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Starting Over

A father tries to stay patient with a fresh start to his son's medication.

In raising a child with autism, I’ve learned that there are many ways in which you need to be patient. 

There is shorter-term patience, like when you are trying to teach your child to , for instance. Then there is the longer-term variety, such as when you are trying to find a medication that will help your son.

We had Kai on various drugs for anxiety and attention deficits for several months, with little to show for them. 

Then, toward the end of last year, we switched over to a drug called Risperidone. For the first time, we saw positive results. 

Kai’s aggression diminished. His spirits soared. He was even sleeping better. 

Yet, we made the decision to stop the medication.

'Weighing' the good with the bad

One potential side effect of Risperidone is an increase in appetite and excessive weight gain. We noticed that with Kai almost immediately after we started him on the drug. 

He was constantly hungry. He was eating a lot more. And his belly was getting quite large. 

When we put him on my wife’s scale that measures body fat content, it confirmed our suspicions. Our son was getting obese.

We have tried to increase his exercise – it is our after all. But it hadn’t been enough to overcome his whopping food intake. 

We also tried to limit how much he ate, but it was really hard to do with Kai constantly telling us that he was hungry.

So we decided that a drug that had this effect was not healthy for our son. It was tough to pull him off a medication that had so many benefits – perhaps as tough as it was to to begin with.

Seeking a second opinion

Kai’s appetite diminished almost immediately after we stopped the drug. But he also seemed to get angrier much quicker than before. It felt like we were back to square one. Our patience was wearing thin.

Is there really no medical alternative that can provide positive effects without the detrimental side effects?

We decided to seek another doctor for a second opinion. 

The new doctor listened to our story. She was patient and spent more time with us than the previous doctor ever did. She didn’t make any promises. She acknowledged that this form of medicine is informed trial and error. But she had some ideas on what she might do for Kai.

She wanted to observe him at school, something the previous doctor never did.  And she suggested keeping Kai off all meds until the observation so she could see what he is like without drugs. 

We understand that a new doctor might not be able to do anything differently than the previous doctor. After all, there are only a limited number of drugs of this type to try. But this doctor’s demeanor and approach encouraged us, so we decided to give her a try.

About a week later, we spoke with her shortly after she observed Kai. She said that when Kai saw her at school, he approached her to find out who she was. It was remarkable that he would be so sociable with a stranger. 

She said that she saw how well he performed in his math class, but also how rigid he was when it was time to move on to a different subject.

She suggested that we start off with a medicine that is intended to help with Kai’s attention and focus. And then proceed slowly, conservatively from there. 

It has now been over one week with the new medication. Kai seems more jovial. His school reports that he has shown more flexibility. But his attention and focus are still not where it needs to be. Time will tell whether the drug will yet help with that.

I wish there was a quicker way to find out whether a drug will work or not. It is hard to wait, especially when it feels like we are starting over from scratch. 

But we are not ready to give up on medication yet. This fresh start has renewed hopes that we will yet find a drug that can help our son perform better.

I just need to be patient.     

Betsy Brock February 29, 2012 at 01:41 AM
This was very interesting. My boys have been on risperidone for 14 years now. The dosing is very important. I'm wondering if Kai's dose was too high? Maybe a lower dose would help with the positive things you were seeing without the hunger and weight gain. Just a thought. At his young age and weight, he should be getting it in liquid form and only have so many drops per day. A dose too high can cause a raised protactin level and even boys will begin to develop breast tissue, so it's really important to dose according to body weight. Best of luck...boy, have we tweaked meds and tried new ones so many times over the last 14 years. But when you finally hit on the right thing, it can be wonderfuL! :)
Yuji Fukunaga February 29, 2012 at 03:09 AM
Betsy, I wasn't aware that risperidone was available in liquid form. We had Kai on the lowest dose you can have in pill form, and the side effects kicked in when we increased it from there just a bit. Perhaps a liquid form would make it easier to increase the dosage by a small increment. We are trying other medicines for now, but may come back to risperidone if nothing else works. Thanks for sharing your experience.

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