I took Nick for his follow-up at Melmed today. Last time our doctor kept interjecting at random times during the appointment, "He did all that? All those bruises are from him? I've never seen a mother that bruised." She was just so shocked by the bruises that she couldn't keep herself from returning to them.
Today it was the same thing. She was so shocked that she kept interjecting, "Look at him; he's so calm. He's not hand stimming. He's not humming. He's so calm!"
I loved that she could see it so clearly.
Nick was awesome at the appointment. He got out of the car with ease and he handled the chaos of a very busy waiting room well. He took off his shoes as soon as we got in the door, but that was a behavior I could definitely manage ;) When it was time for the doctor to weigh him, he went right over to the scale and stood still; when it was time to measure his height, he went right over to the ruler on the wall and stood tall. He smiled when he doctor listened to his heartbeat.
We're going to keep him on the Risperidone, since it is working so well, and in a few months we'll look at adding an additional medication for ADHD.
Best of all? Nick is now 48 pounds. Which moves him from the bottom of the scale to the 50th percentile! For the first time in his life, his weight is blissfully, wonderfully average. 'Average' is a word I never hear when it comes to my children; it's got a beautiful ring to it.
Monday, July 23, 2012
Monday, July 16, 2012
Boobies! (Or, Day 28)
Risperidone can affect hormone production, specifically prolactin.
This evening Nick had his shirt off and Joe and I were marveling. "Look at his belly!" "I know! It's awesome!"
Nick has always had a rather concave stomach. And protruding ribs. And bony legs. At his last well-child visit, he was below the third percentile for weight. He was severely underweight.
Luckily for us, one of the major side effects of Risperidone is increased appetite. Nick started to eat, ravenously. He gained several pounds. His belly actually bows out a little bit now instead of caving in.
All this time trying to increase his weight, and a drug comes in to work wonders in just four weeks. Yes, we marvel at the belly.
"Look at his belly! And he's got little boobies!" I exclaimed, noticing the tiniest bit of fat there for the first time.
"I know, that's what I said!" I remembered then that Joe had said something about a bit of weight in Nick's chest a few days ago.
I was tickled by it. He was gaining so much weight that he was even getting a tiny bit plump in the chest. Yes!
A couple of minutes later, though, I remembered back to the conversation I had with Nick's developmental specialists. She outlined the risks and side effects of risperidone. She had said something about it affecting his hormones. That was why she was going to test his blood every couple of months, to make sure his hormone levels were okay.
Prolactin, that's what she was looking for. I knew all about prolactin from being a mom--it's the hormone that spurs milk production.
No, no, no. There can't be a hormonal issue--he can't go off this drug.
I touched his chest. Behind his right nipple, I felt a lump. It was very familiar feeling, so much like what I felt in my breasts when I was lactating.
No, no, no. He can't go off this drug.
I did what it is that I do--I scoured medical journals for answers. I found a study conducted by University Hospitals of Cleveland about prolactin levels in children taking risperidone. It found that prolactin levels increased in both females and males, peaking at about three times normal levels at 4 to 7 weeks of treatment. Crap. Nick's hitting that zone now, he's getting to the highest prolactin levels.
But then I read more. After 4 to 7 weeks, the levels go down. By weeks 8 to 12, the levels drop to almost normal in males. Phew.
I have an appointment with his specialist on Monday and we'll get it all checked out, of course. But for now, until the levels go back down, I've got a little boy with some tiny, tiny little boobies.
This evening Nick had his shirt off and Joe and I were marveling. "Look at his belly!" "I know! It's awesome!"
Nick has always had a rather concave stomach. And protruding ribs. And bony legs. At his last well-child visit, he was below the third percentile for weight. He was severely underweight.
Luckily for us, one of the major side effects of Risperidone is increased appetite. Nick started to eat, ravenously. He gained several pounds. His belly actually bows out a little bit now instead of caving in.
All this time trying to increase his weight, and a drug comes in to work wonders in just four weeks. Yes, we marvel at the belly.
