Day Five of Not So Great

Twenty-four hours, two Advice RN calls, and three phone MD consults later ...

James is still in pain, moaning, and yammying. He is drinking water, walking, and proving he's hydrated in the bathroom. He won't eat, however.

So I am trying to keep him hydrated and on the anti-nausea meds (we run out tomorrow).

Besides being upset that my son has been in so much pain for four days, I am getting frustrated with the tag team of medical records. His new pediatrician called today to check-in, which I appreciate. She then questioned his diagnosis of Autism, quizzing me as to who did the diagnosis and who was tracking his progress?

What. in. the. frickin'. who?

It's almost like being asked to provide a certificate that proves I'm the mom, seven years after the fact.

On the one hand, I am trying to see this as a doctor who is doing her homework before seeing a challenging patient the next day, as well as an opportunity to educate a whole lot of medical personnel about Autism, and working with patients and families on the spectrum. I do a lot of counting on this hand.

On the other hand, I want to yell: "What, just because one of the HMO docs didn't diagnose him as Autistic I will constantly have to remind you of the fact that I asked to get a second opinion and a whole panel of professionals (twice, if you count the MIND Institute) told me: 'yes, your son is Autistic and has some severe developmental delays' ?!?!"

I am sure that's not how it was meant but boy howdy, that's how it sounded.

P.S.: The tracking his progress is funny bureaucratic nightmare kind of way, because they have denied  requests for services that would bring them onboard James' team and allow them to both facilitate and track his progress.

Better! And Need to Know?

After three days of yamminess and really not feeling well, James is better!

He had his first day of preschool school and SHAPE this week. I am so happy to see him back to bouncy and sunny. It was a bit hard, trying to explain to the advice nurse and doctor why I couldn't ask James where it hurt. I never know what lights up in peoples' heads once I mention that he's on the autistic spectrum.

I had to ask the doctor to put his diagnosis in his medical records, as the advice nurse said it never showed up in what she had access to. That felt weird. I usually say that James has language delays and leave it at that. Is it really that necessary to have medical practitioners know that James is on the autistic spectrum? Has anyone else found it to actually be helpful?