Somatic Symptom Disorder Diagnosis: School Letter with Mild, Moderate and Severe Variations

Dear School Team,

I am writing this letter to assist in the school plan for patient's name. I am involved through my role as provider role at hospital name. Patient's name's medical care is currently provided by primary care provider.

After thorough medical assessment by a multi-disciplinary team, patient’s name has been diagnosed with a Somatic Symptom Disorder. This is a debilitating but non-life-threatening disease in which physical symptoms occur due to a dysregulated nervous system response. Sometimes these symptoms are a response to stress, but not always. Most of the time, the experience of symptoms is stressful, making it hard to break the cycle of symptoms. The symptoms are not intentional or faked but experienced despite the patient's will and efforts.

What is Somatization?

See www.chop.edu/ssrds for more details on pediatric somatization. In Somatic Symptom Disorders, common symptoms include pain, dizziness, fatigue, and sensory or motor systems, such as fainting, convulsions, difficulty walking and numbness. Sometimes, a medical condition can be accompanied by a strong component of somatization.

Patient’s name's symptoms include symptoms. There has been a significant impact on functioning.

As somatic symptoms are very likely to happen in the school setting, we often find that school personnel appreciates having information about what to do when these symptoms occur. While patients are learning to work through their symptoms, we consider in-person school an important part of treatment that retrains a dysfunctional nervous system. A key feature of treatment is developing the coping skills to work through symptoms when they occur. School personnel can support treatment and recovery by helping students utilize coping skills to maintain typical school attendance, routine, and expectations. We recommend focusing on maintaining function rather than the experience or impact of symptoms. It is not helpful to ask students to describe their symptoms in detail or engage in other discussion about symptoms. Additionally, it is not helpful for school personnel or peers to ask questions or provide attention to symptoms but rather to allow the student to use coping skills learned in therapies to work through symptoms as they arise. The goal is to not make decisions (including school attendance and participation) based on symptoms or fear of symptoms occurring.

For Mild Symptoms (In School with Occasional Symptoms)

We do not recommend any accommodations at school even though patient’s name may present with some symptoms that interfere with maximal attention and participation, as working through these symptoms is a necessary part of successful treatment. It is important for teachers to understand that patient’s name is experiencing true symptoms, which are real, distressing to experience, and may be uncomfortable. Patient’s name is not faking symptoms or avoiding work, and it is important to provide patient’s name with patience and support as patient’s name works through these symptoms, though it is also important for teachers and peers to refrain from providing attention to these symptoms. Patient’s name is not faking symptoms or avoiding work, and it is important to provide patient’s name with patience and support as patient’s name works through these symptoms, though it is also important for teachers and peers to refrain from providing attention to these symptoms. While it may take patient’s name longer to complete work, we encourage that patient’s name work through the challenges and complete all assignments.

When experiencing a challenge, students are encouraged to independently engage in use of relaxation/coping strategies (e.g., deep breathing, mindfulness, etc.) within their seats for a brief period if needed and then redirect attention back to their learning. We do not encourage students to be sent to the nurse or sent home due to symptoms/dysfunction as this reinforces symptoms and dysfunction versus providing opportunities to learn to cope with symptoms.

In general, students should be expected to get to class on time and engage in gym and other activities, though we want to emphasize that these activities may be difficult for students to do, and they should not be penalized for being late but rather acknowledged for their efforts to utilize coping skills to work through symptoms. If this is not progressing, conversations about using coping strategies to reach time goals can be encouraged (e.g., with the school counselor).

For Moderate Symptoms (In School but Often Missing Days)

In most cases, we do not provide students with any accommodations at school, but depending on the patient's initial level of dysfunction and stage of treatment, some students may initially benefit from some minor accommodations, with the goal of reducing the length of time allotted and/or frequency of use in a planned, stepwise progression.

Specifically, if patient’s name is having a significant somatic episode, patient’s name may benefit from a brief (no more than 10 minutes) trip to the nurse's office, where the nurse can provide a coping strategies list. The goal during this time is for the student to use relaxation/coping strategies (e.g., deep breathing, mindfulness, etc.) and then return to class after this brief period. This should be used at most 2x/day, with the goal of decreasing to 1x/day and then down to none over a brief time. We do not encourage students to be sent home due to pain/dysfunction as this reinforces symptoms and dysfunction versus providing opportunities to cope with symptoms and improve function.

