Today Diego had an appointment with his neurologist.
When we went to the neurologist this morning I expected that it would just be a quick check up and we would be out in fifteen minutes.
Not so much.
While the doctor was doing Diego’s Neuro exam she noticed a tremor in his hand while he was writing.
Children don’t have tremors, my adult patients with Parkinson’s have tremors!!
She asked me if I noticed it, and I said that I had noticed his writing looked like his hand was unsteady, but asked our OT and she attributed it to his fine motor issues.
She didn’t say anything in response to this.
Fantastic (insert sarcasm here).
Then the doctor had a “conversation” with Diego. She got one word answers and rarely anything more, and if she did get him to elaborate it was minimal.
After our discussion and her exam she said that she thinks that Diego isn’t doing better, but worse..
At this point I felt like I had been punched in the stomach
She is very concerned with Diego’s expressive language and is ordering another speech eval targeting the areas that she thinks he is deficient. In response to what she found with Diego’s neuro exam she has decided to order various metabolic tests and a Fragile X workup.
She also said that she thinks that Diego should have one on one speech therapy and see a psychologist that is more specialized in ASD’s.
Obviously not what I expected, at all.
In that moment I felt like all that Rickey and I have been doing for the past six months hasn’t really accomplished what we thought it did.
I really thought that we finally had a handle on this??
There is no algorithm for Asperger’s,it’s just us parents flying by the seat of our pants, crossing our fingers and hoping all of the interventions work.
Then to think that Diego might have Asperger’s and a metabolic or genetic disorder, that some random disorder may be causing “autism-like” behaviors, or that it is still Asperger’s and my brain is spinning for nothing is making crazier than I probably already am….
Am I really in denial and not noticing that he isn’t improving??
Is she mistaken??
Rickey and I left the appointment with a hundred more questions than we went with. I never even looked into Fragile X, because I thought only children that had cognitive issues were affected, upon research this isn’t the case.
I wont even go over the gigantic range of metabolic disorders and their accompanying issues.
So now we get to play the hurry up and wait game.
My f*cking favorite.
I am going to take Diego for his blood work Monday afternoon (fun times 😦 ), and am waiting for the authorization for the new speech eval.
Results for the blood take about three weeks, and the auth takes about two, there is no telling when we will actually get the Speech Eval appointment.
A few weeks after the tests are done, I will email her to get the results and wait, because she is nearly impossible to reach.
Have I mentioned that this sucks yet???
The psychologist that the doctor wants Diego to see isn’t covered by my insurance. I can barely afford what I am currently putting out in copays and unpaid time off of work, let alone afford to pay a high-priced but experienced psych every week.
So what the hell am I going to do?!?!
I feel so defeated today and my brain is all over the place with what “could” be going on with Diego and what I can’t do.
But I am going to have to get it together quickly.
I am meeting with the principal of the elementary school Diego is attending for kindergarten, tomorrow, and I have to write out an agenda so that I don’t forget anything.
After the school district battle, I thought I could breathe for a bit and then conquer something else.
I guess “something else” came a bit sooner than expected.