"Look at his belly! And he's got little boobies!" I exclaimed, noticing the tiniest bit of fat there for the first time.
"I know, that's what I said!" I remembered then that Joe had said something about a bit of weight in Nick's chest a few days ago.
I was tickled by it. He was gaining so much weight that he was even getting a tiny bit plump in the chest. Yes!
A couple of minutes later, though, I remembered back to the conversation I had with Nick's developmental specialists. She outlined the risks and side effects of risperidone. She had said something about it affecting his hormones. That was why she was going to test his blood every couple of months, to make sure his hormone levels were okay.
Prolactin, that's what she was looking for. I knew all about prolactin from being a mom--it's the hormone that spurs milk production.
No, no, no. There can't be a hormonal issue--he can't go off this drug.
I touched his chest. Behind his right nipple, I felt a lump. It was very familiar feeling, so much like what I felt in my breasts when I was lactating.
No, no, no. He can't go off this drug.
I did what it is that I do--I scoured medical journals for answers. I found a study conducted by University Hospitals of Cleveland about prolactin levels in children taking risperidone. It found that prolactin levels increased in both females and males, peaking at about three times normal levels at 4 to 7 weeks of treatment. Crap. Nick's hitting that zone now, he's getting to the highest prolactin levels.
But then I read more. After 4 to 7 weeks, the levels go down. By weeks 8 to 12, the levels drop to almost normal in males. Phew.
I have an appointment with his specialist on Monday and we'll get it all checked out, of course. But for now, until the levels go back down, I've got a little boy with some tiny, tiny little boobies.
Sunday, July 15, 2012
Day 27
Risperidone is no cure. (Not that I thought it was, but now I have seen it, for sure).
We took the gamble of taking Nick to Reno. We knew it was a lot to ask of him, but we wanted to give it a try.
We left at about 2 AM, hoping the boys would sleep through the first part of the drive. Noah did. Nick didn't. He sat quietly in the dark of night, sitting up tall so that he could see headlights pass by. He was silent for hours until, out of nowhere, he loudly proclaimed, "Joe tickle Nicowis!!" We could hardly stop laughing.
We drove. And drove. Past the ghosts of mining towns, past the never-ending fields of sagebrush, past the run down purple double-wides that housed brothels. Just seeing those makes you want so scrub your skin off with Purell.
Nick. Was. Incredible. Joe and I were in a perpetual state of awe. He was in heaven with the motion of the car and the sights moving past the window. So awesome!
We got to my mom's house and he did well. When he's in a new environment and feels stressed and out of control, he finds the light switches and flips them on and off. I think it is soothing for him because it is one thing he can control in a vast sea of uncertainty. He did that. A lot. For several days.
The dog added to his stress. Instead of tantruming, though, he ran into either my parents' or my nephew's bedroom, closed the door, and hid under the blankets. I didn't like him experiencing that stress, but he did a great job of finding a positive coping strategy to get through it. Yay Nick!
By the third day, though, he was reaching his limit.
We took a trip to Tahoe. On a Friday. On a holiday weekend.
Horrible plan.
It was stop and go traffic around the lake. Mile after mile, we crept two feet and stopped, crept two feet and stopped. It wasn't just Nick--all four of us were beyond frustrated with the traffic. Eventually we turned around and headed back . . . with one pit stop.
Oh Chocolate Nugget, I love you. Your peanut butter fudge is the bomb. I cannot resist you!
Nick didn't share my love. It all started with a half-open door to a room that said "employees only" on the door. Nick wanted to go in to flip the light switches. I didn't let him. He wanted to close the door because half-open doors really bother him. I wouldn't let him. I steered him toward another part of the store and he kept trying to pull away to go back to the door. I wouldn't let him.
Just when I thought I'd succeeded in distracting him from the door, he started to scream, to pinch, to drop to the floor as dead weight.
It was the first tantrum I'd seen since he'd started the medicine.
