Susan's Blog

Friday, August 31, 2012

A great doctor’s visit

Nat had an appointment with his psychopharmocologist, Dr. M, this afternoon. I met Nat there with John, our beloved House Manager. I wanted Dr. M and John to meet, both so that John could add his observations to the conversation, and also because he needs to be familiar with all of Nat’s professionals. For this particular visit, I wanted the discussion to be whether we should begin decreasing Nat’s Risperadone even further. He has always been on a very low dosage, and even lower since the winter, and he is doing spectacularly well since he moved into his adulthood situations. (Knock wood.) Since graduating, Nat has shown much more interest in communicating, he has also worked at two new jobs (CVS and now Shaws), he has a varied day program, he has moved into a house with three other guys (soon to be just two other guys) and caregivers.  Also, his younger brother now goes to college.  That’s a lot of change for anyone. And Nat has more than handled these changes; he has taken them and run with them.

I got to the doctor’s office before John and Nat. I sat there staring at my cell phone clock and all the little kids running around — Nat’s doc is at Children’s Hospital; I believe it is more important that he have continuity of care than a doctor/stranger meant for adults. The doctor feels the same way. All of Nat’s doctors and his dentist love him and have said he can go to them forever.  I glanced over to my right, though, and Nat came striding in, this striking young man, all tanned, blond and tall. The man from Ipanema. It was like a delivery of candy, seeing him. “Hi Ma-ee,” he said casually, and sat down next to me. Mmmm delicious. I was also happy to see John. No problem navigating the Boston medical area and its parking issues.  John is breathtakingly competent.

I was so proud sitting there next to my handsome, still, Nat, while little kids ran around and the parents looked tired and anxious. I was neither. But I remembered that so well. I wanted to tell them how it used to be, just so they’d know, and hang in there. Not everyone can be Nat, of course; in fact, only he can. But still. There’s so much hope swirling around us you just have to kind of wait, resting lightly, until it comes your way.

We went into room 25 and the doctor was so pleased with Nat. Nat was at his absolute best, where he strains his head forward towards you to answer your questions exactly right. It’s so odd, obvious, and dear that he’s trying so hard. I sat there with a bubble of laughter bouncing in my throat, ready to burst any moment.

In the end, we decided collectively not to fiddle with the dosage at this time. The doctor explained to me that Risperadone is not a personality-damping drug, not at this dosage, not at all. He said it is an anti-anxiety, for the most part, similar to the SSRI’s like Prozac. (But it is not one of them. It is a neuroleptic drug, considered an anti-psychotic, but not heavy handed like Haldol.) He said, “I would not recommend a change yet because you don’t want him to have any kind of regression or incidents, as he had in the past. He could lose so much, if he were to become anxious and push someone.” I know, I know. I remember so well.

Medicating someone need not be seen as a moral issue. Psychopharmocology is not as exact a science as cardiology; but think of how easy it would be to put Nat on heart medicine if he had heart issues. So instead he has anxiety and sensory and processing issues and certain drugs can target those. Why should I be ashamed of that? If the risks are extremely rare, and we monitor him so closely (labs, EKG’s, office check-ins). This medication, Risperdone, a.k.a. Resperadal, gave Nat a better life, rather than a reduced one. I don’t think we should shame parents for opting for meds if they help and we’re careful.

At one point the doctor turned back to Nat after he’d finished talking to John and me. He looked at Nat for a moment and then Nat said, “How you?” Dr. M was so startled by being asked a question by Nat that he didn’t get it at first. So Nat answered for him: “Good.” The doc was flustered and asked me what had just happened. I said, “He asked you how you were and when you didn’t answer him right away, he answered for you.”

The doctor was so pleased. “Oh, that is very kind of him,” he said. I was just delighted. The only thing I wished was different was for Dr. M to speak more directly to Nat, and not as much to me and John. I showed him the way, by including Nat in everything I said, like this: “So Dr. M was just asking me what you do during the day, Nat. Will you tell him?”

“You work at Shaws.”

God, will I ever get used to Nat answering questions like that? I think it will be a joy forever.



Wonderful! I can’t wait for J to become relaxed again. You always give me hope. Right now we are living with constant visual schedules to calm and reassure him that all will be as planned…it’s so tiring, but hopefully a lot of it is puberty related…we are also working on med adjustments to help with anxiety and sleep. I’m going to send you an email to get your Dr’s name at Children’s. I think I know who he is, and would love to hear more about him. Thanks for the Nat update…he’s come SOOOO far!

— added by Candy on Friday, August 31, 2012 at 8:36 pm

Tears. Just lots of “GO Nat!” tears!

— added by Jan bowser on Friday, August 31, 2012 at 8:42 pm

So GLAD for Nat. And you, Susan.

— added by Dixie Redmond on Friday, August 31, 2012 at 9:58 pm

So happy for you and Nat, Susan!

— added by Donna on Saturday, September 1, 2012 at 7:24 am

I’ve always felt meds were a personal choice and sometimes necessary.

When my eldest was 6 I finally put him on the risperdal. The mood swings etc were out of control. At 8.5 they rebounded and were removed. Then last Xmas – just after he turned 12 – he lost the ability to concentrate. That’s when we noticed. We did the eye test, and then to the child psych. He was put on Adderall and we’ve been to 15mg (which lasted a week) and are back to 5. Since April/May the moods started again. Last Wed he went on the non-stimulant on top of the Adderall. We’re on the lowest dose and we still have the rude mouthies but not the constant (and I mean CONSTANT) moodswings. 8 quiet hours/day. We are going to increase it – 3 different amounts – so hopefully it’ll last longer.

Unfortunately, like the adderall it stops working instantly and the change is drastic.

I cannot imagine anyone saying “oh they should just get over it”, but many parents do. How can anyone function like this??? It’s like ADHD but it’s hormone driven + passing for normal ASD.

I’d just make certain the Risperdal wasn’t creating those symptoms it was helping. Otherwise if it’s helping… keep going.

Nat’s speech is a lot like my 10yr olds. We attempted pushing full sentences with a word flip book and he just wasn’t interested. We decided that if he thought he had enough words and spoke how he wished to…. it wasn’t worth the fight. He’s learning, he’s telling us things when he wishes too, and unlike moody bro… he’s happy.

— added by farmwifetwo on Saturday, September 1, 2012 at 7:30 am

How awesome that Nat is doing so great! We have never had Dylan on any meds, but he has huge anxiety issues over fire alarms,school bells, lawnmowers, tree guys (as he calls them) certain loud animals, and of course when he encounters on of these things he just melts down. I don’t blame him, have you ever really thought about how loud those bells are at school? depending on where you sit, they can be ear piercing.I find that I am developing some sort of sensory issues to all these things too, I guess just in anticipation of Dylans reaction to them. I started dozing the other night and woke back up, and realized I had started dreaming about a chainsaw lol!

— added by eileen on Saturday, September 1, 2012 at 8:09 am

Love this!! You are definitely a comforting, positive, & hopeful ‘service provider’ for me and no doubt every one who reads your blog!!! Way to go Nat!

— added by Sarah Conley on Saturday, September 1, 2012 at 8:55 am

I know!!!

— added by Susan Senator on Saturday, September 1, 2012 at 11:49 am