Wanna See An Angry Gia? :: No One Wants ThatFriday, September 2, 2016
You know, being a parent is the scariest thing in the world. We are always--CONSTANTLY--afraid that we are making mistakes and screwing our children up. It's like we're carrying a bundle of lit dynamite in each hand. Don't trip. Don't fall. Don't breathe. If you do, it's going to all blow up in your face.
That's how the last 24 hours have left me feeling.
At almost exactly this time yesterday, I was in a tiny room with Roger, Lucy and our neurologist resident doctor. My heart was racing. I felt like the floor had turned to water. My eyes filled with tears and the words wouldn't get out of my mouth coherently. So, I did the only thing I could do to survive. I stood up and walked out, leaving Roger to handle it all on his own. Fight or flight? I chose to let Roger fight.
Cowardly, I know.
But as far as I can tell, he was the level headed parent at the time, even if he was looking a little red with anger...
I know that I am not a doctor. I am not a specialist of any sort. But I cannot understand the process we have gone through to find answers and treatment for Lucy. Today, it doesn't seem that those that have the power to help us are very interested in helping us. The first day they met us, without having done any tests on their own, they recommended starting Lucy on anti-convulsion medications and then we could do a 24 hr EEG to determine if she was at risk for seizures.
Roger and I blinked. "Why would we choose horrendous drugs right away? And wouldn't that disrupt the results of the video EEG?"
I can't honestly recall what their response was, but in my mind, they shrugged.
Clearly, Roger and I said we didn't want to do anything until after testing.
Fast forward to testing. When we were being let go from the hospital, they stressed to us multiple times that it would take five days before we heard anything as far as results. Yet, the very next day, I got an urgent call that the specialist (the one that reads these tests) had been alarmed enough by the first look at Lucy's test that he wanted her started on medication right away and be provided with an emergency pack for life saving measures should she fall into a seizure that lasted more than five minutes. "Your daughter is at high risk for focal seizures."
Okay. Let's get on top of this. So we spent hundreds of dollars on evil medication. It seriously almost made her want to throw herself off a building. Lucy was in so much pain.
For weeks, we tried different medications. "Let us know if this one causes her to hear voices." It did. "Let us know if this makes the seizures worse." It did. "Let us know if this one causes rage." IT DID.
So we end up in our appointment yesterday, having still never been told the final report from her test. The doctor begins to explain to us how Lucy's past episodes were seizures and how her seizures work. However, she was unsatisfied to hear that Lucy has been physically ill, moody, sometimes raging (not since we got her off the med that caused that), and heard voices on the first medication. All of a sudden, she is backpedaling. "Maybe this isn't seizure related?" she says...
I'm starting to get upset now. I researched the snot out of all those medications and read all about seizure auras and meltdowns and how mood can be affected in epilepsy patients and is often misdiagnosed or not diagnosed at all because people assume it is mental illness. I am preparing myself for her to start broaching the subject, praying to God that she doesn't. If she does, we're going to be written off and forgotten about and not get the help Lucy needs.
The specialist seems to get really frustrated and asks us who else we have seen about Lucy's issues. What other doctors? Roger and I are so confused. We try to explain that we were only referred to them, who else would we be seeing? We weren't TOLD to speak to or see anyone else.
And then she begins to speak about seeing a psychiatrist. I'm okay with that. I read enough on the Epilepsy Foundation page to know that this is not surprising, but she starts saying, "I don't think this is seizures."
"What? What about the test results that were so alarming you called us the next day? YOU WERE JUST EXPLAINING HOW HER SEIZURES WORK!!! HOW, WITHIN FIVE MINUTES, HAVE YOU THROWN HER TEST RESULTS OUT?!?!?!?!"
"It's possible we could get those results from anyone off the street," she says.
And the dynamite explodes in my hands. HOW COULD YOU GET ALARMING RESULTS FROM TWO EEG'S FROM SOMEONE OFF THE STREET?!?!?! And if you can get results like that from the average joe, then why isn't everyone on anti-seizure medication. You're a quack. You are crazy. You're going to cause me to lose it right here in this office.
I didn't say any of that. None of it.
I realize I'm not even talking to the real doctor, but the resident. I remember how when I called to make the appointment the receptionist (KID YOU NOT) lost her mind on me and started freaking out about how there were patients coming in straight off the street and they couldn't keep up with this and WHY WAS MY DOCTOR referring us to them? She quickly apologized, realizing how unprofessional she was behaving and how patient's mother's did need to know how unorganized and overbooked they were.
And I am mad.
So mad that I don't trust myself.
So mad that I am angry at myself for being so mad.
So mad that the tears are falling fast and I can hardly see the door to get out.
We left that appointment told to keep taking the seizure medication because the newest one was obviously working (how is it working on a condition that doesn't exist, is beyond me). We were given a packet of psychiatric specialist ranging from drug addictions, suicide prevention, sexual abuse survivors and the like...and told to return in January to see how she was doing.
Oh, and they ran a test on her heart to see if her "fainting" was a result of a heart condition. Funny how at the start of the appointment they were explaining to me how her drop seizures worked and by the end, Lucy was fainting and needed psychiatric treatment. All of these decided in 15 minutes and the medical testing, the real science, completely discarded.
Did I forget to mention that the doctor asked Roger and I to walk her back through all the drugs she had prescribed and all of her symptoms and episodes? She needed US to remind her of all the testing done and how we had ended up at Riley to begin with. Roger actually stopped and asked her why none of this was in the chart in front of her. She didn't answer.
So, what to do now?
We are going to get all of Lucy's reports and test results and get a referral to Peyton Manning Children's Hospital. I know that the medication is helping Lucy, but we don't know what is truly wrong. We were told she had epilepsy and then we were told to seek help for mental health. This isn't proper medical care and is unacceptable.
So yes. I am mad. Was mad. Still mad. And going to fight like a woman ought to for her babies.
Don't mess with me.