Joe took him outside. They walked over to see the giant prospector on the hill--I think he must be a brother of the lumberjack on Stone in Tucson. Nick calmed.
That night we went to my brother's house for dinner. Another dog, another new environment. Nick was a champ again, using coping strategies to avoid the chaos. For about an hour he hung out alone in his cousin's room playing with a Lego City set, and after that he alternated between burying himself in the blankets on my brother's bed and flipping the light switches in the master bath.
The next morning, Nick decided he was done.
He put on his shoes and said to me, "Let's go bye-bye house."
Sure! You used language! I'll do whatever you want!
My dad needed some post-surgery supplies, so I could get Nick out of the house with a Target run.
As we pulled into the Target parking lot, Nick started to scream. When I tried to get him out of the car, he kicked. He hates big box stores, but it was more than that--when he asked to go bye-bye, he was asking to go home, and I took him to the wrong place.
Joe got Nick some Doritos--his current favorite thing in the universe--and drove Nick around while Noah and I quickly shopped. Then it was time to brainstorm what to do to keep Nick happy.
We decided to go to a park. On the way, we stopped at a 7-11 to get some drinks.
Another meltdown. 7-11 is not where Nick wanted to go. Not at all. I drove him around while the guys got the drinks.
The park would make it all better, I was sure. We pulled into the playground at Rancho San Rafael.
Nick played on the equipment for a few minutes, but he just couldn't calm himself. He ran frenetically. He tried to get into the stuff other parents had brought to the park. He tried to run away.
I took him over to a sandy horseshoe pit, thinking the sand would calm him. I was wrong. I took him on a walk around the pond, thinking that would calm him. I was wrong. He kept trying to run into the private party on the pagoda, kept freaking out about the broken drinking fountain, kept trying to get under the ropes blocking off access to the pond.
I steered him back toward the parking lot--it was time to go. We didn't get back in time, though. The tantrum started.
He screamed. He pinched. He fought for dear life. I threw him over one shoulder, wondering if the families at the park would wonder if I was kidnapping him with the way he was fighting against me. Joe had heard the screams long before I made it back to him, so he and Noah were ready to go when Nick and I made it to the parking lot.
Phew.
We left town that night.
It took a couple of days for Nick to recover. He was on edge even though we were home.
My arms are still recovering. I wrenched my neck by sleeping in the car and I was going to get a massage this weekend to loosen it up. But when I took a look at my arms Saturday morning, I was too embarrassed to go let some stranger see my bruises. I looked like a domestic violence victim. I know that I shouldn't care what others think, but the thought of someone I don't know seeing that was too much.
Baby steps. It's about baby steps. Nick is making progress, in his time. His language is coming back. This week he's up to 86 words and 63 requests. He's using sentences like "I want Dorito, please." He's making such great strides.
Maybe, someday, he'll even be ready for a five-day road trip.
We took the gamble of taking Nick to Reno. We knew it was a lot to ask of him, but we wanted to give it a try.
We left at about 2 AM, hoping the boys would sleep through the first part of the drive. Noah did. Nick didn't. He sat quietly in the dark of night, sitting up tall so that he could see headlights pass by. He was silent for hours until, out of nowhere, he loudly proclaimed, "Joe tickle Nicowis!!" We could hardly stop laughing.
We drove. And drove. Past the ghosts of mining towns, past the never-ending fields of sagebrush, past the run down purple double-wides that housed brothels. Just seeing those makes you want so scrub your skin off with Purell.
Nick. Was. Incredible. Joe and I were in a perpetual state of awe. He was in heaven with the motion of the car and the sights moving past the window. So awesome!
We got to my mom's house and he did well. When he's in a new environment and feels stressed and out of control, he finds the light switches and flips them on and off. I think it is soothing for him because it is one thing he can control in a vast sea of uncertainty. He did that. A lot. For several days.
