I want to start blogging on a regular basis so I can remember how things are going with Dawson with the new VNS therapy. I know, some of you are thinking what in the world is that? I will backup and give you a little history. So Dawson has been having seizures for two years now. He had his first seizure in April of 2009. We were going down Woodruff Road when we looked back and Dawson was blue and he was not breathing. We stopped in the middle of the busy road to try and find out what was going on. We called the ambulance to come get him. When we arrived at the hospital, he seemed fine just really tired. My friend Angela (her daughter Kaylen has been having seizures since she was three and she also has Trisomy 18) had told me that was how Kaylen's happened. So after much testing it was determined that he had Partial Complex Seizures. They happened the same way every time. They would start with him staring and then his oxygen saturation would drop low (some times as low as 40%) and he would turn blue. We would do vigorous stimulation and then eventually have to bag him with oxygen. He would usually be out of them in less than a minute. It was a very scary minute that seemed like an eternity. So, we finally got him on a medicine regimen of Keppra, Topamax, and Kolonpin and it had them under control. In fact he went from January 2010 to December of 2010 with none. The only reason he had one in December was he had a really bad UTI. So then in January 2011, he started having another kind of seizures. The only way that we could explain what was going on was he was "flinching" and "yelling". At first the neurologist thought it wasn't a seizure just because of the briefness of the episodes. Well these "episodes" started happening more frequently. We tried increasing medication and even changing medications. Well the seizures where not phased and on one medication they even increased. He was up to having anywhere from 5 to 20 a day. So his neurologist put us in the hospital for a long-term EEG. From that EEG, it was determined that these were a tonic seizure and some were even leading into one of the other type of seizures. The next day when she came in to discuss the results, she mentioned this new treatment for seizures that was a little different. It was a vagus nerve stimulator or a VNS. This is basically a small generator very similar to a pacemaker that is inserted surgically right under the collar bone and has leads that attach to the vagus nerve. It is called VNS Therapy and basically it gives stimuli to the left vagus nerve. He gets 30 seconds of stimuli every 5 minutes to hopefully help the seizures decrease, stop, or cut down on the severity of them. I started researching but I think it is still fairly new. We met with the rep from Cybertronics and ask TONS of questions. So after that we felt like it was what we needed to try for Dawson.
Well they did the surgery last Tuesday and they turned the generator on today. I'm not going to lie, I was scared to death and excited all at the same time for them to turn it on. It basically has to be titrated to the right setting for control of his seizures. I have been praying since we decided to do it that God would stop the seizures. Whether he healed him of it or He used the VNS to stop them. I knew it was all in his plan because of the peace that we had. I'm not going to lie, I was nervous for the surgery but not about the surgery. This was his 9th surgery but they have all been nerve racking. (however I don't think that is a totally abnormal feeling when your child is going into surgery) So back to the activation of the VNS. Early this morning Dawson had 4 seizures. They turned on the VNS at 10:30 am and he didn't have one seizure until tonight at about 10:30 pm and he was also very alert all day. Amazing! Keep in mind, he has been having anywhere from 6 to 20 a day. I am not getting my hopes up yet because this is just a very low setting and it may take us time to get to the right dose but I know that he is at least responding to the magnet swipe. (this is what gives and extra dose to stop the seizure)
I will keep everyone updated! I am just praying that Day 2 goes as good as Day 1.
On a different note, DJ had a great day today. He got to go play golf with Daddy in a tournament that benefits the Woodruff Football team.
GOD IS FAITHFUL and we can trust HIM!!