A Trip to Vanderbilt

Over the past week or so Z has had minimal pain he occasionally has had to use his TENS unit I would say maybe twice in a week or so. Today when I went to pick him up for Physical Therapy he was in some pretty bad pain and wanted the TENS unit put on I picked Z up from school around 2:45 and his PT starts at 3:30. Once we got to PT his therapist noticed that he was looking tired, showed concern and then asked him if his eyes were hurting him and he said that his left eye was bothering him. She went to test his neurological function by having him track her finger, she noticed that one eye wasn’t tracking properly and went to contact Dr. Jordan to see if it was something we should be concerned about. While we were waiting Z started complaining of his stomach and his head hurting. His therapist then checked for fever, there was none. She was able to get a hold of the answering service for Dr. Jordan, they said they would call back at my number, as we were leaving Z experienced a sharp pain down the front of his left leg (from his knee to his foot) we went back to see what his therapist thought and she felt that with this disorder being one that is very rare and that Z is the only child known with it that it would be wise to go on to the emergency room for observation, just to be sure everything is okay. So away we went to Vanderbilt Children’s hospital while in route Zachary's muscles started to tighten up in his arms and legs 

he was able to speak and let us know that he was in some pretty intense pain. This lasted about 10 minutes including the time it took for his hands and feet to relax and go back to normal, we arrived at about 7:00 checked in and were taken back to a room around 8:00. Zachary seemed to be relaxing and only complained about his eye, head and stomach. Then a pediatrician came in and I explained to her all that had occurred through the day, then she did some basic exams and went to consult with the attending. She came back and informed us that they wanted a neurologist to come in and check Z, then another doctor came in and did another neurological exam, she says Z seems to be tracking just fine. We continued to wait for the neurologist. At about 9:30 one of Dr. Jordan’s colleagues came in to check on Z he also checked Z’s neurological functions and said that everything looked fine and said that if there were cause he would push for the angiogram tonight but Z looks good. He also said that if Z was having trouble tracking he would still be having some trouble with it. Something like that doesn’t just go away it usually takes weeks or even months to return to normal. I drove our son to Vanderbilt because I was scared, my biggest fears are that his sight or hearing will be jeopardized because of this disorder. I will do everything in my power to be sure Z gets the proper care that he needs. I’m aware that this disorder is very rare and that Zachary is the literature being written, and there's no comfort in this at all.