Guidelines for Managing HI in School

Experts: Leela Morrow, PsyD, Psychologist, and Sophie Foss, PhD, Neuropsychologist

Congenital Hyperinsulinism Center

As your child starts back at school this fall, it is important to keep in mind what they may need to be successful in the classroom and school settings. Children with chronic medical conditions such as hyperinsulinism (HI) often need support and accommodations, which can be provided through an Individualized Healthcare Plan developed with the school nurse. 

Some children may require additional accommodations or services to manage disabilities related to their HI, such as ADHD, anxiety or learning differences. These kinds of neurodevelopmental conditions occur in many individuals with HI, with some studies reporting these types of differences in 30% to almost 50% of children with HI.

Be proactive

For this reason, it is important for caregivers and educators to work proactively to monitor a child's cognitive and academic development and intervene early if there are signs of increased difficulties. These signs can be behaviors such as:

• significant distractibility
• fidgeting or high activity level
• difficulty picking up early academic skills such as counting and letters
• trouble navigating social interactions

Some children may also have difficulty with emotion regulation, particularly if they encounter frustrating social interactions (with peers or adults), confusing or challenging academic demands, or overwhelming sensory environments (a crowded classroom, chatty neighbors, busy lunchroom).

Here are steps parents or caregivers can take:

1. Let me introduce myself

Connect with your child's teacher early in the year and request a meeting to discuss your child's healthcare needs. If you have concerns about your child’s behavior and academic or social-emotional development, discuss them with the teacher and ask how they have managed similar concerns with other students.

Then establish a regular system of check-ins (monthly emails, brief in-person chats at pickup) to ensure ongoing communication. These check-ins could also include a guidance counselor, the school nurse, or any learning specialists or therapists with whom your child works.

2. If new problems arise

If new concerns arise, talk with the teacher about strategies they might be able to try in the classroom. Even without a formal evaluation, many challenges can be addressed through commonly used learning strategies. Some of the most common and effective strategies include preferential seating (putting your child near the teacher or point of instruction and away from distractions), additional review of tricky concepts from the teacher or with a classroom aide one-on-one, and reducing workload. For example, rather than penalizing the child for unfinished assignments, the teacher would simply check the accuracy of work the child was able to complete.

Check in often about how the modifications are working, and ask what you can do at home to support your child's learning during this period as well.

3. Request a free evaluation at school

If your child continues to have difficulties, the next step is to request a free evaluation from the school. School districts are required to evaluate any child who lives in the district and may need special education services. This includes students who are homeschooled or go to a private school, even if the private school is in another city or town.

The process to request this evaluation starts with a written request to the school or district's special education coordinator. Your child's teacher may know to whom this request should go. If they do not, the principal or school district's main administrative office are good resources to ask.

Additional details on the process of requesting a school evaluation (and a list of steps), as well as sample letter templates to use, are available at understood.org.

4. Special education modifications

The results of this evaluation may determine that your child is eligible for special education modifications through an individualized educational program (IEP) or Section 504 plan, or your child may be found ineligible for these programs. If you disagree with the results of the evaluation, you can request an additional independent evaluation or seek out a private evaluation.

Medical and psychological diagnoses such as ADHD, anxiety, a learning disability (such as dyslexia) or autism spectrum disorder cannot be made through a school evaluation. If you are concerned that your child may have one of these conditions, speak with their primary care physician about pursuing a private diagnostic evaluation.

5. Help at the HI Center

If you are a patient of the Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia, you can ask your endocrine provider to put in a consultation referral to the center’s pediatric psychologist, Dr. Leela Morrow, who can meet with you and your child. You can also ask your endocrine provider to put in a referral to Dr. Sophie Foss, our pediatric neuropsychologist, who works with CHOP patients to conduct neurocognitive assessments for concerns related to thinking skills (attention, memory) or learning difficulties.