Category Archives: Medication

Change is in the Air

I wonder if Mikey is so drawn to October because there is so much change around this month–and he hates change, but that doesn’t mean it’s not interesting. The weather changes so much in Pittsburgh. On Tuesday, it was 84 degrees and sunny. On Wednesday, it was 64 and windy.

The food changes so much in October–we are suddenly presented with pumpkin everything. Last year this made him gag, but this year he’s feeling adventurous and likes pumpkin waffles (but only the ones from Aldi). And of course, there’s candy all over the damn place. Cody took our boys to the builders’ workshop at Home Depot and they came home with THREE BAGS of candy. Three bags!

The world around us changes visibly here, too. The trees flame red and orange almost overnight. I think they peaked as we drove home from my sister’s wedding in late September…but then in the same month, these same leaves fall down and scatter the ground and everything becomes slick and wet and unfamiliar. Or else crunchy and crisp and also different.

For a kid who thrives on routine, October must seem a confusing mess for the senses. This year, his body is responding in a way that is familiar and frightening to me.

His oral/facial sensory needs have increased dramatically. His fingers are bloody from biting the nails down well below the tops of his fingers. A school report from the psychologist reveals that he is just constantly, constantly touching his face and also pressing his hands and feet against things. His poor body just can’t get enough stimulation it seems.

We scheduled an interim appointment with his psychiatrist to discuss how this might be related to his medication. The medication is still functioning in terms of controlling his impulses. He’s gaining weight, eating well, having peaceful days. He’s not anxious or enraged. But when he wakes up in the morning his energy levels just flame and shoot out of his body. There isn’t enough in the world to quench his thirst for everything…food, sensation, pressure, sound, all of it. And then there’s his face and his nails.

Cody and I are trying to decide if we think these side effects warrant adding an additional medication to his tiny body. I’m so reluctant to do that. I wonder if the side effects are harmful for him, emotionally or physically, enough to warrant more drugs? I’m going to order a trampoline for our house and see if that helps.

For now, I sit in waitful worry. Maybe this will be his seasonal shift and we’re seeing it early. But maybe we’re in for the roughest November we’ve had yet?

What You Do When Your Eldest Child Has Autism

When your eldest child has autism, you worry about him all the time. You sit near your phone when he’s not with you, worried it will ring with news of a melt-down or caregiver wanting you to come remove him from his/her care. You sit near your phone when he is with you, waiting for call-backs from doctors and care providers or news of a long-awaited appointment with a specialist.

You find yourself pregnant, and you sit and you worry that this baby, too, will be diagnosed with autism and then you spend months wondering what you would do if there were two children under your care with such special needs. You lie awake at night and sweat, just thinking about it. When your baby gets the hiccups like your first son used to in utero, you worry this is a sign.

As your due date approaches, you make lists just like any other parent with older children who need care while mamas are off birthing. Except your lists are centered on your oldest child and his lists of helpers who all need phone calls to reschedule appointments.

In between contractions, you remind your husband to call the psychiatrist to cancel a med check, and then you remind your husband to please make sure your oldest child gets his meds. You realize as you labor that you failed to properly prepare your oldest child for the sounds you would be making in labor, for the way your body would appear and for the faces you might make. Your middle child is upset by this, too, but you know he’ll get over it and just turn the iPad louder. So you stop focusing on your breath and you worry, always worry, about your oldest child.

While you’re in the recovery room making frantic calls to your lactation consultant, you see that you’ve missed several calls from the school superintendent, calls you’ve been planning and waiting for for months. Your stomach sinks at the thought of another round of phone tag to square away this coming school year. You forget the lactation consultant and think instead of the summer you’ve spent preparing for your IEP draft, for the specially designed instruction you need to request so your oldest son can be successful at school. And there, in the recovery room with your baby not one hour old, you email the superintendent asking if you can reschedule the phone call for Monday because you’re busy right now.

Stunned to hear from you in this state, the superintendent agrees to reschedule the call, and for a few hours, you lie back and let your mind drift away from your oldest child while you get to know your newest.

New Medication or How to Argue with Insurance

I was so excited when we finally found a pediatric psychiatrist to manage Mikey’s medication. We initially had an appointment at a very large clinic, but it was taking me 10+ minutes to reach a human being when I had questions leading up to the appointment…plus I felt nervous about the fact that we had to schedule over a month out and there wasn’t a single other opening for another month!

A friend recommended a few names and we got Mikey in with a wonderful woman in Greenfield. We had such a great visit with her–I like her because Mikey likes her. She asked just the right questions to get him yabbering. Plus she helped him build Lego staircases.

She really listened to me discuss the side effects I was noticing to the second medication we’ve been trying and she observed some of the anxious behaviors that concerned me. We decided to try a new medication that’s liquid and banana-flavored. Though I wish she’d have asked me first before hyping up the banana flavoring to Mikey, who detests bananas. I quickly interrupted her and yelled, “Candy! She means the medicine tastes LIKE CANDY!”

This new doctor has very high hopes that the new medication will be a good fit, but it’s a relatively new product. Which meant, literally, 9 days of paperwork and phone calls trying to seek insurance coverage for it. What a mess!

First I had to take it to the pharmacy, who didn’t have it and had to order it. Then, according to the rules of this game, they had to try to order it, but first prove it was rejected by our insurance. Then, back to the psychiatrist for paperwork and authorization to get it approved by our insurance. (It costs over $200 per month without insurance. Yikes!) Then, approval from the insurance company had to be sent to the pharmacist, who had to type things into her computer for a VERY LONG TIME before telling me it would take until Tuesday (4 business days) to get the medication into the pharmacy.

Our psychiatrist explained that I’m not usually meant to be the go-between in this process, that the pharmacist is supposed to deal with her…but it’s better if I’m involved, because I’m persistent and follow through. Without my nagging, this stuff tends to sit around on desks somewhere for who knows how long.

THEN, after all that, Mikey is on such a low dose of the medication to start that the pharmacist had to properly mix and dilute it, or whatever it is that they do. I actually was standing around watching this part, which was pretty interesting and involved some beakers and swirling and a little eyepiece thingy like jewelers wear.

This new, banana-flavored medicine is still in the stimulant family, but is reported to have fewer negative side effects (in our case, anxiety all the time and increased aggression as the medication wears off…rebound effect, I think it’s called). We’ll try this small dose for 2 weeks and then regroup.

Thankfully, our pediatrician agreed after the second medication that it is indeed useful to seek an opinion from a specialist. We signed some papers so they can communicate with one another and hopefully, we’ll find a tool that helps Mikey be his best self.