In general, students should be expected to try to get to class on time and engage in gym and other activities, though we want to emphasize that these activities may be difficult for students to do, and they should not be penalized for being late but rather encouraged for their efforts. If this is not progressing, conversations about using coping strategies to reach time goals can be encouraged (e.g., with the school counselor). Students are ideally carrying books akin to their peers. Some may benefit from use of rolling backpack in lieu of an extra set of books or having another student carry books to promote as much independence as possible, with a goal of working back to however they carried books before their symptoms. We do not typically support use of the elevator or wheelchair for our patients, particularly once they have begun engaging/progressing in treatment.

For Severe Symptoms (Severe Dysfunction Preventing School Participation)

It is also important to note that patient’s name has missed a significant amount of school before current reintegration. Patient’s name will need support both to catch up on missed work as well as a plan moving forward to facilitate successful reintegrate into school.

To support patient’s name in catching up on missed work, we respectfully request employing the following specific supports for patient’s name as indicated:

In most cases, as students with SSRDs reintegrate back to school, we do not provide accommodations as their treatment focuses on utilizing coping skills to work through symptoms. However, depending on the patient's initial level of dysfunction, stage of treatment, and how much school they have missed, some students may initially benefit from some accommodations to aid in reintegration after extended absence, with the goal of reducing the length of time allotted and/or frequency of use of these supports in a planned, stepwise progression.

Given that patient’s name has not been able to attend school for a significant amount of time, it would not be reasonable to expect immediate, full-time return, but full-time return is the ultimate goal. To help support return to school, we recommend a stepwise return in which patient’s name begin by attending part-time (e.g., attending first period/first hour of school) or perhaps 2 periods/2 hours, and then add additional periods/time on a regularly planned schedule, and not based on symptoms per se. Specifically, this could include a bump up of time at school every 1-2 weeks until patient’s name is in school for the full school day each day. To help students make this return, they may benefit from some short-term accommodations; however, the goals should be weaning down from accommodations in a planned, stepwise manner on a reasonable basis. Based on the presentation of symptoms, some potential initial accommodations include:

Additionally, if patient’s name is having a significant functional episode, patient’s name may benefit from a brief (no more than 10 minutes) trip to the nurse's office, where the nurse can provide a list of coping strategies. The goal during this time is for patient’s name to use relaxation/coping strategies to work through symptoms (e.g., deep breathing, mindfulness, etc.) and then to return to class after this brief period. This should be used at most 5x/day or 1x per class period, with the goal of decreasing to 1x/day and then down to none over a brief time. Once patients are present for school as planned, we do not encourage students be sent home due to pain/dysfunction as this reinforces symptoms and dysfunction, versus providing opportunities to cope through symptoms and improve function.

Again, it is important to wean down from these accommodations in a planned, stepwise fashion. Generally, students should be expected, over time, to get to class on time and engage in gym and other activities. However, we emphasize that these activities may be difficult for students to do, and initially, they should not be penalized for being late or unable to perform specific activities but acknowledged for their efforts. If this is not progressing, conversations about using coping strategies (not about symptoms) to reach goals can be encouraged (e.g., with the school counselor).

Coping Strategies

Cognitive

Distraction/Relaxation

Prompts

The multi-disciplinary team at hospital name appreciates that the nature and treatment of somatic symptom disorders are challenging and that it may feel distressing or difficult to keep children with symptoms in school. However, maximizing school and returning to function is the cornerstone of treatment of this complex disorder, and we sincerely appreciate the school's efforts in making necessary temporary accommodations to promote patient’s name's being in school as much time as possible.

While somatic symptoms usually abate over time, it is also possible that new symptoms develop as others recede. Usually, this is another manifestation of somatic symptoms, but not always, and new symptoms should be evaluated promptly and proactively. If new symptoms occur, please refer patient’s name to their primary care doctor, who will be able to undertake appropriate evaluation.

 

Sincerely,

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