The dog added to his stress. Instead of tantruming, though, he ran into either my parents' or my nephew's bedroom, closed the door, and hid under the blankets. I didn't like him experiencing that stress, but he did a great job of finding a positive coping strategy to get through it. Yay Nick!
By the third day, though, he was reaching his limit.
We took a trip to Tahoe. On a Friday. On a holiday weekend.
Horrible plan.
It was stop and go traffic around the lake. Mile after mile, we crept two feet and stopped, crept two feet and stopped. It wasn't just Nick--all four of us were beyond frustrated with the traffic. Eventually we turned around and headed back . . . with one pit stop.
Oh Chocolate Nugget, I love you. Your peanut butter fudge is the bomb. I cannot resist you!
Nick didn't share my love. It all started with a half-open door to a room that said "employees only" on the door. Nick wanted to go in to flip the light switches. I didn't let him. He wanted to close the door because half-open doors really bother him. I wouldn't let him. I steered him toward another part of the store and he kept trying to pull away to go back to the door. I wouldn't let him.
Just when I thought I'd succeeded in distracting him from the door, he started to scream, to pinch, to drop to the floor as dead weight.
It was the first tantrum I'd seen since he'd started the medicine.
Joe took him outside. They walked over to see the giant prospector on the hill--I think he must be a brother of the lumberjack on Stone in Tucson. Nick calmed.
That night we went to my brother's house for dinner. Another dog, another new environment. Nick was a champ again, using coping strategies to avoid the chaos. For about an hour he hung out alone in his cousin's room playing with a Lego City set, and after that he alternated between burying himself in the blankets on my brother's bed and flipping the light switches in the master bath.
The next morning, Nick decided he was done.
He put on his shoes and said to me, "Let's go bye-bye house."
Sure! You used language! I'll do whatever you want!
My dad needed some post-surgery supplies, so I could get Nick out of the house with a Target run.
As we pulled into the Target parking lot, Nick started to scream. When I tried to get him out of the car, he kicked. He hates big box stores, but it was more than that--when he asked to go bye-bye, he was asking to go home, and I took him to the wrong place.
Joe got Nick some Doritos--his current favorite thing in the universe--and drove Nick around while Noah and I quickly shopped. Then it was time to brainstorm what to do to keep Nick happy.
We decided to go to a park. On the way, we stopped at a 7-11 to get some drinks.
Another meltdown. 7-11 is not where Nick wanted to go. Not at all. I drove him around while the guys got the drinks.
The park would make it all better, I was sure. We pulled into the playground at Rancho San Rafael.
Nick played on the equipment for a few minutes, but he just couldn't calm himself. He ran frenetically. He tried to get into the stuff other parents had brought to the park. He tried to run away.
I took him over to a sandy horseshoe pit, thinking the sand would calm him. I was wrong. I took him on a walk around the pond, thinking that would calm him. I was wrong. He kept trying to run into the private party on the pagoda, kept freaking out about the broken drinking fountain, kept trying to get under the ropes blocking off access to the pond.
I steered him back toward the parking lot--it was time to go. We didn't get back in time, though. The tantrum started.
He screamed. He pinched. He fought for dear life. I threw him over one shoulder, wondering if the families at the park would wonder if I was kidnapping him with the way he was fighting against me. Joe had heard the screams long before I made it back to him, so he and Noah were ready to go when Nick and I made it to the parking lot.
Phew.
We left town that night.
It took a couple of days for Nick to recover. He was on edge even though we were home.
My arms are still recovering. I wrenched my neck by sleeping in the car and I was going to get a massage this weekend to loosen it up. But when I took a look at my arms Saturday morning, I was too embarrassed to go let some stranger see my bruises. I looked like a domestic violence victim. I know that I shouldn't care what others think, but the thought of someone I don't know seeing that was too much.
Baby steps. It's about baby steps. Nick is making progress, in his time. His language is coming back. This week he's up to 86 words and 63 requests. He's using sentences like "I want Dorito, please." He's making such great strides.
Maybe, someday, he'll even be ready for a five-day road trip.
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