Can Children with Neurodegenerative Diseases Benefit from OCD Treatment?

What you need to know

• Children with neurodegenerative diseases can develop symptoms of mental health conditions like obsessive-compulsive disorder (OCD)
• Standard OCD treatments can be adapted for children with cognitive impairments and other disabilities
• A combination of medication and cognitive-behavioral therapy may be beneficial, with parents taking on a larger role in implementing the treatment

Background on neurodegenerative diseases in children

Neurodegenerative diseases are conditions that cause progressive loss of function in the brain and nervous system. In children, these rare diseases can lead to gradual declines in vision, motor skills, language, memory, and concentration after a period of normal early development. The cumulative incidence of neurodegenerative diseases in children is estimated at about 0.6 per 1,000 live births.

Children with neurodegenerative conditions face many challenges as their abilities decline over time. This can naturally lead to feelings of sadness, anxiety, frustration and other emotional struggles. However, some children may also develop symptoms of diagnosable mental health conditions like obsessive-compulsive disorder (OCD) on top of their underlying disease.

OCD symptoms in a child with a neurodegenerative condition

This case study describes a child who had been diagnosed with a rare neurodegenerative disease several years earlier. The child had experienced gradual loss of vision (now only peripheral vision remaining), motor skills, and cognitive abilities, especially related to language, memory and concentration.

Over the past year, the child’s parents noticed increasing compulsive behaviors:

• Insisting on doing many actions themselves, in very specific ways and repeatedly
• Turning lights on and off multiple times
• Rigid routines around meals and getting dressed
• Mimicking/copying what others said and did
• Going in and out of doors repeatedly
• Using the toilet multiple times in a row
• Demanding exact placement of objects
• Becoming very upset if routines were disrupted

These compulsive behaviors were taking up over 8 hours of the child’s day and causing significant stress for the whole family. The child described feeling that their “body was controlling” the need to do these actions.

Challenges in diagnosing and treating OCD in this population

There are several reasons why it can be difficult to diagnose and treat OCD symptoms in children with neurodegenerative diseases:

1. Many emotional/behavioral issues can be understood as natural reactions to the challenges of progressive disease. It may not be clear if symptoms meet criteria for a separate mental health diagnosis.

2. The underlying disease causes cognitive impairments that can make it hard for children to engage in standard psychotherapy approaches.

3. Each specific neurodegenerative disease is quite rare, so clinicians often have limited experience with these conditions.

4. There is little research on mental health treatments specifically for children with neurodegenerative diseases.

5. Children may have difficulty describing their internal experiences due to language impairments.

6. Symptoms may manifest differently than in typically developing children (e.g. this child’s compulsions occurred mainly at home).

Because of these challenges, clinicians may be uncertain about diagnosing OCD or recommending standard OCD treatments for children with neurodegenerative conditions. However, this case study suggests that adapted treatment approaches may still be beneficial.

Adapting OCD treatment for a child with cognitive impairments

The treatment team decided to use a combination of medication (sertraline, an SSRI) and cognitive-behavioral therapy with exposure and response prevention (ERP). However, they made several adaptations to account for the child’s vision loss, cognitive impairments, and other challenges:

• Started medication right away rather than trying therapy alone first
• Less frequent in-person sessions, with more parent coaching
• Parents took on a larger role in implementing exposure exercises at home
• Used verbal cues and discussions rather than visual aids
• Focused on very concrete, specific exposure tasks
• Had brief weekly family meetings to review progress and set goals
• Allowed phone check-ins with the therapist as needed

The exposure hierarchy (ranking compulsions from easiest to hardest to resist) and other CBT concepts were explained in simple terms the child could understand. For example, they used the image of a “staircase” to represent increasing difficulty levels.

Treatment outcomes

After one month of combined medication and adapted CBT, the child’s compulsive behaviors had decreased from over 8 hours per day to 3-4 hours per day. After six months, compulsions took up less than 1 hour per day.

The family found that starting with the easiest exposure tasks built confidence and made it easier to tackle more difficult compulsions later. They felt the weekly family meetings, reward system, and tools like the “discomfort thermometer” were especially helpful.

While some mild compulsive tendencies remained (e.g. getting stuck on certain sounds), the parents felt equipped to handle any recurrence of symptoms using the strategies they had learned. The child reported finding the “staircase” concept, rewards, weekly meetings, and thermometer tool particularly useful.

Key takeaways for families and clinicians

This case study suggests several important points for families and healthcare providers to consider:

1. Children with neurodegenerative diseases can develop diagnosable mental health conditions like OCD that may benefit from treatment.

2. Standard evidence-based treatments for OCD can be adapted for children with cognitive impairments and other disabilities.

3. A combination of medication and cognitive-behavioral therapy may be helpful, with parents taking on a larger role in implementing the treatment.

4. Simple, concrete explanations of therapy concepts can make them accessible even to children with language/cognitive challenges.

5. Starting with easier exposure tasks helps build confidence and motivation to tackle more difficult compulsions.

6. Regular family meetings to review progress and set goals can help keep treatment on track.

7. Equipping families with tools and strategies empowers them to manage symptoms in the long-term.

While more research is needed, this case demonstrates that children with complex medical conditions can potentially benefit from mental health treatments when thoughtfully adapted to their needs and abilities. Clinicians should not assume that standard psychotherapy approaches are impossible for children with cognitive impairments.

Conclusions

• Children with neurodegenerative diseases may develop treatable mental health conditions like OCD in addition to symptoms directly related to their underlying disease
• Evidence-based OCD treatments can be adapted for children with cognitive impairments by simplifying concepts, involving parents more, and focusing on very concrete exposure tasks
• A combination of medication and adapted cognitive-behavioral therapy may provide significant symptom relief, even in complex cases