Good evening Warriors! We have had a couple doctors appointments this week, so I wanted to share what is going on with everyone. We saw the epileptologist, and he was quite shocked by how unsteady Wyatt has become. It happened to be one of Wyatts bad days, actually the worst so far. I am glad that he got to see it though, instead of me wondering if he thinks we are exaggerating like parents sometimes do. Because we dont know if the ataxia is a medication thing or a brain thing, we have decided to begin weaning Wyatt off of one of the more harmful, less effective (for him) medications, in hopes of relieving some of the ataxia his little body has to deal with. So far, so good! We expect to see an increase in seizure activity, however we are hopeful that the benefits will outweigh the risks in this case. He has been fighting a nasty cold for a month now, and this specific medicine is one of the immune supressants he is on. We are hopeful that his immune system will be able to rebuild a little, but we will just have to see. We have a plan in place if this does not work, and it of course involves different medication and a possible major diet change. There will be a clinical trial for CBD oil coming up. We are unsure of when exactly, as they are still ironing out details, but we were able to get Wyatt signed up for it. We are prayerful that this will be the answer we are searching for, in order to decrease seizure activity, while keeping our boy out of a zombie like state. Because insurance denied the 24 hour EEG, we have no idea how many seizures he is having. The newest medication we added to the cocktail has done a great job of decreasing seizure strength, but not so much the actual seizures. This means that he has them, but we can only feel them, not see them. While he snuggles up to us, we feel his little body going, like he is being shocked in isolated areas over and over. For example, his arm will seize, then his leg, then the other arm, then a foot, etc. This is happening more often than not, so we suspect that wile the strength decreased, the overall number may have increased. However, there is no way to be sure of this without the 24 hour EEG. Frustrating isnt it? So while we have no other options available, we will schedule a regular EEG (typically only 1 hour) to see what shows up. As awful as it may sound, we are hoping to catch him in a bad hour, so we have a more accurate idea of what is happening. We discussed the genetic testing a little bit. We did the blood draw just before Christmas, so it is a waiting game until they finish it. I asked how the protocol may change if he does have the PME gene, and was told that it wont. We are already doing everything we can, so if the test comes back positive, all we do is hunker down for the long haul, at least knowing what may come our way. If the test comes back negative, he wants to do more in depth metabolic testing. At that point, we are faced with a very real possibility of never finding out what is causing this. On the ever changing list of things to do, we have added a visit to an amazing eye specialist at the Casey Eye Institute. Although Wyatt saw a pediatric opthamologist last year, Dr. Wray wants him seen by a specialist that is looking for specific things that would point to epilepsy. Again, modern medicine doesnt fail to impress. Wyatt is good. In fact, he is great! He is perfect, and amazing, and inspiring, and beautiful. He shines a light on those around him, and you cant help but to rejoice with him every day in the small things. He offers us a new perspective and we are all better, smarter, and kinder for it. As we end the work week and move into the weekend, remember that when something goes wrong in your life, just yell, plot twist! and move on. Life is too short to worry all the time! -Katie
Posted on: Fri, 16 Jan 2015 06:52:32 +0000
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