He told me that a big part of the discussion was that the CHOP specialist wanted one specific medication to be just a "bridge" medication until we get her definitive genetic results. That once we got those results, she would most likely want to change the medication.
He wants to wait for the genetic results to start this medication or another one like it. And after talking with her other doctors they agree. He does not want to start this med, see it help (even a little) and then stop it in 3-4 months and then put her on something else, or add another medication to it.
He did say something we could try is naproxen. He feels that that is the safest "bridge" medication to give her. He called in the prescription as soon as we hung up. The pharmacist called a little while later to tell me the medication had to be ordered and it would be ready after 2 pm on Friday.
Now don't get too excited....this does not have a happy ending just yet.
Friday afternoon I got a phone call from the pharmacist saying that there is an indefinite back order on this medication so they cannot fill it, no one can. They said they were going to call the immunologist to see if there was another route he wanted to try.
A little while later the immunologists office called to tell me the same thing about the back order, and that our "bridge" medication will continue to be what it has been for the past two years....over the counter ibuprofen or aleve.
I have faith in our doctors, and I completely trust the team we have in place, and I know they all have nothing but Phoebe's best interest at heart. But each day this goes on with no answers, no treatments, and seeing her go through what she does it is another piece of my heart that breaks that I cannot help my baby or make this better for her.