Fighting for our sanity

I spend a lot of time monitoring and evaluating and recording the way Javi's medication affects him. We spent seven months on Concerta, which worked wonders for the first six months or so. And then Javi's behavior started sliding back into frustration territory, so we upped his dosage from 18 mgs to 27 mgs to 36 mgs (yes, we liked to move in 9 mg increments).

But those increments didn't result in controlled impulses, heightened attention, and emotional understanding. Instead, we had intense meltdowns that included lots of crying and storming off and my child suggesting that he's stupid, ugly, and inherently bad. Obviously, that wasn't going to work.

So we went back to the doctor to figure out a new plan. We have always been careful not to overmedicate him or keep him on a medication that he doesn't need. So we wondered, was his behavior a sign that the medication's not working or was it a sign that he needed a higher dose? I was relieved when his doctor didn't advocate pumping him up another 9 mgs. According to her, those meltdowns and other behaviors were a sign that Concerta was the wrong medicine.

We then moved onto 20 mgs of Vyvanse. That was toward the end of the school year, and his behavior both at home and school improved tremendously. He would sit at his desk and finish his classwork rather than pace the room. He would come home with great reports rather than a laundry list of poor decisions (including once, "Javi tried to climb the bathroom wall today" -- who does that?). And we knew Vyvanse was for us.

We are now at the one-year-on-medication mark and are extremely happy with Vyvanse. Yes, we fight to get Javi to eat and we struggle when the medication wears off, but those are issues we can deal with. More importantly, those are issues he can deal with without considering himself the bad egg.

So imagine my extreme frustration yesterday when the doctor's office tells me that they will not refill our prescription (which runs out tomorrow) until Javi comes in for a physical. Yes, I know they want to make sure his body is responding correctly, that his heart isn't strained, that his blood pressure isn't too high, and that he isn't experiencing elevated anxiety (which I am concerned about).

I get it. But what they seemed to forget is that Javi's medication is what keeps us and him sane. He doesn't like himself when he's out of control and can't relax into an activity. He doesn't like the pacing and the twitching and the inability to not do things that he knows are wrong. While the pediatrician's policy may be to withhold a prescription pending a physical and test results, it's not a policy that works for our family.

So I raised hell. Yep. I argued on the phone with the frontline staff and eventually the doctor. I tried to reason with them. A) I call every month for a refill. If I don't show up with my son for his physical (which is in a week), then don't give me the next refill. B) If you weren't going to give us enough medicine to make it to his physical, then YOU should've scheduled the physical when we were in for a follow up visit last month. C) YOU KNOW WE'RE COMING BACK! So give us the damn prescription already!

That worked for a half-prescription. The office was willing to give us a prescription for nine days and not a pill more. I told them I'd be by to pick it up. So I call the pharmacy and guess what? THE COPAY IS THE SAME. So I'm supposed to pay $30 today and $30 again next Monday. Seriously? With the office visit copay, that's $90 in less than two weeks. Did I miss the money tree growing out back?

So I decided to take matters into my own hands and showed up at the doctor's office with both guns blazing. I used the same line of reasoning, but I did it passionately and in person. Finally, Javi's doctor came out to discuss it with me. I appealed to her basic sense of humanity ... and played a bit on her emotions. I asked her if it were her son whose brain sends him running in circles all day, would she just suck it up? If she had to pay two times the amount for one month's worth of medication, would she just suck it up?

I don't know if she saw the desperation in my face or heard the cracking in my voice, but she finally relented. So now we have a full month's prescription and we're still on schedule for our physical. Everybody wins, right? Right.

But I just can't help thinking about the moms who don't fight back. Maybe I have an inflated sense of entitlement or maybe I don't get how many people abuse their prescriptions, but when it comes to my child's fragile little self, I'm not going to just suck it up. Would you?


  • Sharon G

    Good for you for sticking to your guns!!! I've had to do similar things with Hannah's heart meds. Don't even get me started on insurance "stuff". You're a great Mom...Javi is so lucky to have you!!! (Bella too!!!)

  • Ken and Meg

    You HAVE to fight. If you just sit back, nothing gets done, no one gets better and you find yourself feeling worthless. When Cooper's case manager held his annual "team" meeting with just us and her...not one other person on his team - which includes 4 therapists, I sent an email to the case manager and her supervisor spelling out the need to re-do his team meeting with the following people...spelled it out for the lady as if she hadn't already billed for the meeting once. But, I got my meeting with ALL the team members. If I had sat back and said nothing, then NOTHING would be happening. YOU GO GIRL.

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