Are there certain sedatives or anti-epileptic meds to avoid in patients with IDD?

They are very interesting questions and I think “do no harm” relates to the issue of using any medication, whether it's an anti-epileptic drug or something for pain, or anything. Any medication can have an impact. 

When you think about someone with an intellectual or developmental disability (IDD) who may have some baseline level of cognitive dysfunction or even lack of verbal skills, and you consider giving a medication that could have side effects, I think it's really important to ask “How would you know?” if your patient could not easily explain it. 

I think one important thing about using medications, as an example, for seizures, is also asking “what is my aim?” and “What am I really trying to treat?”. In many cases, people with IDD can be highly refractory to medication and often will require multiple drugs that try to reduce their seizures. Another important issue is developing your relationship with the patient and caregiver so that you clearly understand what they are wanting to get out of the medication regimen, and you have to listen to them carefully when they report back on effect and/or side effects.

The issue of inpatient care is very interesting because it is very problematic. A lot of people with IDD (or not!) may not like being there. There is a lot of nuance wrapped up in protecting the patient from harm and staff from harm. Our responsibility is being able to care for them: assess and diagnose and treat them, but also not unnecessarily sedate them. We should prioritize putting them in an environment of safety and having a family member or a staff member to give them comfort, as compared to restraints, chemical or physical, though sometimes these tools truly are necessary.

Thank you so much for this question. It is a question of rights for the individual. The ability to provide medical care, especially when deemed to be an emergency versus the rights and possibly harm to the individual must always be thought of. I definitely think of this same scenario when people with IDD may be provided a sedative just so that they may be brought to my clinic for a routine appointment. I find this to be very disturbing and am pleased to now use telehealth in many circumstances for those who find it difficult to come to an office. I, in fact, find it very appropriate to be able to see them and watch them in more of a natural environment in which they are comfortable.

I agree that behavioral & environmental management strategies are the best first-line approach- including keeping the usual caregivers in place where possible since the hospital (and clinic) are strange & scary places. A facility I work closely with gives a single dose of alprazolam to some residents prior to external clinic visits, which can obviously affect a behavioral assessment if you're not aware this is done. I do clinics on-site, which also helps me to see them without their being sedated, their usual caregivers (and notes) are there, and the residents are in familiar surroundings. And it saves their transport time & costs. Obviously not practical for individuals or small group homes, though.

Hospitals may not have budgets or personnel to provide sitters and pandemic changes have exacerbated this everywhere. So this is a challenge for everyone. All individuals have a right to comfort & respect, or at the very least to minimize discomfort & restraint if necessary to render effective treatment. 

Many of my special patients are on antiseizure meds which may have behavioral benefits (think lamotrigine & valproic acid), and paying attention to meds which can adversely affect behavior is similarly important. If the addition of a particular medicine doesn't have any adverse behavioral effects, all well & good, otherwise, tracking and correlating cause & effect is crucial. I'm not a huge fan of sedation to help with cooperation- but sometimes you have to do what's necessary. For example, our hospital (and many others) has successfully used precedex for agitation while weaning from vents in special needs populations (IDD, dementia, substance withdrawal). 

But if all else fails, use the lowest dose of the least harmful agent that will effectively treat the issue. Also think of alternatives to antipsychotics & benzos (beta blockers, alpha adrenergic agents) and use side effects of meds for benefit (antianxiety with SSRIs) depending on your time frame. 

What is IDD?