Right now we’re at NIH going through clinics. We were here about 3 weeks ago for Ray’s regular check up for the IGF1 protocol. When we were here last time, they noted from his long term labs that both his platelets and lymphocytes have been declining over the last year and his liver enzymes have been increasing. So, they decided it would be a good idea to try and figure out why before things went too much further.

They also noted that despite being on the right dose of IGF1 for his weight, his levels were barely above his baseline level. Dr. Malech didn’t want to increase the dose since they don’t know why his blood counts are off and decided to stop the IGF1 trial for now. 2 weeks ago I brought blood back up here to have them do PCR analysis to look for EBV, CMV, HEP B and C. Those tests all came back as having no evidence of any of those viruses. YEA! Today they did a CT to look at the liver and spleen to rule out any other problems there. I haven’t heard the results of that yet. I still think a lot of Ray’s problems stem from poor nutrition. Despite being g-tube fed and given a diet complete in everything, he runs very low in certain areas. Fat soluable vitamins, he runs very low. In fact his vitamin D was considered critically low. He also runs low in calcium, protein and iron. Much of last year, his GI system was acting up and his GI had upped the frequency of his flagyl dose. He did this because I noticed that as we rotated his meds to control bacterial overgrowth that he was better during the weeks he was on flagyl. I’m not sure that was enough though. Recently, Ray was on biaxin. A drug typically used for respiratory infections because he’d had a cough he couldn’t shake. Since coming off the biaxin, his Gi tract seems better than it’s been in a while. One of the nurses commented that biaxin can also kill h-pylori which often attacks the GI tract. I guess only time will tell if this makes a difference to his blood work. Some of the labs drawn this morning are already back, but not all. I know the vitamin D level will take longer.

So, that’s where we are today and what we’re doing.