Question:
My son was bullied at school. He then started to shut down on himself and the professionals involved failed to diagnose him properly. He stopped sleeping, eating and engaging. 1 year later we got him diagnosed with PTSD with psychosis. He was prescribed Aripiprazole and melatonin. 10 years later he has not been able to come back like he was. He is incontinent and needs support for daily task including having a bath. Yet before he was very active. My question is has anyone recover from PTSD and if so how? Can you recommend any specialist that could help us? In 2009 we got an opinion from Dr Capone through the NDSS. He told us damage can be irreversible if not treated properly on time.
Answer:
Post-traumatic stress disorder (PTSD) is a mental health condition in which an individual develops psychological symptoms in response to some trauma. The symptoms can vary and may include “flashbacks” or vivid memories of the trauma, anxiety, depression, psychotic symptoms, intense avoidance of the event, place, person, etc. that were associated with the trauma, and others. Our sense at the Adult Down Syndrome Center is that the trauma is “in the eye of the beholder.” In other words, what one person may find traumatic, another might not. Horrific accidents, war, violence, etc. are easily understood and nearly universally perceived as traumas. However, we have noted that what some others would consider a non-traumatic event can be traumatic to one of our patients. In a sense, it does not really matter if someone else does not see the inciting event as traumatic; it is important if the person who is experiencing the symptoms has perceived it as traumatic.
We have long thought that people with Down syndrome (DS) are more likely to be susceptible to PTSD because of their tendency towards strong visual memories. Many people with DS seem to have photographic memories. Some even seem to have “videographic” memories. They seem to be able (or almost able) to replay a memory as if they are turning on a video. If the memory is a negative one, that ability to replay it would seem to be a factor in PTSD.
When we have reviewed the number of individuals with certain mental health conditions in our health care system, we have found that PTSD is less common in people with DS that those without DS. We think that the reason is that a significant problem in diagnosing PTSD in people with DS is that often the person is not able to inform others what the trauma is or was. Therefore, we diagnose the effect (such as anxiety, depression, regression, etc.) but do not diagnose PTSD because we do not have a clear history of the trauma.
The description of your son includes symptoms consistent with a loss of skills. Loss of skills is part of the symptom pattern seen in “Regression syndrome.” That is the condition that is not formally named but can affect people with DS. Sometimes it seems to occur in response to a trauma and can last a long time. However, when correctly diagnosed and treated, even after years of symptoms, we have seen some individuals get better.
We have answered two previous questions on regression on the myDSC page and I refer you to them for more information. The first Q&A in the Regression category also has suggestions on finding a mental health provider.
In addition, I refer you to the recently published 2nd Edition of Mental Wellness in Adults with Down Syndrome written by Dr. Dennis McGuire and me. There is a great deal of information (far more than I could share here) in the book that may pertain to this question and potential treatments including:
- Chapter 6 on visual memory
- Chapter 12 on sensory processing (by Dr. Katie Frank)
- Chapter 14 on mental illness and its precipitants
- Chapter 16 on treatment approaches
- Chapter 17 on mood disorders
- Chapter 20 on psychotic disorders
- Chapter 27 on regression• Chapter 6 on visual memory
• Chapter 12 on sensory processing (by Dr. Katie Frank)
• Chapter 14 on mental illness and its precipitants
• Chapter 16 on treatment approaches
• Chapter 17 on mood disorders
• Chapter 20 on psychotic disorders
• Chapter 27 on regression