. In that patent it states that they are well aware of its healing properties that the cannabis has in the brain!
The most devastating part of our stay, and the part that I am not sharing with our kids, nor am I choosing to accept, is that it is very unlikely for Avagrace to make it out of her teens. So I am asking you to refute this as well. Surround her in prayer and please, if you can help in anyway, to get us to Colorado, my daughter is an amazing human being. She deserves a chance at healing and living as does everyone in our "free" country and in this world! I urge you to call your senators, vote with an educated decision, read, learn, share, and if you are able to donate to our fundraiser so that we can afford our first few months in Colorado, to give Charlottes Web a try, than please do!
There are so many children like my daughter, and it will take a revolution and a community that loves the children of this world, to give them a chance at life!