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Question:

My son is 43. In 2008, fourteen years ago, he experienced an extremely high stress situation at work that resulted in behavioral changes that were unlike him. He was highly irritable, his typical OCD behaviors became unmanageable, and he created an imaginary friend that he began to carry around on his back. He left that job and saw a psychiatrist’s whose medication recommendations did not line up with the information in “Mental Wellness in Adults with Down Syndrome”. A trusted source in the Down syndrome community recommended I suggest a low dose of Sertraline to my son’s psychiatrist. The medication resolved all three issues. It was like getting my son back. Over the last fourteen years the Sertraline has been gradually increased as needed by his primary care doctor. My son is now at a much higher dose, 100ml, that is not as effective. He seems to be withdrawing into his imaginary world and the OCD is ramping back up. Might you be able to suggest where I can get information on an alternative medication to Sertraline that has been safely and effective for people with Down syndrome?

Answer:

Thank you for your question and I am sorry to hear about your son’s health issues. We have seen many people with Down syndrome (DS) who have had challenging life experiences who then developed symptoms of anxiety and obsessive-compulsive disorder (OCD). We have also seen many adults with DS who have used or use imaginary friends as a coping mechanism in response to those stressors.

There are several things to consider when a person has an increase or recurrence of symptoms. Contributing factors to consider include that the person has experienced an additional stressful situation, an additional health problem or a change in a present health problem is contributing, or the support system has changed. Another consideration is reduced medication efficacy. Sertraline (Zoloft) is a selective serotonin reuptake inhibitor (SSRI). SSRIs (and some other psychotropic medications) may lose effectiveness over time.

Another consideration is whether the individual will benefit from adding other therapies. Those might include counseling, art therapy, music therapy, assessing for relaxing activities, support to participate in activities, evaluating for and providing appropriate sensory strategies, and others.

After assessing for and addressing those issues, we review the medication. Sometimes raising the dose of the present medication will be effective. The dose of 100 mg is a mid-range dose of sertraline. The maximum recommended dose is 200 mg. Depending on the symptoms and evaluation findings, sometimes it is necessary to change the medication or add a medication.

We usually find that the medications for anxiety and OCD are adequate. However, sometimes, the depth of “withdrawing into his imaginary world” is very challenging and the response to medications for anxiety and/or OCD alone are not enough. In those situations, we consider the use of an anti-psychotic medication (most often adding it to the medication for anxiety/OCD).

More information is available from the chapter on anxiety and the chapter on OCD from the 2nd edition of our book Mental Wellness in Adults with Down Syndrome. The full book is now available as a free PDF in the Adult Down Syndrome Center’s Resource Library.