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Mental Decline & Regression in Down Syndrome

Regression and Mental Decline in Down syndrome.

Regression and Mental Decline in Down syndrome.

Last night my son was revisted by a symptom we had hoped was on its way out of his life: a staring episode like the ones that have plagued him over the past four years.  I’ve written a long post about this ordeal, with details of what we found relieves the symptoms of what appears to be  Oculogyric Crisis.

Just one month earlier, we began switching from Abilify to Geodone, with good results.  But unfortunately, we have noticed a recurrence of the staring episodes.  Which brings me to how I found myself, once again searching the internet for catatonic episodes, down syndrome and psychosis, this morning and came across this article: Catatonia May Be Behind Regression in Down Syndrome by Traci Pederson on the website.  It is very much worth reading, if you have a loved one with Down syndrome that is suffering from Schizophrenia or an unexpected mental decline.  The article talks about a study  by Dr. Judith Miles at the University of Missouri, MU School of Medicine, Thompson Center for Autism and Neurodevelopment Disorders and published in the Journal Neuropsychiatric Disease and Treatment.

In his mid-teens, my son showed great promise and was considered a very high functioning individual with Down Syndrome.  But as he neared graduation from High School, worrisome changes began to appear.  Over the course of the next several years, he began losing ground in his mental health and social skills.  I began to suspect he was depressed, autistic or both.  I’ve sometimes posted about his mental decline on his personal blog, but eventually stopped because I felt it was so depressing to family and friends, and not really reaching anyone who would benefit from the info I was posting.

When I read Traci Pederson’s post this morning, it confirmed to me what I have suspected for the past 5 years.  Although doctors have told me the Schizophrenia is rare in people with Down syndrome; I have wondered how many parents out there are grappling with the same heart-breaking decline in their young adult children with Down syndrome?  I decided to finally start the more anonymous blog I’ve been thinking about writing for years; so that we can share our hits and misses in unraveling the mystery of what is happening to kid’s lives that were once so full of promise.

3 thoughts on “Mental Decline & Regression in Down Syndrome”

  1. Holly says:

    The Catatonia article describes our daughter perfectly. We have also been through 4 years of this nightmare. I understand your pain. I hope we can find the key to this mystery that tortures both us and our children.

    1. DSPsychAdmin says:

      Hi Holly,
      Thanks for your comment. I hope my blog can draw attention to how many families are living this ordeal. Nightmare is right! I find conflicting information on how rare psychosis is in people with Down syndrome, but at the same time research that suggests people with DS are more likely to have early onset Alzheimer’s. And that Alzheimer’s Disease has a connection to enzymes (I think) related to the 21st chromosome. Therefore, people with 3 of chromesome #21, produce 30% more of that enzyme, and which increases their chance of dementia.

      One thing I find perplexing about the Catatonia Article, is that it talks about treatment with benzodiazepine, which to my surprise, is Xanax. This is the only medication that we have found to help end my son’s staring episodes once they start. Still, Xanax, is a pretty scary substance: so very addictive. We use it as sparingly as possible.

      The other treatment the article mentions is electroconvulsive therapy; which is pretty terrifying to think about! I plan to read the study myself, and see if there is helpful information that was not discussed in the Psych-Central article.

      Thanks for taking the time to read and comment!

  2. Julie chesal says:

    Mimi, are you still writing your blog?

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