Unfortunately, this neurologist had much of the same to say. She feels his nausea and vomiting could be seizures, but that it also could be what is called cyclical vomiting. The problem I have with that diagnosis is that cyclical vomiting is predictable because, just like it's name, it comes in a cycle like clock work. For example a person with the diagnosis knows that every six weeks to the day they will wake up vomiting and it will last until they are dehydrated. Preston's nausea spells are completely random. It is my experience, though, that neurologists don't listen. Or they listen but they don't hear. Often they come in the room with their opinion already formed having read the charts and they have a sometimes very direct way of making you feel like you are an over-concerned mother. I am a very non-confrontational person and have respect for those who are more educated than I, however I am learning that to be your child's advocate you have to speak up and insist that people (including doctors) listen. This is not easy for me.
The neurologist we saw today wants to try a new medication for Preston, Depakote. She said it is a medication used to treat both seizures and cyclical vomiting. Her hope is that it will not only work for the seizures, but make it possible to take Preston off of his other two seizure medications so that he would only be on one. I have more investigating to do before I will fill the prescription because even though the expected results sound nice, the medication has side effects that make me nervous. Not to mention the fact that she said, "when you get over to the gastroenterologist she will tell you that Depakote is one of two medicines they use for cyclical vomiting." At our next appointment, when I told the GI doctor what the Neurologist said she replied, "No, we do not use Depakote for that." Furthermore, she mentioned several medications they use and the other medication that the neurologist said we could try was not one of them either! Ugh! Do you see what I'm dealing with here? And this is Riley! Supposedly the best pediatric hospital in the area!
I really like the GI doctor. I felt like she listened to me and asked a lot of questions. She agreed with me after looking at Preston's lab work and examining him that he did not have cyclical vomiting or other GI problems. She understands, though, that in order to get any further with the neurologists we have to play their game so to speak and eliminate it as an option through complete testing. So she is calling for a few tests to be run. And unlike the insurance games most doctors like to play, she is fine with us doing the testing at our local hospital and just having the results sent to her.
So that is our next step. More testing. Bless Preston's heart. I'm so glad he is so good about all of this. As long as it's not blood work. He said to the neurologist today, "If you people keep taking blood from me I'm going to turn into a piece of fabric. I'll be a human bear rug. Just skin." He always makes me laugh. Unfortunately there is more blood-work in the forecast if we start the Depakote so that his liver enzymes can be monitored for safety.
Please continue to pray that Preston keeps his good natured attitude as we go through this testing. He said tonight that he is "tired of vomiting and tired of having his blood ripped out of him." Pray that we continue to move towards a better diagnosis. The progress seems so slow but I know God's timing is perfect so I will trust Him. And finally I would ask for prayer that I know how to be a firm advocate for Preston but do so gracefully. Because once this process of elimination with stomach issues is over I am done playing their games and I am going to be militant about getting answers! I'm 'bout to get all Coach Hines up in here people! :)
I know - I needed the laugh though. I would never. Or would I? Ah hem.... Let's just keep praying :)
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