Category Archives: Doctors

Eyes

As you can see in the cover photo for this blog, Mikey has always tilted his head to the side to play with wheeled toys. Therapists tell me this relates to executive function, and it’s something common among kids with ASD. He continues to do this, but I’ve also noticed a ton of squinting lately.

Really, the past five months. He squints when he’s building with Lego, he squints looking at screens, he squints when he reads. He keeps passing vision tests at the pediatrician and screenings at school, but worry simmered just beneath my surface.

Just when I had decided to call an eye doctor about it, the school nurse called to tell me Mikey failed his stereo/depth perception screening. She said she administered it several times, because she’d never seen a kid fail just that and not the other aspects of the vision screening.

I decided to call a developmental optometrist whose office is about a half hour away. I’m not entirely sure what that means, to be honest, and I already know the person will suggest a vision therapy not covered by insurance. I also know that I won’t be making regular drives up to this office to receive expensive vision therapy not covered by insurance. And maybe I don’t believe in the therapy?

Basically, I’m a little worried about voodoo pseudoscience, but I also know there’s something going on with my son’s eyeballs, and I want to learn all I can and try to help him.

Thankfully, the doctor had an opening on a day my mom is in town to stay home with the other boys, so I’ll just have to pull Mikey out of school early and he and I will get a special date together as we trek up to Wexford to learn about his wonky eyeballs.

Re-Sensitized

Ever since getting the all-clear from the allergest, Mikey has been a cautious peanut eater. By this I mean that once every few months, he will agree to eat something that’s been near a peanut.

Yesterday, he sat with Cody on the couch and asked to share his snack–peanut butter pretzels. These, Mikey quickly realized, are delicious. He started scarfing down the peanut butter pretzels, maybe eating a cup? Maybe a cup and a half of them.

And almost immediately, he broke out in a bright red rash all around his mouth and complained of itching. We gave him Benadryl, and he pretty much talked about itching until bedtime 2 hours later.

A call to the on-call allergist fellow (how awesome is it that we live in a place that has pediatric allergists on call??) revealed that apparently, kids can get re-sensitized to peanuts even after passing a scratch test. Even after getting bloodwork that showed no allergy to peanuts.

The current thinking is that kids need tiny, frequent exposure to peanuts (she said something like one peanut a week) to maintain…I can’t remember her word. Immunity doesn’t feel right, but I’m in a dither.

Anyway, we ran in for an emergency epi pen prescription and I’m back on red alert. I’m to maintain “strict avoidance” until we can get in with Dr. G. This means school is a minefield again. We have nothing in place anymore!

Our cupboards are filled with peanuts. I freaking subscribed to peanut butter on Amazon. Most days, the only food Alex will agree to eat is peanut butter sandwich. I’m not ready to go back to scrutinizing labels, keeping an epi injector on me at all times, harping on school to get kids to wash hands after lunch and before touching communal materials.

And, of course, Mikey has gotten used to eating school lunch, which I can never guarantee is peanut-free. So I’m anticipating meltdowns over packed lunch. Which, of course! I have to PACK.

Lesson learned: There’s always another shoe and it’s always going to drop.

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.

The Honeymoon Has Ended

We’re just about a month into a spurt of behavior with Mikey that tells me either we got a bad, bad batch of pills or else we need to adjust his medication. He is a total wild man, maybe more wild than before the meds, but it’s hard to say because he was doing SO WELL for two months that I forgot what it was like to navigate a day with his raw self.

He wakes up every day at five, which is normal for him, but is having trouble falling asleep, even with melatonin. Sometimes he wakes up in the middle of the night, too. Insomnia is a big side effect of his medication–I’m not willing to get him on a prescribed sleep medication on top of it, so…

He’s also displaying signs of anxiety. He has always run a bit anxious, like his mother, but lately he’s been having terrible nightmares. They are anxious dreams, where his toys come to life and run away from him or else his suitcases blow out the window and all his professional clothes get driven over on the highway. It breaks my heart when he tells me he’s scared to go to sleep because he doesn’t want to have the bad dreams. He asks me how he can change the dreams or get the things to stop while he’s asleep. Anxiety is another side effect of the medication.

And, of course, even on the drugs he’s been aggressive at school this past month. I can no longer attribute the behaviors to staircase days stemming from overtired parents with no remaining patience just screaming at him all morning. No. There’s something else going on. It’s like the medication barely takes the edge off his impulsive behaviors anymore.

I looked at the pill bottle and we do get the generic. Another parent told me generic medications can vary by up to 30% (per cent of what? I have no idea), so this makes me wonder if we maybe did get a bad batch. Who’s to say the next batch will be a different one?

I’m in the state of exhausted tunnel vision where I can’t even make a phone call to schedule a consult with our doctor about it. I can’t figure out the logistics of how the hell I’d get some time without kids to go sit in the doctor’s office and have a conversation with him about Mikey. Which, of course, tells me I need to go to bed, even though it’s not yet 9pm.

When Mikey gets up in 8 hours, he’s not going to be a peaceful, drowsy boy. He’ll be more like a rabid raccoon…

It’s hard to rein in my feelings of disappointment and, to an extent, despair. I hardly dared allow myself to hope that medication could improve our lives, and then it DID! And we had two magical months where my kid was just challenging to parent instead of seemingly-impossible. And I let myself ease up and pretend things would always be this way. We made a plan to taper off and graduate from wrap-around services, for fuck’s sake.

So now I’m frustrated by all these layers of emotions and feeling really doubtful whether we’ll find resolution. Perhaps another thing that’s holding me back from actually going to talk with our doctor. Can’t we all just lie on the couch and eat soft pretzels?

Chokey Cough

Mikey has been dealing with an asthma flareup for the past week. It’s awful–I feel so terrible for him. He’d been coughing sporadically and we’d been giving him his inhaler for what he called his “chokey cough.” I still felt like he could go to school, though I was anticipating maybe getting a call home about his coughing.

We got a call to pick him up from school Tuesday and I didn’t quite think he was bad enough to take to the emergency room, but we were due for a massive ice storm/snowfall that night and I couldn’t get in to the pediatrician in time to also collect Alex from the sitter…so off we went to Children’s.

He was prescribed a strong dose of Prednisone to control his coughing, and we were told it was ok to continue to give him his “good choices medication.” So the next day school was in session (he ended up home with me one day for snow/steroids), he was a little…calmer than usual.

And of course, school called again! They called to tell me he was staring off into space and not responding to questions. The poor kid can’t win. He’s too energetic one day, too calm the next.

To be fair, it is startling to see Mikey sitting calmly and not talking. If his teacher is used to him escaping from school, running circles around the classroom, and shoving other kids, I can see how she might be concerned. Unfortunately, I was teaching during the call so she got in touch with Cody, who failed to explain that there was a medication reaction happening, so off we went again to pick him up.

At any rate, 2 days of the ‘roids were enough to help him, we have a new type of inhaler now. He’s no longer coughing and he seems to be pretty balanced on this medication. We managed to go through the entire school day Monday without a call home, so that’s one for this year! Maybe we won’t get a call today, either!