Tuesday, September 7, 2010

Your Experience?


Do you or your children take the medicine Risperidone? It's sometimes called Risperdal. Ashley has been taking it for many, many years, and I believe it was first prescribed to help with what we viewed at the time as aggressive behaviors.

Risperidone is often prescribed to children diagnosed with Autism. Ashley is not diagnosed with Autism but many of the behaviors related to Deafblindness are very similar. Here is a better description from the National Institute of Health:

Risperidone is used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions) in adults and teenagers 13 years of age and older. It is also used to treat episodes of mania (frenzied, abnormally excited, or irritated mood) or mixed episodes (symptoms of mania and depression that happen together) in adults and in teenagers and children 10 years of age and older with bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods). Risperidone is also used to treat behavior problems such as aggression, self-injury, and sudden mood changes in teenagers and children 5-16 years of age who have autism (a condition that causes repetitive behavior, difficulty interacting with others, and problems with communication). Risperidone is in a class of medications called atypical antipsychotics. It works by changing the activity of certain natural substances in the brain.

And here is a list of some of the negative effects of Risperidone:

The most common adverse reactions observed in all clinical trials with RISPERDAL® occurring at a rate of at least 10% were somnolence, increased appetite, fatigue, rhinitis, upper respiratory tract infection, vomiting, coughing, urinary incontinence, increased saliva, constipation, fever, tremors, muscle stiffness, abdominal pain, anxiety, nausea, dizziness, dry mouth, rash, restlessness, and indigestion. Tardive Dyskinesia (TD) is a serious, sometimes permanent side effect reported with RISPERDAL and similar medications. TD includes uncontrollable movements of the face, tongue, and other parts of the body. The risk of developing TD and the chance that it will become permanent is thought to increase with the length of therapy and the overall dose taken by the patient. This condition can develop after a brief period of therapy at low doses, although this is much less common. There is no known treatment for TD, but it may go away partially or completely if therapy is stopped.

Obviously this is a pretty powerful medication. What worries me is not the weight gain that Ashley experienced from taking Risperdal, or to some degree some of the other side effects such as urinary incontinence, and a general appearance of being 'foggy' most of the time. My biggest concern is the chance of Tardive Dyskinesia.

With ever increasing frequency this summer, I have noticed facial grimacing and other uncontrolled movements. Although Ashley is on a very low dose (.5 mg), she has been taking Risperdal for many years, and often the TD will appear after several years.

We don't see Ashley's neurologist again until early October, but I have made the decision to reduce her dose slowly. I'm just curious what other's experience with this drug might be.

7 comments:

  1. I've only heard a lot of negative things about this drug this year. It is really only supposed to be used for treating mental illness. The company that makes it has been trying to boost profits by recommending it for many off label uses. I know there have been some lawsuits against J&J this past year. I would Google it and look it up on Webmd.

    Have you ever taken her off of it to see if she even needs it anymore? If she has been on it for years maybe she doesn't need it anymore due to her natural maturation and development. We have had many serious behavoir problems with our son and never medicated him for them because very often his "negative" behavoirs are his only way to communicate that he is in pain, frustrated, something is wrong, etc.

    I don't judge you or anyone else that medicates their kids because sometimes it is the only thing that works. But I worry that it may actually be harming them if their "negative" behavoir is an attempt to communicate. I also think that kids should be taken off meds occasionally (unless medically necessary, like my son's Epilepsy meds) because they may not need them anymore or may need a different medication.

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  2. Dustin was on Risperdal for years and we had some success, It began being too ineffective and we had to pull out "the big guns" and go to Chlozaril. Going off of it was HORRIBLE though so be careful.

    My daughter was on it for about 5 months and gained 28 pounds. She was taken off it and put on Geodon recently and it works far better.

    Good luck!

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  3. Okay- we were on the Risperidone with awesome results until the "grimacing". His psych told me to stop the Risperdal immediately, and she wanted us in with a neurologist whom specialized in movement disorders. We went, and he was able to rule out TD, but diagnosed him with Tourette Syndrome. It turns out that if there is an underlying tic disorder, some of these meds bring out or emphasize the tics.

    FYI (and you know I am no doc), TD motor movements to look for are a "rolling" tongue (tongue acts as if it trying to get peanut butter stuck to inside of cheeks), and a "roving" movement where the tongue is kind of lolling along the corners of the mouth (same peanut butter scenario). The movements are more of a slow and steady movement, rather than jerky or in rapid succession.

    Link to my post of the visit: http://mommydearest1514.blogspot.com/2007/11/scuse-me-youre-stepping-on-my-brain.html

    Just our experience. And we did switch to Abilify. He still tics, but at least now we know why.

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  4. Our son has been on Risperdal for the last couple of months with some success with his moods.

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  5. Good luck with whatever you decide.

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  6. Is there a way to get in touch with her neuro before the appointment and maybe ask what to do? I emailed Skyler's opthalmologist the other day because he's turning his left eye in now and I'm not sure if we need to keep patching it. Maybe you could email her neuro or give them a quick call.

    Not sure if that costs money in the states I know here in Canada healthcare covers everything so I don't have to worry about being billed for a phone call.

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  7. I am takeing that and have started it this summer as well. At first I seemed kinda out it around lunch time. My weight I think has not increased a lot I need to have a fallow up apportment soon so will let u know how it goes

    ps my mom is happy with the results and me well u get the idea

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