List-Making for Saint Doctor

It's the end of Good Friday, and as I sit here reflecting on how much I want to write, feel the need to write, I retrace my steps from the last few days and take in a deep breath. 

I must give thanks right now for a fruitful meeting we had with Anna's primary care physician yesterday,  the doctor with the patience of a saint who sees us at a moments notice and who has become his own walking research center on Rett Syndrome since our Anna was diagnosed. I separated my list before our appointment, item by item, as your typical Type-A would, and hoped I wouldn't scare him with all I had written out. 

I read a fantastic book while in Florida, a mother's journey with autism, and did some research of my own on how to best combat Anna's symptoms, particularly the autistic ones we see when she isn't feeling well or is having extreme anxiety.

One bit of information that really struck me was how the amount of yeast in the body can affect certain behaviors in autistic children. Anna has been on an almost constant prescription of amoxicillin since December, when we have fought one ear infection after another and tubes in her ears were not a viable possibility because no doctor would put her under anesthesia after her recent respiratory illnesses. While amoxicillin fights off infection, it also wipes out the "good" bacteria we have in our bodies, which can lead to an overgrowth of yeast and other fungus. When I asked our doctor if he would test the amount of yeast in Anna's stool, he kindly told me he had never heard of that and only tested for yeast in the blood. Nevertheless, he went to his diagnostics database, saw that the stool test did exist, and ordered it. Once we see what her yeast levels are, she may go on a certain medication that will get rid of the yeast in her body, and see if this possibly helps with the autistic features that are presenting in her right now. After this conversation, and his patience in searching his database and ordering something he had never ordered before, our physician shot to number one in my (large) book of doctors. 

While he prepared me a bit with the Rett speech by explaining that this is a progressive syndrome and she will get worse, and we will see changes in her behavior often, I refrained from yelling "but we're not going to take this lying down now are we?!" Instead, I told him while I knew what he was saying, I'd rather not attribute this behavior to "oh, you know, it's just the Rett Syndrome progressing" and would like to see where this little yeast experiment led us. He agreed. And thus earned the title of Saint Doctor.

Another item on my list for SD was how I read that B12 shots have helped increase some speech patterns in autistic children. Something in the B12 stimulates something in the brain that is connected to communication (like all my medical "something" terminology?) and some kids, after a regime of B12, have experienced an explosion in their communication skills.

What did SD do? He ordered a B12 test to make sure Anna isn't deficient. He added folate to the list, "just to be sure," he said. I wanted to kiss him.

Moving down the list... I wanted her immunity tested. I am actually a little surprised no doctor has recommended this before considering the amount of hospitalizations, but let us not regress. He ordered that, too. 

He then cleaned out all the wax build-up in her ears, placed a call to her ENT who we see on Monday to let her know he'd like to schedule her for ear tubes as soon as her pulmonologist clears her for anesthesia, and also called one of the best cardiologists in New York with a 3-month wait list and secured us an appointment with him for one week from now. (Once girls are diagnosed with Rett, it's important for them to be followed by a cardiologist incase they encounter heart problems in the future. It's more precautionary for us right now.) 

It was a delightful meeting, and I left with such a happy feeling that SD and I were on the same team. All of us are learning this as we go, and two heads are better one. (Well, three, because Manny is definitely in on this, too. He just had to take Anna out into the hallway during our appointment because, unfortunately, she does not share the happy feelings with me when we see SD. Instead, she raises all hell and screams her little heart out to assure SD she is not his friend, however, we all know he is very much hers.)

I feel like my suitcase is almost packed for our redirected flight, and I'll be able to close it up by the time we head to Houston at the end of the month, where we'll meet our Rett Specialist for the first time, and I hope and pray it will be nothing short of the beginning of a beautiful friendship.