And so I scheduled an appointment with his pediatrician. We have, beyond a doubt, the most amazing pediatrician in the world. Our old pediatrician was afraid of the kids and would walk into the room, quickly do his exam, and run out. It would've been comical if it hadn't been so frustrating. But Dr. Miller, she adores the boys and understands them. Her face brightens during our appointments and she always tells me that seeing Nick makes her day. She's awesome.
I showed her my bruises. I cried a little and she gave me tissues. She was beyond reassuring. "You are an incredible mother. Every time I see you I'm amazed by you. You have so much to manage, and you do it all glamorously. I wouldn't be able to do what you do."
We talked about options for medications, and rather than just throwing a prescription at him, she wanted to research and ask doctors who specialized in autism what the best course of treatment would be. "I don't want to harm him by trying to help him," she said. I was grateful for that; our old pediatrician blindly wrote prescriptions, with some horrific consequences.
She called later and told me that after conferring with colleagues she thought the best course of action was to get me into see a developmental pediatrician at the Melmed Center.
The Melmed Center is one of the premiere autism treatment centers in the nation. When Nick was two and we were living in Tucson, I drove the two hours to get Nick his initial diagnosis from the Melmed Center. They are incredible at what they do, which means they are busy.
Their first available appointments are in November.
Our awesome pediatrician called them and was able to get us an appointment for Monday.
The doctor at the Melmed Center was in awe: "I see mothers with bruises all the time, but in my ten years here I've never seen anything like that before." Randomly throughout the appointment she would stop and say things like, "he did all of that?" Do I get a trophy for Most Astounding Bruises? Because that would rule.
A thorough two hour appointment, and the result was this: a prescription for risperidone.
Risperidone, a medicine long-used for other illnesses, was approved as a treatment for tantrums, aggression, or self-injurious behavior in children with autism in 2007. Our doctor at the Melmed Center was part of the trial conducted by SAARC that led to its approval as a treatment for autism, so she really knows her stuff when it comes to this drug. Research shows a 69% improvement in irritability and aggression. There are some side effects, but the main one--weight gain--is something Nick really, really needs, so it's actually a bonus.
Nick had his first dose today, and even with that first dose, he's changed. Calm. Happy. He's not zoned out, as I was afraid he would be, but rather he is alert and engaged. Not a single pinch since he took the first dose, and that after a morning where he was so agitated that I called to cancel his speech appointment because I didn't want him to maul his therapist. There's an almost eerie silence--I'm so used to screams that it seems wrong when I don't hear them.
Medicating Nick was not something I did lightly. It's taken me a long time to get this point. I did not do it for me--I did it for Nick's quality of life. His fears, and the aggression that stems from them, are limiting his happiness and what he can do in life. I want to see him be able to go to a camp for children with disabilities and not get kicked out the first day because the staff can't handle him. I want him to be able to go to the store and not be petrified of the loud burst of air-conditioned cool that hits him as soon at the automatic doors slide open. I want him to have a full life. I know it's not a panacea, and I know that research says behaviors return as soon as the child stops taking risperidone, but it will give him a chance to feel at peace right now, for the first time since toddlerhood.
I want to track the effectiveness of the medication, and I figured the best indicator would be my arms. So I'm going to take pictures of them every day so that I can see, literally, how effective the medicine is over time. Here's our baseline, Day 1:
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| Nick's Day 1 smile |
5 comments:
I don't know why adding the pictures put a white background on my text. Annoying.
I thought the white highlight was for emphasis. :) Good Lord, I knew your bruises were bad, but they are award winning for sure!
Thanks for the update! Will Nick continue receiving treatment at Melmed, or was it a one time consult? I am SO hopeful for you and Nick!
We are going back in four weeks. The doctor will also be checking Nick's blood work every four months, just to make sure all his levels are okay and that the medicine isn't having any adverse effects. It's a 65-mile round trip, but worth it :)
we used risperidone for years. there was definite marked improvement. The one thing I will warn is that every mom I have ever talked to that used it for their child found that it made their kid ravenous for food. J was also on adderall at the time which is a suppressant so his hunger was evened out until he needed an increase in adderall.
A funny story from the MOM-NOS blog is when her Bud was so hungry that she would have to lock food up at night and keep the fridge bare. She woke up one night to find him eating butter from the tub.
I hope that it continues to work for Nick for a long time. When it stopped working for J's OCD but was still controlling his aggression well, we added an SSRI in a small dose and it helped.
I thought I remembered you saying J was on risperidone and I was thinking about messaging you on fb to ask about his experience with it--but you beat me to it! :) Nick only weighs 41 pounds. And he's seven. He's below the 5th percentile for weight and we're desperately trying to get more fat and calories into him. He did, coincidentally, eat an entire bag of Doritos this afternoon after his first dose, lol. I want him ravenous--but hopefully we can skip the eating butter from the tub ;)
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