Met new Dr....August 2, 2008

Met New Dr. at UTMB... Well, yesterday it happened. Right on schedule, Brock got his 3-week fever again. Of course, as I had thought, it didn't come on until about 3:45, so I knew it would be difficult to get to the doctor's office in Galveston to see her before 5:00. I knew it would happen at a time that would be inconvienient! However, the doctor was amazing and agreed to stay after the clinic closed and see us. We met her there at 5:30 and watched as Brock's fever continued to climb. They had told us not to give him tylenol or anything for the fever before coming. I was so nervous driving there because I didn't want him to have a seizure in the car on the way there (which has happened before). So, we met with her for about an hour and a half. She asked me TONS of questions, examined Brock and asked more questions. She has some ideas as to what might be the problem. Unfortunately she still had uncertainties too. One diagnosis that is being looked into is "Periodic Fever, Aphthous stomatitis, Pharyngitis, and Adenitis". It is a rare disorder and there is no cure. They can do steroid cycles to try and control it, but thats about it. He does not display all the main symptoms for this, but the distinct pattern in his fever is key here. The other main diagnosis that is being looked at is still cyclic neutropenia. This one is something that can be treated and controlled better. There are a few other things they are looking into, but I am not sure what they are. We did a lot of blood work (again) yesterday and the doctor is hoping she will see what she is looking for in that. The key in this round of blood work will be that it was drawn during the onset of his fever instead of at the end of the fever cycle. The doctor is also thinking of admitting Brock to UTMB when the next fever cycle is about to start. She would like to have him there for observation and have him on the EEG monitors for his seizures. I think this would be a good idea so they can get an accurate picture of what we are dealing with every 3 weeks. Also, she wants his tonsils removed! That was surprising to me....he has never had a problem with them or had strep or anything. He had his adenoids removed when he was 2. She just thought it might be a good idea....they are always swollen when he gets fever, but not infected. For now, we are still in the same position we have been in. This time though, we have someone actually looking into things and giving us good feedback. Right now Brock is sleeping...he had fever all night and will probably have it through the weekend or even Monday. He has not had a seizure yet which is great! I leave tomorrow for Washington, D.C., so I am a little nervous about that with him still having fever. I feel better knowing that we are in good hands and that eventually something will turn up and we'll get an answer. Blood results should be in on Monday or Tuesday. I will update as soon as I know anything! Thought this was interesting....yesterday on the way to the doctor I saw a sign at a church that read "God's delay in answering prayers increases faith." Wow! I thought that is so true....we really needed that!