Thursday morning began with a trip to my son’s pediatrician, Dr. B. Dr. B is a fine pediatrician for my son’s asthma, for his colds or ear infections but I went to see her for his autism today. She doesn’t know much about autism. She freely admits this. So, it was a really weird appointment.
The whole point of the visit was to find out what her opinions are about the risks of my son participating in hyperbaric oxygen treatment or transcranial magnetic stimulation which I have been blogging about here and here. In order to get to the main questions however, I had to explain all about his current speech, occupational and behavioral therapies. I had to tell her how often he goes, where, with whom and I had to explain what ABA does. Yes, you heard that right. I was explaining ABA to her.
Have I mentioned that she doesn’t know much about autism?
I knew I was going to have to explain how much time he spends at various therapies he was receiving but I did not think I would have to explain what the therapies did. Have you ever felt like you are the only one saying anything and the other person doesn’t really get it? It was one of those times. I felt I spoke so much that I was sick of my own voice. Dr. B seemed a bit uncomfortable with the discussion outside her realm of expertise. Eventually, she gave my son a standard examination – an area in which she was confident, right before we left.
When we finally got to the main event, I asked about her familiarity with hyperbaric oxygen treatment (HBOT). I asked her whether the risks of HBOT were relatively high given my son’s age, size and condition. Her response was that she had absolutely no concerns about his physical health or well being in connection with participation in HBOT. As a scientist, she said, the lack of evidence in support of the theory, was a concern that I might be wasting money because it might not help him. She said she understood that, because there was a possibility that HBOT could lead to an improvement in my son’s condition, I wanted to pursue it. She said there was nothing wrong with that. She says she does not discourage approaches to safe, but unproven alternatives.
Because of her lack of expertise in autism, I asked about a developmental pediatrician who was an expert in autism. She says that type of pediatrician is not familiar to her in California. Instead, she agreed to refer me to one of the best pediatric neurologists in our region, a Dr. Michael Chez. Normally, I would not name names here. But this guy is a big deal in these parts and his name ties in below. I heard great things about this neurologist today and I am excited to be embarking on this new phase for the little guy.
I must say that it was a bit disconcerting tonight when I checked online for him and found that he is a part of my medical group. More disconcerting? My medical group has an entire Neuroscience Institute within which is an Autism Medical Treatment Center of which he is the head -to which I have never previously been referred.
Really?! I had to schedule my own damn appointment with my “clueless” pediatrician, explain that I’ve been researching all these treatments as a mom from my home and my computer to help my son and she’s known all along that there is an effing Autism Medical Treatment Center that she nor anyone else has bothered to share with me for over a year? Just a little perturbed about this. At the same time as I’m excited to finally speak with someone who will give me the best information I can get within my insured medical plan. Here’s a bit of shameless promotion by my medical group about the doctor to whom I was referred which was posted on their website:
Maybe I should blame myself for not researching my own medical plan. I would not think that a mom of a fairly newly diagnosed child would have to do research within her own medical plan for this type of specialty. Silly me, I thought my medical providers within my own medical group or even the numerous people who diagnosed and/or have treated my child to date, might have shared this information with me. Not until yesterday.
Since they did not, I thought I’d share a little something with all of you.
The first place you might want to look for specialists in autism is within your own medical plan. Don’t wait for your pediatrician to give you the appropriate referrals or assume no referrals exist if they don’t give them to you. Ask. Google. Research. The help you are looking for may be in your own backyard.
Now that I know about this whole new resource, I am holding off on alternative treatments. Instead, we will be going to this center for appropriate, science based testing and treatment. I’m not saying we won’t still do the HBOT or TMS, but if I do, I will talk to the experts first. I think this guy will know what I’m talking about. And from now on, before jumping into alternatives, I’m going to look before I leap…