Question:
My 24-year-old daughter has been diagnosed w/Major Depression and Anxiety, but is exhibiting many symptoms of regression and catatonia, and is very oppositional. We’ve been through 2 psychiatrist, 2 therapists, and a neuropsychiatrist with no success. Is there a particular kind of specialist who can best diagnose and treat her?
Answer:
People with Down syndrome can regress for many reasons including mental and physical health problems. These can include hypothyroidism, sleep apnea, depression, vitamin deficiencies, and many more. In addition, for decades, health professionals with a special interest in people with Down syndrome have noted cases in which teens or young adults with Down syndrome experienced a more puzzling decline in abilities. These individuals, usually in their twenties or younger, suddenly lost speech, cognitive, and daily living skills and often had behavioral or psychological changes. This (typically) more severe form of regression has been given several names, the underlying diagnosis has varied, and response to treatment has been mixed. There is not a name that has been agreed upon, but we (and some others) call it Regression syndrome. See links below for more information on regression and decline in skills.
In light of there being many possible causes for a person with Down syndrome to have a decline in skills or regression, a good history and physical exam is recommended as the initial step in the evaluation. Further assessment (labs, imaging/x-ray, and referrals to specialists) are determined by the findings in the history and physical exam. Various providers can assess and treat these individuals including primary care physicians or nurse practitioners, neurologists, psychiatrists, and/or others. A physician or other health care provider familiar with caring for people with Down syndrome, particularly those who have a decline in skills or regression, can be helpful (see information below for assistance in finding a provider). If such a provider is not readily available, the individual’s primary physician can initiate the evaluation and treatment and refer as needed.
There are a variety of resources for providers who are unfamiliar (and even those who are familiar) with caring for people with Down syndrome who are declining. The links below provide some information and recommended resources. In addition, the Down Syndrome Medical Interest Group (DSMIG-USA) has a work group on Adult Issues and Regression in which providers who provide care for people with Down syndrome, regression, and decline in skills work together to improve our understanding. That is a good resource for any provider treating these individuals. Providers can join DSMIG-USA and learn with a variety of providers about heath care for people with Down syndrome including those with regression.
Resources
- Presentation on Regression and Loss of Skills in Adolescents and Adults with Down Syndrome
- Collection of Resources on Decline in Skills and Regression
- Collection of Resources on Mental Health
Finding a Provider
Several national organizations have lists of Down syndrome clinics on their websites (Global Down Syndrome Foundation, National Down Syndrome Congress, or National Down Syndrome Society). If there is a clinic near you but adults are not seen by its providers, the clinic may be able to recommend a healthcare provider in the area who sees adults. Similarly, you may find a recommendation from your local Down syndrome organization or parent group. Several national organizations also have lists of local groups (Global Down Syndrome Foundation, National Down Syndrome Congress, or National Down Syndrome Society).