I needed some time after our appointment yesterday to process what happened, emotionally breakdown, and start to take the steps for what is next.
Our appointment at Cincinnati Children's Hospital was the complete opposite of what I was hoping for and expecting. After we were checked in we met with the Fellow to our doctor. We spent a great deal of time with this man going over Phoebe's whole history and discussing the results I had faxed over at the beginning of the month. He went down a list of what our appointment would entail, tests we would need to repeat, images we would need to get and people we would need to talk to. He asked how long we were in town for and if it was possible for us to stay longer if needed. By the end of our discussion he told me that beyond a shadow of a doubt what Phoebe has is ALPS. He also told me that the doctor he was going to bring in was an world expert on ALPS and THE person we should see.
The doctor walked in and he was a pompous, arrogant man with a God complex. He spent 10 minutes with us. In those 10 short minutes he told me that he does not trust any lab other than his own therefore none of results matter to him. (this includes the apoptosis test that Cincinnati did back in June) So it's not just that we are repeating tests to check levels and see any changes, he won't acknowledge any results we have gotten.
He said that his patients with ALPS have growths that are much larger than Phoebe's (can be grapefruit size and bigger) and can be seen from across a room, that the growths in patients don't cause them any pain, and that the growths don't need to be surgically removed for any reason.
He then told me that there is a doctor at CHOP who specializes in ALPS, and he thinks that that doctor would be our best option for all of our follow ups since it is closer to our home. Also because they work together and help each other out on cases.
I sat there speechless, trying to process everything this man was saying. Was he saying she doesn't have ALPS? If he was, why was he sending us to an ALPS specialist in PA? As I was going over what he said in my head, he did the quickest exam I have ever seen on Phoebe. He checked her neck, armpits, throat and ears. That's it!
After his exam he said he is starting from scratch with Phoebe since he can control his results in his lab, therefore he will be the one to "diagnose" what Phoebe has. He is labeling her as an "unruly immune system" and is using tests that he designed for ALPS that are still experimental, not available to everyone and will be the right tests to tell us our answers. (Even though we already have them)
At that point I sat there in disgust at his dismissal for everything Phoebe has gone through and all her doctors have done. Even the Fellow looked repulsed by what this man was saying. As quickly as this doctor came into the room, he was gone. Our case manager came in and I was in tears. Why did I come all this way? Why did we lay out this plan of tests, doctors and ultrasounds for this one man with an ego too big for that hospital to dismiss it all as crap?
She apologized for the way the doctor had acted, gave me the number for patient relations and told me she is not surprised to hear that's how he acted. Turns out, he is like this all the time. Even with the staff. She also told me she is forwarding Phoebe's results on to all the other doctors who study ALPS at that hospital, as well as reaching out to anyone she can to help us find a doctor for Phoebe.
Every article my doctors have given me to learn about ALPS was written by this man. Everything I know about this disease I learned from him. Most importantly - out of the 18 symptoms of ALPS, Phoebe has most of them.
So this man was either not interested in Phoebe's case because she does not have the larger growths distorting her body or he is looking for his next great article about how his special tests that he created helped diagnosis a sick 3 year old. (I googled him, and he has not written a new article about new findings in 2 years)
All I can hope at this point is that the doctor at CHOP in Philadelphia has more compassion and is more professional.