Tuesday, September 2, 2008

Long Day

Today was our appointment at Vanderbilt Pediatric Neurology. Let me start out by saying how excited I was to be going to Vanderbilt Children's Hospital - I have heard such wonderful things. He was to have an EEG at 815am, and a meeting with a neurologist at 10am to discuss the blankout stares (which both I and the therapists were worried about absence seizures).
I'm already mad at Vanderbilt. They screwed up, and last Monday sent us home, telling us our appointment was Friday and we missed it. As it turns out, they had scheduled JT 2 appointments with 2 individual ID numbers, and he had one both days... So we were there for our appointment, and they sent us home. After complaining to all the right people, they got us in a week and a day after our original appointment (I kid you not when I say that the first lady I talked to said I'd 'just have to wait' until the appointment they had gone ahead and scheduled last Monday - OCTOBER 3.).
The EEG was awful. Nurse was great, tech was great... But 90 minutes of electrodes sticking out of JT's head, with gauze wrapped around his head/chin like a mummy, plus a sticky heart rate monitor... Was NOT fun. It wouldn't have been fun for any almost-3 year old... Awful. He screamed, I tried to console, he would get distracted, the cycle would repeat.
When it's finally done, they tell us to go to the computer at reception and check in for our next appointment. I did.
After watching the very busy waiting room clear, not once, but twice! - I asked the lady at the desk if we were doing something wrong. 'Oh, you didn't check out of your EEG. Here, I'll do it for you.' I am a computer programmer, so immediately I'm like, how assanine. How can you check into another appointment and it not check you out of the first one?! You can't be in 2 places at once, so it should automatically do that. Besides that, I had done EXACTLY what the people had told me. Ugh.
After ANOTHER 30 minutes (I stood right by the desk as JT screamed, not that the lady cared, eff her), me making her call and check what the heck was going .. fifteen minutes... We go back into the appointment rooms. Our second appointment was supposed to be at 1015, it was now past 1045am. Anyone who knows me knows how much I hate how doctors treat people like their time is more important than mine. If I'm 15 minutes late, I have to reschedule. If the doctor is 15 minutes late, who cares? ME.
At 11, in comes the doctor. Old man, looks grandpa like. He says 'Did you have an EEG done this morning?' Me 'Yes.' (Steam is probably starting to come out of my ears now... Not happy). Him 'I'm sorry to keep you waiting, I haven't seen those results yet. Let me go look at them.'
Ten minutes later. Doctor comes in.
'Tell me about JT.'
I hate these questions. If they're so damn interested, they could invest some time and read the effing chart, or ask me to fill out paperwork. Not one person has asked me to tell them about JT's blank stares so they can write it down.
'Okay. JT has autism.'
'Who diagnosed him?'
This, my friends, is how doctors always react to this statement. Like parents would make something like this up. Stupid doctors.
'Arkansas Children's Hospital... But, uh, it's REALLY obvious. That was just the formal diagnosis.'
'EEG was normal. Why did you get it done again?' (At this point, I am wondering if he is actually listening to what I am saying, or if I could start practicing my french and he would continue having his one sided conversation.)
So, I explain how my therapists and I have witnessed these strange staring episodes, different from the typical autistic kid staring (which is different than NT kid staring, in case you're wondering). Ugh.
'Well, everyone stares you know.'
Duh.
'His EEG was perfect (yes, second time he's said it!). We have no way to know if he's actually having absence seizures since we didn't catch one. But we don't want to medicate something we didn't see.'
'I agree. But is there something I should be watching for with these that would indicate they ARE seizures? Any warning signs I should be...'
(He cuts me off) 'Does he even know you're here? Does he interact with you at all?'
JT, by the way, is hiding under an exam table. He is actually playing peekaboo with Audrey, but the idiot wouldn't know that because he's too busy talking to himself. Asshat.
'Yes, he does. He is actually much better than he was a year ago. He's doing very well.'
The doctor looks at me like he feels sorry for me (there's no mistaking pity in someone's face) and says 'I'm sure he does.' Like I'm a delusional woman who imagines her son is perfect and NT (neurotypical). 'Here's my card if you notice anything else.'
And he walks out, after spending a total of 3 minutes with us. He based an opinion of my son's interaction with others based on a situation where my son was in new surroundings, he had been traumatized all morning by a medical procedure, and the guy had never laid eyes on my son before. AND he had just doubted the freaking diagnosis in the first place!!!!
In this 3 minutes, he has managed to give me no useful information about my son's condition. He first questioned my son's diagnosis, then acted like he was the most severely affected child he has ever seen.
I still don't understand the whole doctors thinking parents make up an autism diagnosis. No parent would wish autism on their worst enemy. It is a freaking disability... Ugh.
So, I am severely disappointed in Vanderbilt. Basically, I am happy his EEG was good, but even in the doctor's words, it proves nothing.
This just adds to my depressing week. I have been so excited about my son's progress... But I began looking at his goals and his levels from five months ago. Language and communication wise, nothing has changed. A therapist told me last week she is afraid of my son. He has now injured two therapists (one over a month ago, one last week). Her injury was because of a blow to the head by a thrown sippy cup. She explained she wasn't afraid of his intent... He wasn't trying to hurt her. But he is impossible to predict (like the plate that bruised my face up about a month ago... You just don't see it coming), and I do agree. Plus I adore the therapist, she was just sharing her input on JT, trying to help (and asking for help herself). It was not meant to be hurtful in any way.
But, how do you react when someone tells you they're afraid of your son?
I am just in a funk. I cried all the way home from Vanderbilt (intermittently cursing at the doctor, how dare he feel sorry for me... I do NOT want his pity). I wish I could fix people's ignorance so they could see my son for who he is and what he offers.
Now it's time to take a deep breath and get on with life. Suck it up, momma. Can't let stupid people (even those with medical degrees) get you down.
My kiddos were both awesome today, especially considering the circumstances. Here are some pics of my little man all hooked up:

1 comment:

  1. That does sound awful!... poor JT... and poor mommy...I'm so sorry Kate. Sometimes life just sucks (and today was a sucky day). Hopefully tomorrow will be better. Not that it compares to what you are going through, but Hayden is getting at least 3 teeth right now and is miserable (which makes me somewhat miserable). He is extremely crabby and irritable. Poor Hayden... and again poor JT. He is definitely a trooper though!... Go JT!!!

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