Today's visit with our local doctor left me wondering how are we moving forward? We know what the problems with her immune system are. We are addressing the problems with antibiotics and Hizentra, but we aren't looking for the cause. I have heard that it can take a long time to get to a diagnosis, but it feels like we aren't progressing toward anything.
Our specialists are disagreeing about whether or not she should have a flu shot. Cincinnati feels that she wouldn't make an antibody against the flu, so there is no point. Our local specialist feels that the worst thing that could happen is that she wouldn't produce an antibody against flu, but maybe she would develop a mild antibody, which is better than nothing. We go to Cincinnati on Wednesday, so we'll ask about it then.
We've been hearing about a new development from the manufacturer of Hizentra. In September they released a formula that would only need to be given every two weeks. They are really pushing this new dosage. I asked the doctor about it today. He said that until they could show that it would maintain a more consistent level he wasn't recommending it to his patients.
What I'm hoping for on Wednesday is that they will give her the flu shot if we suggest using it to test how well she makes an antibody. This would involve drawing blood before giving the shot, and again later to see if there is a change in antibody levels. I'm also hoping that they will check her helper t-cell level. The plan was to watch and see if her t-cell level went down, but they haven't checked it since August. I'm going to request that they do more of the genetic testing before January, while our insurance is paying 100%.